Статті в журналах з теми "Washington Monument Association (New York, N.Y.)"

For US actor, playwright, and theatre manager Harry Watkins (1825–94), the 1852–3 season was a whirlwind of ups and downs, elation and despair, triumph and tragedy. His engagement as an actor in C. R. Thorne's stock company at the New York Theatre ended abruptly in mid-September, leaving him without work at a point when few theatres were hiring. He mourned the loss of a beloved cousin, Jane Mott, who passed away one rainy day in October after a drawn-out illness. He endured many a headache while spearheading a fund-raising effort among his fellow actors to contribute a memorial stone to the Washington Monument. He was elected to the board of the American Dramatic Fund Association, but infighting among the directors left him feeling insulted and underappreciated, ultimately leading him to cease his involvement. By far, his biggest frustration was his inability to obtain reliable employment. He wrote many letters to many managers, to no avail. More than once, he considered giving up the theatre altogether.

This study aims to determine the implementation of curriculum in learning activities of pre-school children and develop motion pattern-based learning media for pre-school children. This research was carried out in thirty kindergartens in East Jakarta. It was conducted in 4 months, from June to October 2018. This research is included in the development and evaluation research (mixed method). The scope of the research is the implementation of curriculum and the development of learning media for pre-school children by using customized tools. Data was collected by using questionnaires and analyzed by using Guttman scale and Likert scale. Percentage of the implementation of learning for pre-schoolers in Kindergarten in East Jakarta is very good. The goal dimension got 98.2%, the content dimension got 99.3%, the method dimension got 99.3% and the evaluation dimension got 98.3%. The product of this study is a learning media that is adjusted to the implementation of motion pattern-based learning activities for pre-school children. Keywords: Early childhood education curriculum, Motion Pattern-Based Learning Media, Pre-school children References Arikunto, S. (2010). Prosedur Penelitian Suatu Pendekatan Praktik. Jakarta: Asdi Mahasatya. Arikunto, S. (2014). Prosedur Penelitian. Jakarta: Rineka Cipta. Ayob, A., Badzis, M., & Nordin, A. L.Abdullah, R. (2016). Kurikulum Permata Negara. Tanjong Malim: NCDRC, UPSI. Azia, R. S. (1976). Curriculum Principles and Foundation. New York: Harper and Row Publisher. Boyle, T., & Phelps, R. (2010). Curriculum To Acknowledge Diversity. The International Journal of Learning, 17(2), 357–370. Brady, L. (1995). Curriculum development (5th ed.). Sydney: Prentice-Hall. Cholimah, N. (2012). Pengembangan Kurikulum PAUD Berdasarkan Permen 58 Tahun 2009. Criticos. (1996). Media. Amazon. George A.Beauchamp. (1981). Curriculum Theory. F.E. Peacock Publisher. Jamaris, M. (2006). Perkembangan dan Pengembangan Anak Usia Dini Taman Kanak-kanak. Jakarta: Gramedia Widiasarana. Johnson, M. (1967). Intentionality in Education. New York: Center for Curriculum Research and Services. Kawaitouw, Y. I., Widiastuti, A. A., & Kurniawan, M. (2018). Unit Studies Curriculum: Strategi Guru Dalam Implementasi Kurikulum di Jungle School Sidomukti. Jurnal Pendidikan Usia Dini, 12(November), 371–380. Kerlinger, F. N. (1990). Asas-asas Penelitian Behavioral (3th ed.). Yogyakarta: Gajah Mada University Press. Langgulung, H. (1989). Manusia dan Pendidikan: Suatu Analisa Psikologik dan Pendidikan. Jakarta: Pustaka al-Husna. MacDonald, J. B. (1965). Educational Models for Instruction. Washington DC: The Association for Supervision and Curriculum Development. Morrison, G. S. (2012). Dasar-dasar Pendidikan Anak Usia Dini. Jakarta: Indeks. Olivia, P. F. (1992). Developing the Curriculum (Third Edit). New York: Harper Collins Publishers Inc. Ornstein, A. C. (2004). Curriculum:Foundation, Principles, and Issues. Boston: Pearson Education, Inc. Ozturk, I. H. (2011). Curriculum Reform and Teacher Autonomy in Turkey: the case of the History Teaching". International Journal of Instruction, 4 (2)(2), 113–127. Prihatini, P. (2014). Kajian Ide Kurikulum 2012 PAUD dan Implikasinya dalam Pengembangan KTSP. Cakrawala: Jurnal Pendidikan Anak USia Dini. Rahelly, Y. (2018). Implementasi Kurikulum 2013 Pendidikan Anak Usia Dini di Sumatera Selatan. Jurnal Pendidikan Usia Dini, 12(November), 381–390. https://doi.org/https://doi.org/10.21009/JPUD.122.19 Rohmansyah, N. A. (2017). Pengaruh Model Pembelajaran Problem Based Learning Terhadap Kemampuan Pemahaman Konsep Pendidikan Jasmani Pada Pembelajaran Tematik Terintegrasi Siswa Kelas IV. JURNAL PENJAKORA, 4(28–35). Saylor, J. G., & Alexander, W. M. (1981). Curriculum Planning for Better Teaching and Learning. Holt-Rinehart and Winston. Sujiono, Y. N. (2009). Konsep Dasar Pendidikan Anak Usia Dini. Jakarta: Indeks. Sukmadinata, N. S. (2000). Pengembangan Kurikulum Teori dan Praktek. Bandung: Remaja Rosdakarya. Sutapa, P. (2014). Pengembangan Model Pembelajaran Pendidikan Jasmani Berbasis Kinestetik Untuk Anak Usia Pra Sekolah. Yogyakarta. Webster. (1993). Webster’s New International Dictionary. GC Company. Widoyoko, E. P. (2012). Evaluasi Program Pembelajaran. Yogyakarta: Pustaka Pelajar. Winarno. (2011). Winarno. Metodologi dalam Penelitian Pendidikan Jasmani. Malang: Media Cakrawala Press. Winarso, W. (2017). Dasar Pengembangan Kurikulum Sekolah, (January 2015).

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The debate about diagnoses and treatment of attention deficit hyperactive disorder (ADHD) in children continue to range on between the developmental and biological perspectives. While there is increasing evidence that support the biological susceptibility of the disorder, a number of researches also emphasized the significant effect of environment on the syndrome. This study used developmental perspectives to evaluate and bring together various bio-psychosocial factors that impact on children diagnosed with ADHD. The study explored and integrated the existing and advancing study on ADHD to a more refined pattern that embraced developmental perspectives. The study also discussed how the linkage in childhood ADHD fits within the developmental psychopathology perspective. 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This study aims to develop an activity-based science learning model with an inquiry learning approach for early childhood that can be used to increase the sense of curiosity and scientific thinking in children aged 5-6 years. This research was conducted with research and development / R & D research methods. Data was collected through interviews, observations, questionnaires, pre-test and post-test for children. Data analysis using paired t-test. The results showed that children were interested and enthusiastic in the learning process by using a science-based learning model with the inquiry approach, Sig. (2-tailed) showing results of 0.000, so the value of 0.000 <0.05 was different from before and after the use of learning models. The results showed that: children can understand the material given by the teacher, the child is more confident and has the initiative to find answers to the teacher's questions about science material, the child's curiosity increases to examine the information provided by the teacher, the child's understanding of work processes and procedures from science learning with the inquiry approach getting better. It was concluded that an activity-based science learning model with an inquiry approach for children aged 5-6 years used an activity model with an inquiry learning approach based on children's interests and children's needs so that children's curiosity would emerge and continue to be optimally stimulated. Keywords: Inquiry approach, Learning model, Science Learning References Abdi, A. (2014). The Effect of Inquiry-based Learning Method on Students’ Academic Achievement in Science Course. 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Early Childhood Science Quarterly. Caballero Garcia, P. A., & Diaz Rana, P. (2018). Inquiry-Based Learning: an Innovative Proposal for Early Childhood Education. Journal of Learning Styles, 11(22), 50–81. Cridge, B. J., & Cridhe, A. G. (2011). Evaluating How Universities Engage School Student with The Science: a Model Based on Analysis of The Literature. Australian University Review. Darmadi. (2017). Pengembangan Model dan Metode Pembelajaran dalam Dinamika Belajar Siswa. Yogyakarta: Deepublish. Doǧru, M., & Şeker, F. (2012). The effect of science activities on concept acquisition of age 5-6 children groups. Kuram ve Uygulamada Egitim Bilimleri, 12(SUPPL. 4), 3011–3024. Duran, M., & Dökme, I. (2016). The effect of the inquiry-based learning approach on student’s critical-thinking skills. Eurasia Journal of Mathematics, Science and Technology Education, 12(12), 2887–2908. https://doi.org/10.12973/eurasia.2016.02311a Falloon, G. (2019). Using simulations to teach young students science concepts: An Experiential Learning theoretical analysis. Computers & Education, 135(March), 138–159. https://doi.org/10.1016/j.compedu.2019.03.001 Gerli Silm, Tiitsaar, K., Pedaste, M., Zacharia, Z. C., & Papaevripidou, M. (2015). Teachers’ Readiness to Use Inquiry-based Learning: An Investigation of Teachers’ Sense of Efficacy and Attitudes toward Inquiry-based Learning. International Council of Association for Science Eduacation, 28(4), 315–325. Ginsburg, H. P., & Golbeck, S. (2004). Thoughts on the future of research on mathematics and science learning and education. Early Childhood Research Quarterly, 19(1), 190–200. Gross, C. M. (2012). Science concepts young children learn through water play. Dimensions of Early Childhood, 40(2), 3–11. Diambil dari http://www.proxy.its.virginia.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=78303868&site=ehost-live&scope=site Guo, Y., Piasta, S. B., & Bowles, R. P. (2015). Exploring Preschool Children’s Science Content Knowledge. Early Education and Development, 26(1), 125–146. https://doi.org/10.1080/10409289.2015.968240 Halim, L., Abd Rahman, N., Zamri, R., & Mohtar, L. (2018). The roles of parents in cultivating children’s interest towards science learning and careers. Kasetsart Journal of Social Sciences, 39(2), 190–196. https://doi.org/10.1016/j.kjss.2017.05.001 Jirout, J. J. (2011). Curiosity and the Development of Question Generation Skills, (1994), 27–30. Justice, L. M., & Kaderavek, J. (2004). Embedded-explicit emergent literacy I: Background and description of approach. Language, Speech, and Hearing Services in Schools, 35, 201–211. Lind, K. K. (1998). Science in Early Childhood: Developing and Acquring Fundamental Concepts and Skills. Retrieved from ERIC (ED418777), 85. Diambil dari http://files.eric.ed.gov/fulltext/ED418777.pdf Lind, K. K. (2005). Exploring science in early childhood. (4 ed.). New York: Thomson Delmar Learning. Lindholm, M. (2018). Promoting Curiosity ? Possibilities and Pitfalls in Science Education, (1), 987–1002. Lu, S., & Liu, Y. (2017). Integrating augmented reality technology to enhance children ’ s learning in marine education, 4622(November), 525–541. https://doi.org/10.1080/13504622.2014.911247 Lukas, M. (2015). Parental Involvement of Occupational Education for Their Children. International Multidicilinary Scientific Cocerence on Social Science and Arts. Maltese, A. V, & Tai, R. H. (2011). Pipeline Persistence; Examining The Association of Educational with Earn Degrees i STEM Among US Students. Science Education. Nugent, G., Barker, B., Welsch, G., Grandgenett, N., Wu, C., & Nelson, C. (2015). A Model of Factors Contributing to STEM Learning and Career Orientation. International Journal of Science Education. Pluck, G., & Johnson, H. L. (2011). Stimulating curiosity to enhance learning. Reiser, B. J. (2004). Scaffolding complex learning: The mechanisms of structuring and problematizing student work. Journal of the Learning Sciences, 13(3), 273–304. Sackes, M., Trundle, K. C., & Flevares, L. M. (2009). Using children’s literature to teach standard-based science concepts in early years. Early Childhood Education Journal, 36(5), 415–422. https://doi.org/10.1007/s10643-009-0304-5 Walin, H., & Grady, S. O. (2016). Curiosity and Its Influence on Children ’ s Memory, 872–876. Wang, F., Kinzie, M. B., McGuire, P., & Pan, E. (2010). Applying technology to inquiry-based learning in early childhood education. Early Childhood Education Journal, 37(5), 381–389. https://doi.org/10.1007/s10643-009-0364-6 Wu, S. C., & Lin, F. L. (2016). Inquiry-based mathematics curriculum design for young children-teaching experiment and reflection. Eurasia Journal of Mathematics, Science and Technology Education, 12(4), 843–860. https://doi.org/10.12973/eurasia.2016.1233a Yahya, A., & Ismail, N. (2011). Factor in Choosing Courses and Learning Problems in Influencing The Academic Achievment of Student`s Technical Courses in Three Secondary School in The State of Negei Sembilan. Journal of Technical, Vocational & Eginereing Education. Youngquist, J., & Pataray-Ching, J. (2004). Revisiting ‘“play”’: Analyzing and articulating acts of inquiry. Early Childhood Education Journal, 31(3), 171–178.

Стаття присвячена психолінгвістичній проблематиці: сфері психологічної діяльності, що має переважно дискурсивний характер і побудована на використанні різних способів мовленнєвого впливу, конструюванні дискурсів як реалізації прикладних потреб психолога в його професійно-мовленнєвій діяльності; висвітленню можливостей дискурсивного впливу, пов’язаного з різними аспектами його побудови й отриманими ефектами, конкретними видами дискурсів у тих чи тих умовах роботи психотерапевта й психоконсультанта. Описується можливість зміни свідомості й поведінки особистості людини під впливом потенціалу психологічного дискурсу та спроможність його здійснювати мовленнєве втручання в психічні регулятори життєдіяльності особистості, буття й психокомунікативної взаємодії в соціальному просторі; визначається дискурс як породжений психологом концепт, що конституює соціальні стосунки, образ «Я» й «Інших», формує соціальну ідентичність, уявлення, судження, настанови, перетворює неадаптивні й недоречні патерни поведінки та ригідні стереотипи свідомості людини на адаптивні й творчі, кардинально змінюючи старі й формуючи в неї нові смисли; подаються виокремлені автором статті приклади різних видів дискурсів, а саме: дискурс-роз’яснення, дискурсімперфект, дискурс-перенос, дискурс-генетичне витлумачення, дискурс-перетлумачення, Ядискурс, дискурс-перезавантаження, дискурс-переототожнення, дискурс-самовираження почуттів тут-і-зараз. Література References 1. Бьюдженталь Д. Искусство психотерапевта. 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In recent years, STEAM (Science, Technology, Engineering, Art, and Mathematics) has received wide attention. STEAM complements early childhood learning needs in honing 2nd century skills. This study aims to introduce a loose section in early childhood learning to pre-service teachers and then to explore their perceptions of how to use loose parts in supporting STEAM. The study design uses qualitative phenomenological methods. FGDs (Focus Group Discussions) are used as data collection instruments. The findings point to two main themes that emerged from the discussion: a loose section that supports freedom of creation and problem solving. Freedom clearly supports science, mathematics and arts education while problem solving significantly supports engineering and technology education. Keywords: Early Childhood Educators, Loose-part, STEAM References: Allen, A. (2016). Don’t Fear STEM: You Already Teach It! Exchange, (231), 56–59. Ansberry, B. K., & Morgan, E. (2019). Seven Myths of STEM. 56(6), 64–67. Bagiati, A., & Evangelou, D. (2015). Engineering curriculum in the preschool classroom: the teacher’s experience. European Early Childhood Education Research Journal, 23(1), 112–128. https://doi.org/10.1080/1350293X.2014.991099 Becker, K., & Park, K. (2011). Effects of integrative approaches among science , technology , engineering , and mathematics ( STEM ) subjects on students ’ learning : A preliminary meta-analysis. 12(5), 23–38. Berk, L. E. (2009). Child Development (8th ed.). Boston: Pearson Education. Can, B., Yildiz-Demirtas, V., & Altun, E. (2017). The Effect of Project-based Science Education Programme on Scientific Process Skills and Conception of Kindergargen Students. 16(3), 395–413. Casey, T., Robertson, J., Abel, J., Cairns, M., Caldwell, L., Campbell, K., … Robertson, T. (2016). Loose Parts Play. Edinburgh. Cheung, R. H. P. (2017). Teacher-directed versus child-centred : the challenge of promoting creativity in Chinese preschool classrooms. Pedagogy, Culture & Society, 1366(January), 1–14. https://doi.org/10.1080/14681366.2016.1217253 Clements, D. H., & Sarama, J. (2016). Math, Science, and Technology in the Early Grades. The Future of Children, 26(2), 75–94. Cloward Drown, K. (2014). Dramatic lay affordances of natural and manufactured outdoor settings for preschoolaged children. Dejarnette, N. K. (2018). Early Childhood Steam: Reflections From a Year of Steam Initiatives Implemented in a High-Needs Primary School. Education, 139(2), 96–112. DiGironimo, N. (2011). What is technology? Investigating student conceptions about the nature of technology. International Journal of Science Education, 33(10), 1337–1352. https://doi.org/10.1080/09500693.2010.495400 Dugger, W. E., & Naik, N. (2001). Clarifying Misconceptions between Technology Education and Educational Technology. The Technology Teacher, 61(1), 31–35. Eeuwijk, P. Van, & Zuzana, A. (2017). How to Conduct a Focus Group Discussion ( FGD ) Methodological Manual. Flannigan, C., & Dietze, B. (2018). Children, Outdoor Play, and Loose Parts. Journal of Childhood Studies, 42(4), 53–60. https://doi.org/10.18357/jcs.v42i4.18103 Fleer, M. (1998). The Preparation of Australian Teachers in Technology Education : Developing The Preparation of Australian Teachers in Technology Education : Developing Professionals Not Technicians. Asia-Pacific Journal of Teacher Education & Development, 1(2), 25–31. Freitas, H., Oliveira, M., Jenkins, M., & Popjoy, O. (1998). The focus group, a qualitative research method: Reviewing the theory, and providing guidelines to its planning. In ISRC, Merrick School of Business, University of Baltimore (MD, EUA)(Vol. 1). Gomes, J., & Fleer, M. (2019). The Development of a Scientific Motive : How Preschool Science and Home Play Reciprocally Contribute to Science Learning. Research in Science Education, 49(2), 613–634. https://doi.org/10.1007/s11165-017-9631-5 Goris, T., & Dyrenfurth, M. (n.d.). Students ’ Misconceptions in Science , Technology , and Engineering . Gull, C., Bogunovich, J., Goldstein, S. L., & Rosengarten, T. (2019). Definitions of Loose Parts in Early Childhood Outdoor Classrooms: A Scoping Review. The International Journal of Early Childhood Environmental Education, 6(3), 37. Hui, A. N. N., He, M. W. J., & Ye, S. S. (2015). Arts education and creativity enhancement in young children in Hong Kong. Educational Psychology, 35(3), 315–327. https://doi.org/10.1080/01443410.2013.875518 Jarvis, T., & Rennie, L. J. (1996). Perceptions about Technology Held by Primary Teachers in England. Research in Science & Technological Education, 14(1), 43–54. https://doi.org/10.1080/0263514960140104 Jeffers, O. (2004). How to Catch a Star. New York: Philomel Books. Kiewra, C., & Veselack, E. (2016). Playing with nature: Supporting preschoolers’ creativity in natural outdoor classrooms. International Journal of Early Childhood Environmental Education, 4(1), 70–95. Kuh, L., Ponte, I., & Chau, C. (2013). The impact of a natural playscape installation on young children’s play behaviors. Children, Youth and Environments, 23(2), 49–77. Lachapelle, C. P., Cunningham, C. M., & Oh, Y. (2019). What is technology? Development and evaluation of a simple instrument for measuring children’s conceptions of technology. International Journal of Science Education, 41(2), 188–209. https://doi.org/10.1080/09500693.2018.1545101 Liamputtong. (2010). Focus Group Methodology : Introduction and History. In Focus Group MethodoloGy (pp. 1–14). Liao, C. (2016). From Interdisciplinary to Transdisciplinary: An Arts-Integrated Approach to STEAM Education. 69(6), 44–49. https://doi.org/10.1080/00043125.2016.1224873 Lindeman, K. W., & Anderson, E. M. (2015). Using Blocks to Develop 21st Century Skills. Young Children, 70(1), 36–43. Maxwell, L., Mitchell, M., and Evans, G. (2008). Effects of play equipment and loose parts on preschool children’s outdoor play behavior: An observational study and design intervention. Children, Youth and Environments, 18(2), 36–63. McClure, E., Guernsey, L., Clements, D., Bales, S., Nichols, J., Kendall-Taylor, N., & Levine, M. (2017). How to Integrate STEM Into Early Childhood Education. Science and Children, 055(02), 8–11. https://doi.org/10.2505/4/sc17_055_02_8 McClure, M., Tarr, P., Thompson, C. M., & Eckhoff, A. (2017). Defining quality in visual art education for young children: Building on the position statement of the early childhood art educators. Arts Education Policy Review, 118(3), 154–163. https://doi.org/10.1080/10632913.2016.1245167 Mishra, L. (2016). Focus Group Discussion in Qualitative Research. TechnoLearn: An International Journal of Educational Technology, 6(1), 1. https://doi.org/10.5958/2249-5223.2016.00001.2 Monhardt, L., & Monhardt, R. (2006). Creating a context for the learning of science process skills through picture books. Early Childhood Education Journal, 34(1), 67–71. https://doi.org/10.1007/s10643-006-0108-9 Monsalvatge, L., Long, K., & DiBello, L. (2013). Turning our world of learning inside out! Dimensions of Early Childhood, 41(3), 23–30. Moomaw, S. (2012). STEM begins in the early years. School Science & Mathematics, 112(2), 57–58. Moomaw, S. (2016). Move Back the Clock, Educators: STEM Begins at Birth. School Science & Mathematics, 116(5), 237–238. Moomaw, S., & Davis, J. A. (2010). STEM Comes to Preschool. Young Cihildren, 12–18(September), 12–18. Munawar, M., Roshayanti, F., & Sugiyanti. (2019). Implementation of STEAM (Science, Technology, Engineering, Art, Mathematics)-Based Early Childhood Education Learning in Semarang City. Jurnal CERIA, 2(5), 276–285. National Research Council. (1996). National Science Education Standards. Washington, DC: National Academy of Sciences. Nicholson, S. (1972). The Theory of Loose Parts: An important principle for design methodology. Studies in Design Education Craft & Technology, 4(2), 5–12. O.Nyumba, T., Wilson, K., Derrick, C. J., & Mukherjee, N. (2018). The use of focus group discussion methodology: Insights from two decades of application in conservation. Methods in Ecology and Evolution, 9(1), 20–32. https://doi.org/10.1111/2041-210X.12860 Padilla-Diaz, M. (2015). Phenomenology in Educational Qualitative Research : Philosophy as Science or Philosophical Science ? International Journal of Educational Excellence, 1(2), 101–110. Padilla, M. J. (1990). The Science Process Skills. Research Matters - to the Science Teacher, 1(March), 1–3. Park, D. Y., Park, M. H., & Bates, A. B. (2018). Exploring Young Children’s Understanding About the Concept of Volume Through Engineering Design in a STEM Activity: A Case Study. International Journal of Science and Mathematics Education, 16(2), 275–294. https://doi.org/10.1007/s10763-016-9776-0 Rahardjo, M. M. (2019). Implementasi Pendekatan Saintifik Sebagai Pembentuk Keterampilan Proses Sains Anak Usia Dini. Scholaria: Jurnal Pendidikan Dan Kebudayaan, 9(2), 148–159. https://doi.org/10.24246/j.js.2019.v9.i2.p148-159 Robison, T. (2016). Male Elementary General Music Teachers : A Phenomenological Study. Journal of Music Teacher Education, 26(2), 77–89. https://doi.org/10.1177/1057083715622019 Rocha Fernandes, G. W., Rodrigues, A. M., & Ferreira, C. A. (2018). Conceptions of the Nature of Science and Technology: a Study with Children and Youths in a Non-Formal Science and Technology Education Setting. Research in Science Education, 48(5), 1071–1106. https://doi.org/10.1007/s11165-016-9599-6 Sawyer, R. K. (2006). 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Objectives: To investigate the association of state-level Medicaid expansion and non-elderly mortality rates from 1999 to 2018 in Northeastern urban settings.Methods: This quasi-experimental study utilized a synthetic control method to assess the association of Medicaid expansion on non-elderly urban mortality rates [1999–2018]. Counties encompassing the largest cities in the Northeastern Megalopolis (Washington D.C., Baltimore, Philadelphia, New York City, and Boston) were selected as treatment units (n = 5 cities, 3,543,302 individuals in 2018). Cities in states without Medicaid expansion were utilized as control units (n = 17 cities, 12,713,768 individuals in 2018).Results: Across all cities, there was a significant reduction in the neoplasm (Population-Adjusted Average Treatment Effect = −1.37 [95% CI −2.73, −0.42]) and all-cause (Population-Adjusted Average Treatment Effect = −2.57 [95%CI −8.46, −0.58]) mortality rate. Washington D.C. encountered the largest reductions in mortality (Average Treatment Effect on All-Cause Medical Mortality = −5.40 monthly deaths per 100,000 individuals [95% CI −12.50, −3.34], −18.84% [95% CI −43.64%, −11.67%] reduction, p = &lt; 0.001; Average Treatment Effect on Neoplasm Mortality = −1.95 monthly deaths per 100,000 individuals [95% CI −3.04, −0.98], −21.88% [95% CI −34.10%, −10.99%] reduction, p = 0.002). Reductions in all-cause medical mortality and neoplasm mortality rates were similarly observed in other cities.Conclusion: Significant reductions in urban mortality rates were associated with Medicaid expansion. Our study suggests that Medicaid expansion saved lives in the observed urban settings.

Trong khoảng 10 - 15 năm gần đây, ở Việt Nam đã nổi lên luận điểm rằng: cải cách thể chế kinh tế ngày càng đóng vai trò quan trọng hơn trong tiến trình đổi mới. Khi các nguồn lực như tài nguyên thiên nhiên, lao động giá rẻ và vốn...đã đến giới hạn thì cải cách thể chế trở thành đòi hỏi tất yếu đối với nền kinh tế. Tuy nhiên, đây cũng là thử thách khó khăn của quá trình phát triển. Trên thế giới, nhiều quốc gia chỉ đạt được một phần mục tiêu của cải cách, thậm chí ở một số quốc gia nỗ lực cải cách thể chế lại đẩy nền kinh tế vào những bất ổn không ngừng. Tiến trình cải cách thể chế kinh tế sẽ khó thể thành công nếu không đi kèm với nỗ lực thiết lập một nền tảng quản trị quốc gia vững mạnh. Từ khóa Quản trị, thể chế, kinh tế thị trường, cải cách References [1] Acemoglu, Daron and James Robinson (2012). Why Nations Fail: The Origins of Power, Prosperity, and Poverty. Random House[2] Acemoglu, Daron, Simon Johnson and James A. Robinson (2001), “The Colonial Origins of Comparative Development: An Empirical Investigation” The American Economic Review Vol. 91, No. 5 (Dec., 2001)[3] Acemoglu, Daron, Simon Johnson and James Robinson (2005). “Institutions as Fundamental Cause of Long run Growth”, Handbook ofEconomic Growth, Volume IA. Edited by Philippe Aghion and Steven N. Durlauf. 2005 Elsevier B.V[4] Asian Development Bank (1995). Governance: Sound Development Management, October 1995;[5] Diễn đàn kinh tế tư nhân Việt Nam 2016: Cơ hội, thách thức và giải pháp. Hà nội,[6] Heritage Foundation (2017). 2017 Index of Economic Freedom,[7] [http://www.heritage.org/index/ranking][8] International Development Association (1998). Additions to IDA Resources: Twelfth Replenishment (IDA12). 23 December 1998; [9] Kasper, Wolfgang and Manfred E Streit (1999). Institutional Economics: Social Order and Public Policy, Edward Elgar. Tr. 41[10] Kaufmann, Daniel; Aart Kraay, Massimo Mastruzzi (2010), The Worldwide Governance Indicators Methodology and Analytical Issues, the World Bank Policy Research Working Paper 5430, September 2010[11] Nguyễn Quang Thuấn (2017). “Cải thiện nền quản trị quốc gia, tạo môi trường thuận lợi thúc đẩy tăng trưởng kinh tế trong giai đoạn tới”, tham luận tại Diễn đàn Kinh tế Việt Nam 2017: Phát huy nội lực, tăng trưởng bền vững, Ban kinh tế trung ương ngày 27/06/2017[12] North, D.C. (1990), Institutions, Institutional Change and Economic Performance, Cambridge and New York: Cambridge University Press.[13] Osborne, S. P. (2006), “The New Public Governance?” Public Management Review, vol. 8, No. 3, pp. 377-388.[14] UNDP (1997). “Governance for Sustainable Human Development” New York; WB (1994). Governance: The World Bank’s Experience. Washington DC; [15] VCCI & USAID (2015). Báo cáo năng lực cạnh tranh cấp tỉnh năm 2015. Hà Nội: Phòng Thương mại và Công nghiệp Việt Nam và Cơ quan Phát triển Quốc tế Hoa Kỳ [16] Wolfensohn, James D. (1999), Address to the Board of Governors (September 28, 1999), the World Bank[17] WB (1992). World Development Report: Governance and Development, Washington DC. [18] WB (1989). Sub-Saharan Africa: From Crisis to Sustainable Growth, Washington DC[19] WB (2016). Ease of Doing Business 2016. Washington DC [20] http://www.doingbusiness.org/data/exploreeconomies/vietnam[21] WB (1997). World Development Report 1997. Washington DC. [22] WB (2017). Worldwide Governance Indicator, [23] http://info.worldbank.org/governance/wgi/index.aspx#reports[24] World Economic Forum (2016). Global Competitiveness Report 2016-2017, Geneva.

BackgroundTotal knee arthroplasty (TKA) is among the most common surgical procedures performed in the USA and comprises an outsized proportion of Medicare expenditures. Previous work-associated higher safety-net burden hospitals with increased morbidity and in-hospital mortality following total hip arthroplasty. Here, we examine the association of safety-net burden on postoperative outcomes after TKA.MethodsWe retrospectively analyzed 1 141 587 patients aged ≥18 years undergoing isolated elective TKA using data from the State Inpatient Databases for Florida, Kentucky, Maryland, New York and Washington from 2007 through 2018. Hospitals were grouped into tertiles by safety-net burden status, defined by the proportion of inpatient cases billed to Medicaid or unpaid (low: 0%–16.83%, medium: 16.84%–30.45%, high: ≥30.45%). Using generalized estimating equation models, we assessed the association of hospital safety-net burden status on in-hospital mortality, patient complications and length of stay (LOS). We also analyzed outcomes by anesthesia type in New York State (NYS), the only state with this data.ResultsMost TKA procedures were performed at medium safety-net burden hospitals (n=6 16 915, 54%), while high-burden hospitals performed the fewest (n=2 04 784, 17.9%). Overall in-patient mortality was low (0.056%), however, patients undergoing TKA at medium-burden hospitals were 40% more likely to die when compared with patients at low-burden hospitals (low: 0.043% vs medium: 0.061%, adjusted OR (aOR): 1.40, 95% CI 1.09 to 1.79, p=0.008). Patients who underwent TKA at medium or high safety-net burden hospitals were more likely to experience intraoperative complications (low: 0.2% vs medium: 0.3%, aOR: 1.94, 95% CI 1.34 to 2.83, p<0.001; low: 0.2% vs high: 0.4%, aOR: 1.91, 95% CI 1.35 to 2.72, p<0.001). There were no statistically significant differences in other postoperative complications or LOS between the different safety-net levels. In NYS, TKA performed at high safety-net burden hospitals was more likely to use general rather than regional anesthesia (low: 26.7% vs high: 59.5%, aOR: 4.04, 95% CI 1.05 to 15.5, p=0.042).ConclusionsPatients undergoing TKA at higher safety-net burden hospitals are associated with higher odds of in-patient mortality than those at low safety-net burden hospitals. The source of this mortality differential is unknown but could be related to the increased risk of intraoperative complications at higher burden centers.

ABSTRACT Objective: To compare food insecurity (FI) risk, and food-related COVID-19 infection risk perceptions, practices, and problems (3P) in Washington (WA), New York (NY) and Louisiana (LA). Methods: Data from the RAPID Multi-Wave Risk Perception Study was collected via online surveys between 19 May to 14 July 2020 (N=1260). Multivariable-adjusted logistic and ordinal regressions were performed for odds of FI risk and 3P during these early months of the pandemic. Results: The determinants of FI risk in all states included income, age, and employment. Some determinants were state-specific: households with members at high risk for COVID-19 (WA and NY), ethnicity (NY), education and relationship status (LA). The odds of FI risk were higher among those who perceived higher likelihood of COVID-19 infection via in-store shopping (OR=1.34, 95%CI: 1.06, 1.70), and improperly cooked food (OR=1.87, 95%CI: 1.46, 2.41). FI risk was associated with higher odds of problems related to food affordability (OR=10.66, 95%CI: 7.87, 14.44), preference (OR=2.51, 95%CI: 1.86, 3.39), sufficiency (OR=2.63, 95%CI: 1.96, 3.54), food sources (OR=7.68, 95%CI: 5.73, 10.31), food storage capacity (OR=0.48, 95%CI: 0.36, 0.66), and knowing where to find help in obtaining food (OR=7.68, 95%CI: 5.73, 10.31), most of which did not differ by state. No association was found between food insecurity risk and food-related practices. Conclusion: Better food preparedness is needed to reduce FI risk during pandemics in specific groups in WA, NY, and LA. Specifically, food affordability, sufficiency, storage, sources and increasing knowledge on food programs are limitations that need to be addressed for emergency situations.

Abstract: Nowadays, Vietnamese women are participating actively in parts of the economy that were previously deemed male domain. Women are involved in business activities at all levels in Vietnam, making significant contributions to the economic development of the country. By December 2011, there were 81,226 small and medium enterprises headed by women, accounting for 25% of the total number of enterprises in the country (GSO, 2013). In Vietnam, despite recent economic development, socio-cultural and legal barriers are still very difficult for women since the general perception in society is that a woman’s main duty is to be a good housewife and mother and they are also often perceived as weak, passive and irrational (VWEC, 2007). Even though the studies related to women entrepreneurship development are quite extensive, amongst them only a limited number of researches on the role of legal and socio - cultural barriers on women entrepreneurs in the context of Vietnam have been investigated. Thus, supported by the World Trade Institute (WTI) in Bern, Switzerland, the researchers have chosen this as the subject of this study. Based on a quantitative survey of 110 companies in Hanoi and adjacent areas, the research has taken legal and socio - cultural barriers and explored their effect on the development of women entrepreneurship in the context of Vietnam in order to indicate how women entrepreneurs perceive the impact of socio-cultural factors, economic impacts, and policy reforms on their entrepreneurial situations and initiatives, and to then provide policy implications for promoting women’s entrepreneurship and gender equality in Vietnam. 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A common ground between mental health and judicial-legal domains concerns concepts like “care”, “control” and “possibility to foresee” human behaviour, with particular reference to the “social dangerousness”. The connections between these sense-making practices can be traced by discursive modulation of “certainty/uncertainty”. This study aimed to highlight the discursive peculiarities of a specific socio-cultural context and genre, namely scientific papers. The corpus of data consisted in a selection of 30 papers published by the BJP (from 1975 to 2015), on subjects concerning forensic psychiatry, subjected to Content Analysis and Critical Discourse Analysis. Results showed that the papers adopted two main socio-epistemic rhetorics. On one side, the enunciators proceeded in an “assertive” and rigorous manner through a social-epistemic rhetoric of “reassurance”; on the other side, they gave voice to rhetoric of the “limit”, lacking any cognitive “closure”. References Bakhtin, M.M. (1979). Estetika slovesnogo tvorcestva. Moskow: Iskusstvo. Bennett, T., Holloway, K., & Farrington, D. (2008). The statistical association between drug misuse and crime: A meta-analysis. Aggression and Violent Behavior, 13, 107-118. Berlin, J.A. (1993). Post-structuralism, semiotics, and social-epistemic rhetoric: Converging agendas. In T. Enos & S. Brown (Eds.), Defining the new rhetoric (pp. 137-176). Newbury Park, CA: Sage. Caffi, C. (2001). La mitigazione. Un approccio pragmatico alla comunicazione nei contesti terapeutici [Mitigation. A pragmatic approach to communication within therapeutic contexts]. Münster: LIT Verlag. Cantarini, S., Abraham, W., & Leiss, E. (Eds.) (2014). Certainty-uncertainty – and the Attitudinal Space in Between [SLCS 165]. Amsterdam: John Benjamin. Catanesi, R., Carabellese, F., & Grattagliano, I. (2009). Cura e controllo. Come cambia la pericolosità sociale psichiatrica [Treatment and control. How has the concept of psychiatric social danger changed]. 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Previous studies contend that Philippines is still a ‘collectivist’ society (Cf. Hofstede Center; Cukur et al. 2004:613-634). In this collectivist or community-oriented society, individualism is not something that is highly valued. Being ‘individualistic’ is often associated to being narcissistic, loner, asocial, selfish, etc. However, one may ask whether the youth in the Philippines are not spared from this insidious culture of individualism, notwithstanding the seemingly dominant collective and communitarian character of the society. Although the overwhelming poverty is still the main problem in the Philippines, where according to Wostyn (2010:26) “only the wonderland of movies gives some respite to their consciousness of suffering and oppression”, the Filipino youth of today are also exposed to the consumeristic values of the ‘city’ and are not spared from the contradictions and insecurities posed by the pluralistic society. They are citizens of an increasing social and cultural pluralism characteristic of many liberal societies. Is it possible that individualism may also exist within this culture, especially among the younger generation? Is individualism slowly creeping in as caused by their exposure and easy access to modern technology, to higher education, mobility, interactions with other cultures, etc. Would this individualistic tendency have any influence on their religious beliefs, especially their belief on salvation? What would be the implications and challenges of these findings to the families in the Philippines? These are the questions we wish to answer in this study. This paper is structured in four parts: first, we will discuss the theoretical framework of individualism and salvation; second, we will examine the empirical attitudes on individualism and salvation; third, we will explore the relationship between individualism and salvation; and finally, we will draw some pastoral implication especially in relation to the document “Lineamenta - The Vocation and Mission of the Family in the church and Contemporary Word” (henceforth, Lineamenta). References Atkins, P. (2004). Memory and Liturgy. The Place of Memory in the Composition and Practice of Liturgy. Hampshire: Ashgate Publishing. Bauman, Z. (1993). Postmodern Ethics. Oxford/Cambridge, MA: Blackwell. Beck, U. (1992). Risk society. London: Sage Publications. Bellah, R. N. , Madsen, R., Sullivan, W., Swidler, A., Tipton, S. (1985). Habits of the Heart: Individualism and Commitment in American Life. Berkeley/Los Angeles/London: University of California Press. Berger, P. (1970). 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Photo by Sharon McCutcheon on Unsplash ABSTRACT COVID-19 highlighted a disproportionate impact upon marginalized communities that needs to be addressed. Specifically, a focus on equity rather than equality would better address and prevent the disparities seen in COVID-19. A distributive justice framework can provide this great benefit but will succeed only if the medical community engages in outreach, anti-racism measures, and listens to communities in need. INTRODUCTION COVID-19 disproportionately impacted communities of color and lower socioeconomic status, sparking political discussion about existing inequities in the US.[1] Some states amended their guidelines for allocating resources, including vaccines, to provide care for marginalized communities experiencing these inequities, but there has been no clear consensus on which guidelines states should amend or how they should be ethically grounded. In part, this is because traditional justice theories do not acknowledge the deep-seated institutional and interpersonal discrimination embedded in our medical system. Therefore, a revamped distributive justice approach that accounts for these shortcomings is needed to guide healthcare decision-making now and into the post-COVID era. BACKGROUND Three terms – health disparity, health inequities, and health equity – help frame the issue. A health disparity is defined as any difference between populations in terms of disease incidence or adverse health events, such as morbidity or mortality. In contrast, health inequities are health disparities due to avoidable systematic structures rooted in racial, social, and economic injustice.[2] For example, current data demonstrate that Black, Latino, Indigenous Americans, and those living in poverty suffer higher morbidity and mortality rates from COVID-19.[3] Finally, health equity is the opportunity for anyone to attain his or her full health potential without interference from systematic structures and factors that generate health inequities, including race, socioeconomic status, gender, ethnicity, religion, sexual orientation, or geography.[4] ANALYSIS Health inequities for people of color with COVID-19 have led to critiques of states that do not account for race in their resource allocation guidelines.[5] For example, the Massachusetts Department of Public Health revised its COVID-19 guidelines regarding resource allocation to patients with the best chance of short-term survival.[6] Critics have argued that this change addresses neither preexisting structural inequities nor provider bias that may have led to comorbidities and increased vulnerability to COVID-19. By failing to address race specifically, they argue the policy will perpetuate poorer outcomes in already marginalized groups. As the inequities in COVID-19 outcomes continue to be uncovered and the data continue to prove that marginalized communities suffered disproportionately, we, as healthcare providers, must reconsider our role in addressing the injustices. Our actions must be ethically grounded in the concept of justice. l. Primary Theories of Justice The principle of justice in medical ethics relates to how we ought to treat people and allocate resources. Multiple theories have emerged to explain how justice should be implemented, with three of the most prominent being egalitarianism, utilitarianism, and distributive. This paper argues that distributive justice is the best framework for remedying past actions and enacting systemic changes that may persistently prevent injustices. An egalitarian approach to justice states all individuals are equal and, therefore, should have identical access to resources. In the allocation of resources, an egalitarian approach would support a strict distribution of equal value regardless of one’s attributes or characteristics. Putting this theory into practice would place a premium on guidelines based upon first-come, first-served basis or random selection.[7] However, the egalitarian approach taken in the UK continues to worsen health inequities due to institutional and structural discrimination.[8] A utilitarian approach to justice emphasizes maximizing overall benefits and achieving the greatest good for the greatest number of people. When resources are limited, the utilitarian principle historically guides decision-making. In contrast to the egalitarian focus on equal distribution, utilitarianism focuses on managing distributions to maximize numerical outcomes. During the COVID-19 pandemic, guidelines for allocating resources had utilitarian goals like saving the most lives, which may prioritize the youthful and those deemed productive in society, followed by the elderly and the very ill. It is important to reconsider using utilitarian approaches as the default in the post-COVID healthcare community. These approaches fail to address past inequity, sacrificing the marginalized in their emphasis on the greatest amount of good rather than the type of good. Finally, a distributive approach to justice mandates resources should be allocated in a manner that does not infringe individual liberties to those with the greatest need. Proposed by John Rawls in a Theory of Justice, this approach requires accounting for societal inequality, a factor absent from egalitarianism and utilitarianism.[9] Naomi Zack elaborates how distributive justice can be applied to healthcare, outlining why racism is a social determinant of health that must be acknowledged and addressed.[10] Until there are parallel health opportunities and better alignment of outcomes among different social and racial groups, the underlying systemic social and economic variables that are driving the disparities must be fixed. As a society and as healthcare providers, we should be striving to address the factors that perpetuate health inequities. While genetics and other variables influence health, the data show proportionately more exposure, more cases, and more deaths in the Black American and Hispanic populations. Preexisting conditions and general health disparities are signs of health inequity that increased vulnerability. Distributive justice as a theoretical and applied framework can be applied to preventable conditions that increase vulnerability and can justify systemic changes to prevent further bias in the medical community. During a pandemic, egalitarian and utilitarian approaches to justice are prioritized by policymakers and health systems. Yet, as COVID-19 has demonstrated, they further perpetuate the death and morbidity of populations that face discrimination. These outcomes are due to policies and guidelines that overall benefit white communities over communities of color. Historically, US policy that looks to distribute resources equally (focusing on equal access instead of outcomes), in a color-blind manner, has further perpetuated poor outcomes for marginalized communities.[11] ll. Historical and Ongoing Disparities Across socio-demographic groups, the medical system exacerbates historical and current inequities. Members of marginalized races,[12] women,[13] LGBTQ people,[14] and poor people[15] experience trauma caused by discrimination, marginalization, and failure to access high-quality public and private goods. Through the unequal treatment of marginalized communities, these historic traumas continue. In the US, people of color do not receive equal and fair medical treatment. A meta-analysis found that Hispanics and Black Americans were significantly undertreated for pain compared to their white counterparts over the last 20 years.[16] This is partly due to provider bias. Through interviewing medical trainees, a study by the National Academy of Science found that half of medical students and residents harbored racist beliefs such as “Black people’s nerve endings are less sensitive than white people’s” or “Black people’s skin is thicker than white people’s skin.”[17] More than 3,000 Indigenous American women were coerced, threatened, and deliberately misinformed to ensure cooperation in forced sterilization.[18] Hispanic people have less support in seeking medical care, in receiving culturally appropriate care, and they suffer from the medical community’s lack of resources to address language barriers.[19] In the US, patients of different sexes do not receive the same quality of healthcare. Despite having greater health needs, middle-aged and older women are more likely to have fewer hospital stays and fewer physician visits compared to men of similar demographics and health risk profiles.[20] In the field of critical care, women are less likely to be admitted to the ICU, less likely to receive interventions such as mechanical ventilation, and more likely to die compared to their male ICU counterparts.[21] In the US, patients of different socioeconomic statuses do not receive the same quality of healthcare. Low-income patients are more likely to have higher rates of infant mortality, chronic disease, and a shorter life span.[22] This is partly due to the insurance-based discrimination in the medical community.[23] One in three deaths of those experiencing homelessness could have been prevented by timely and effective medical care. An individual experiencing homelessness has a life expectancy that is decades shorter than that of the average American.[24] lll. Action Needed: Policy Reform While steps need to be taken to provide equitable care in the current pandemic, including the allocation of vaccines, they may not address the historical failures of health policy, hospital policy, and clinical care to eliminate bias and ensure equal treatment of patients. According to an applied distributive justice framework, inequities must be corrected. Rather than focusing primarily on fair resource allocation, medicine must be actively anti-racist, anti-sexist, anti-transphobic, and anti-discriminatory. Evidence has shown that the health inequities caused by COVID-19 are smaller in regions that have addressed racial wealth gaps through forms of reparations.[25] Distributive justice calls for making up for the past using tools of allocation as well as tools to remedy persistent problems. For example, Brigham and Women’s Hospital in Boston, MA, began “Healing ARC,” a pilot initiative that involves acknowledgement, redress, and closure on an institutional level.[26] Acknowledgement entails informing patients about disparities at the hospital, claiming responsibility, and incorporating community ideas for redress. Redress involves a preferential admission option for Black and Hispanic patients to specialty services, especially cardiovascular services, rather than general medicine. Closure requires that community and patient stakeholders work together to ensure that a new system is in place that will continue to prioritize equity. Of note, redress could take the form of cash transfers, discounted or free care, taxes on nonprofit hospitals that exclude patients of color,[27] or race-explicit protocol changes (such as those being instituted by Brigham and Women’s Hospital that admit patients historically denied access to certain forms of medical care). In New York, for instance, the New York State Bar Association drafted the COVID-19 resolutions to ensure that emergency regulations and guidelines do not discriminate against communities of color, and even mandate that diverse patient populations be included in clinical trials.[28] Also, physicians must listen to individuals from marginalized communities to identify needs and ensure that community members take part in decision-making. The solution is not to simply build new health centers in communities of color, as this may lead to tiers of care. Rather, local communities should have a chance to impact existing hospital policy and should also use their political participation to further their healthcare interests. Distributive justice does not seek to disenfranchise groups that hold power in the system. It aims to transform the system so that those in power do not continue to obtain unfair benefits at the expense of others. The framework accounts for unjust historical oppression and current injustices in our system to provide equitable outcomes to all who access the system. In this vein, we can begin to address the flagrant disparities between communities that have always – and continue to – exist in healthcare today.[29] CONCLUSION As equality focuses on access, it currently fails to do justice. Instead of outcomes, it is time to focus on equity. A focus on equity rather than equality would better address and prevent the disparities seen in COVID-19. A distributive justice framework can gain traction in clinical decision-making guidelines and system-level reallocation of resources but will succeed only if the medical community engages in outreach, anti-racism measures, and listens to communities in need. There should be an emphasis on implementing a distributive justice framework that treats all patients equitably, accounts for historical harm, and focuses on transparency in allocation and public health decision-making. [1] APM Research Lab Staff. 2020. “The Color of Coronavirus: COVID-19 Deaths by Race and Ethnicity in the U.S.” APM Research Lab. https://www.apmresearchlab.org/covid/deaths-by-race. [2] Bharmal, N., K. P. Derose, M. Felician, and M. M. Weden. 2015. “Understanding the Upstream Social Determinants of Health.” California: RAND Corporation 1-18. https://www.rand.org/pubs/working_papers/WR1096.html. [3] Yancy, C. W. 2020. “COVID-19 and African Americans.” JAMA. 323 (19): 1891-2. https://doi.org/10.1001/jama.2020.6548; Centers for Disease Control and Prevention. 2020. “COVID-19 in Racial and Ethnic Health Disparities.” Centers for Disease Control and Prevention. https://www.cdc.gov/coronavirus/2019-ncov/community/health-equity/racial-ethnic-disparities/index.html. [4] Braveman, P., E. Arkin, T. Orleans, D. Proctor, and A. Plough. 2017. “What is Health Equity?” Robert Wood Johnson Foundation. https://www.rwjf.org/en/library/research/2017/05/what-is-health-equity-.html. [5] Bedinger, M. 2020 Apr 22. “After Uproar, Mass. Revises Guidelines on Who Gets an ICU Bed or Ventilator Amid COVID-19 Surge.” Wbur. https://www.wbur.org/commonhealth/2020/04/20/mass-guidelines-ventilator-covid-coronavirus; Wigglesworth, A. 2020 May 11. “Institutional Racism, Inequity Fuel High Minority Death Toll from Coronavirus, L.A. Officials Say.” Los Angeles Times. https://www.latimes.com/california/story/2020-05-11/institutional-racism-inequity-high-minority-death-toll-coronavirus. [6] Executive Office of Health and Human Services Department of Public Health. 2020 Oct 20. “Crises Standards of Care Planning and Guidance for the COVID-19 Pandemic.” Commonwealth of Massachusetts. https://www.mass.gov/doc/crisis-standards-of-care-planning-guidance-for-the-covid-19-pandemic. 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A. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Doubleday, 2006). [13] d'Oliveira, A. F., S. G. Diniz, and L. B. Schraiber. 2002. “Violence Against Women in Health-care Institutions: An Emerging Problem.” Lancet. 359 (9318): 1681-5. https://doi.org/10.1016/S0140-6736(02)08592-6. [14] Hafeez, H., M. Zeshan, M. A. Tahir, N. Jahan, and S. Naveed. 2017. “Health Care Disparities Among Lesbian, Gay, Bisexual, and Transgender Youth: A Literature Review. Cureus 9 (4): e1184. https://doi.org/10.7759/cureus.1184; Drescher, J., A. Schwartz, F. Casoy, et al. 2016. “The Growing Regulation of Conversion Therapy.” Journal of Medical Regulation 102 (2): 7-12. https://doi.org/10.30770/2572-1852-102.2.7; Stroumsa, D. 2014. “The State of Transgender Health Care: Policy, Law, and Medical Frameworks.” American Journal of Public Health. 104 (3): e31-8. https://doi.org/10.2105/AJPH.2013.301789. [15] Stepanikova, I., and G. R. Oates. 2017. “Perceived Discrimination and Privilege in Health Care: The Role of Socioeconomic Status and Race.” American Journal of Preventative Medicine. 52 (1s1): S86-s94. https://doi.org/10.1016/j.amepre.2016.09.024; Swartz, K. “Health Care for the Poor: For Whom, What Care, and Whose Responsibility?” In Cancian, M., and S. Danziger (Eds.). Changing Poverty, Changing Policies (New York: Russell Sage Foundation Press, 2009), 69-74. [16] Meghani, S. H., E. Byun, and R. M. Gallagher. 2012. “Time to Take Stock: A Meta-analysis and Systematic Review of Analgesic Treatment Disparities for Pain in the United States.” Pain Medicine 13 (2): 150-74. https://doi.org/10.1111/j.1526-4637.2011.01310.x; Williams, D. R., and T. D. Rucker. 2000. “Understanding and Addressing Racial Disparities in Health Care.” Health Care Financing Review 21 (4): 75-90. https://scholar.harvard.edu/davidrwilliams/dwilliam/publications/understanding-and-addressing-racial-disparities-health. [17] Hoffman, K. M., S. 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ObjectiveTo assess evidence for public health impact of syndromic surveillance.IntroductionSystematic syndromic surveillance is undergoing a transition. Building on traditional roots in bioterrorism and situational awareness, proponents are demonstrating the timeliness and informative power of syndromic surveillance data to supplement other surveillance data.MethodsWe used PubMed and Google Scholar to identify articles published since 2007 using key words of interest (e.g., syndromic surveillance in combinations with emergency, evaluation, quality assurance, alerting). The following guiding questions were used to abstract impact measures of syndromic surveillance: 1) what was the public health impact; what decisions or actions occurred because of use of syndromic surveillance data?, 2) were there specific interventions or performance measures for this impact?, and 3) how, and by whom, was this information used?ResultsThirty-five papers were included. Almost all articles (n=33) remarked on the ability of syndromic surveillance to improve public health because of timeliness and/or accuracy of data. Thirty-four articles mentioned that syndromic surveillance data was used or could be useful. However, evidence of health impact directly attributable to syndromic surveillance efforts were lacking. Two articles described how syndromic data were used for decision-making. One article measured the effect of data utilization.ConclusionsWithin the syndromic surveillance literature instances of a conceptual shift from detection to practical response are plentiful. As the field of syndromic surveillance continues to evolve and is used by public health institutions, further evaluation of data utility and impact is needed.ReferencesAyala, A., Berisha, V., Goodin, K., Pogreba-Brown, K., Levy, C., McKinney, B., Koski, L., & Imholte, S. (2016). 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“I’m fat–and it’s okay! It doesn’t mean I’m stupid, or ugly, or lazy, or selfish. I’m fat!” so proclaims Joy Nash in her YouTube video, A Fat Rant. “Fat! It’s three little letters–what are you afraid of?!” This is the question I pose to my class on day one of Fat Studies. Sadly, many college students do fear fat, and negative attitudes toward fat people are quite prevalent in this population (Ambwani et al. 366). As I teach it, Fat Studies is cross-listed between Psychology and Gender Studies. However, most students who enrol have majors in Psychology or other behavioural health science fields in which weight bias is particularly pronounced (Watkins and Concepcion 159). Upon finding stronger bias among third- versus first-year Physical Education students, O’Brien, Hunter, and Banks (308) speculated that the weight-centric curriculum that typifies this field actively engenders anti-fat attitudes. Based on their exploration of textbook content, McHugh and Kasardo (621) contend that Psychology too is complicit in propagating weight bias by espousing weight-centric messages throughout the curriculum. Such messages include the concepts that higher body weight invariably leads to poor health, weight control is simply a matter of individual choice, and dieting is an effective means of losing weight and improving health (Tylka et al.). These weight-centric tenets are, however, highly contested. For instance, there exists a body of research so vast that it has its own name, the “obesity paradox” literature. This literature (McAuley and Blair 773) entails studies that show that “obese” persons with chronic disease have relatively better survival rates and that a substantial portion of “overweight” and “obese” individuals have levels of metabolic health similar to or better than “normal” weight individuals (e.g., Flegal et al. 71). Finally, the “obesity paradox” literature includes studies showing that cardiovascular fitness is a far better predictor of mortality than weight. In other words, individuals may be both fit and fat, or conversely, unfit and thin (Barry et al. 382). In addition, Tylka et al. review literature attesting to the complex causes of weight status that extend beyond individual behaviour, ranging from genetic predispositions to sociocultural factors beyond personal control. Lastly, reviews of research on dieting interventions show that these are overwhelmingly ineffective in producing lasting weight loss or actual improvements in health and may in fact lead to disordered eating and other unanticipated adverse consequences (e.g., Bacon and Aphramor; Mann et al. 220; Salas e79; Tylka et al.).The newfound, interdisciplinary field of scholarship known as Fat Studies aims to debunk weight-centric misconceptions by elucidating findings that counter these mainstream suppositions. Health At Every Size® (HAES), a weight-neutral approach to holistic well-being, is an important facet of Fat Studies. The HAES paradigm advocates intuitive eating and pleasurable physical activity for health rather than restrictive dieting and regimented exercise for weight loss. HAES further encourages body acceptance of self and others regardless of size. Empirical evidence shows that HAES-based interventions improve physical and psychological health without harmful side-effects or high dropout rates associated with weight loss interventions (Bacon and Aphramor; Clifford et al. “Impact of Non-Diet Approaches” 143). HAES, like the broader field of Fat Studies, seeks to eradicate weight-based discrimination, positioning weight bias as a social justice issue that intersects with oppression based on other areas of difference such as gender, race, and social class. Much like Queer Studies, Fat Studies seeks to reclaim the word, fat, thus stripping it of its pejorative connotations. As Nash asserts in her video, “Fat is a descriptive physical characteristic. It’s not an insult, or an obscenity, or a death sentence!” As an academic discipline, Fat Studies is expanding its visibility and reach. The Fat Studies Reader, the primary source of reading for my course, provides a comprehensive overview of the field (Rothblum and Solovay 1). This interdisciplinary anthology addresses fat history and activism, fat as social inequality, fat in healthcare, and fat in popular culture. Ward (937) reviews this and other recently-released fat-friendly texts. The field features its own journal, Fat Studies: An Interdisciplinary Journal of Body Weight and Society, which publishes original research, overview articles, and reviews of assorted media. Both the Popular Culture Association and National Women’s Studies Association have special interest groups devoted to Fat Studies, and the American Psychological Association’s Division on the Psychology of Women has recently formed a task force on sizism (Bergen and Carrizales 22). Furthermore, Fat Studies conferences have been held in Australia and New Zealand, and the third annual Weight Stigma Conference will occur in Iceland, September 2015. Although the latter conference is not necessarily limited to those who align themselves with Fat Studies, keynote speakers include Ragen Chastain, a well-known member of the fat acceptance movement largely via her blog, Dances with Fat. The theme of this year’s conference, “Institutionalised Weightism: How to Challenge Oppressive Systems,” is consistent with Fat Studies precepts:This year’s theme focuses on the larger social hierarchies that favour thinness and reject fatness within western culture and how these systems have dictated the framing of fatness within the media, medicine, academia and our own identities. What can be done to oppose systemised oppression? What can be learned from the fight for social justice and equality within other arenas? Can research and activism be united to challenge prevailing ideas about fat bodies?Concomitantly, Fat Studies courses have begun to appear on college campuses. Watkins, Farrell, and Doyle-Hugmeyer (180) identified and described four Fat Studies and two HAES courses that were being taught in the U.S. and abroad as of 2012. Since then, a Fat Studies course has been taught online at West Virginia University and another will soon be offered at Washington State University. Additionally, a new HAES class has been taught at Saint Mary’s College of California during the last two academic years. Cameron (“Toward a Fat Pedagogy” 28) describes ways in which nearly 30 instructors from five different countries have incorporated fat studies pedagogy into university courses across an array of academic areas. This growing trend is manifested in The Fat Pedagogy Reader (Russell and Cameron) due out later this year. In this article, I describe content and pedagogical strategies that I use in my Fat Studies course. I then share students’ qualitative reactions, drawing upon excerpts from written assignments. During the term reported here, the class was comprised of 17 undergraduate and 5 graduate students. Undergraduate majors included 47% in Psychology, 24% in Women Studies, 24% in various other College of Liberal Arts fields, and 6% in the College of Public Health. Graduate majors included 40% in the College of Public Health and 60% in the College of Education. Following submission of final grades, students provided consent via email allowing written responses on assignments to be anonymously incorporated into research reports. Assignments drawn upon for this report include weekly reading reactions to specific journal articles in which students were to summarise the main points, identify and discuss a specific quote or passage that stood out to them, and consider and discuss applicability of the information in the article. This report also utilises responses to a final assignment in which students were to articulate take-home lessons from the course.Despite the catalogue description, many students enter Fat Studies with a misunderstanding of what the course entails. Some admitted that they thought the course was about reducing obesity and the presumed health risks associated with this alleged pathological condition (Watkins). Others understood, but were somewhat dubious, at least at the outset, “Before I began this class, I admit that I was skeptical of what Fat Studies meant.” Another student experienced “a severe cognitive dissonance” between the Fat Studies curriculum and that of a previous behavioural health class:My professor spent the entire quarter spouting off statistics, such as the next generation of children will be the first generation to have a lower life expectancy than their parents and the ever increasing obesity rates that are putting such a tax on our health care system, and I took her words to heart. I was scared for myself and for the populations I would soon be working with. I was worried that I was destined to a chronic disease and bothered that my BMI was two points above ‘normal.’ I believed everything my professor alluded to on the danger of obesity because it was things I had heard in the media and was led to believe all my life.Yet another related, “At first, I will be honest, it was hard for me to accept a lot of this information, but throughout the term every class changed my mind about my view of fat people.” A few students have voiced even greater initial resistance. During a past term, one student lamented that the material represented an attack on her intended behavioural health profession. Cameron (“Learning to Teach Everybody”) describes comparable reactions among students in her Critical Obesity course taught within a behavioural health science unit. Ward (937) attests that, even in Gender Studies, fat is the topic that creates the most controversy. Similarly, she describes students’ immense discomfort when asked to entertain perspectives that challenge deeply engrained ideas inculcated by our culture’s “obesity epidemic.” Discomfort, however, is not necessarily antithetical to learning. In prompting students to unlearn “the biomedically-informed truth of obesity, namely that fat people are unfit, unhealthy, and in need of ‘saving’ through expert interventions,” Moola at al. recommend equipping them with an “ethics of discomfort” (217). No easy task, “It requires courage to ask our students to forgo the security of prescriptive health messaging in favour of confusion and uncertainty” (221). I encourage students to entertain conflicting perspectives by assigning empirically-based articles emanating from peer-reviewed journals in their own disciplines that challenge mainstream discourses on obesity (e.g., Aphramor; Bombak e60; Tomiyama, Ahlstrom, and Mann 861). Students whose training is steeped in the scientific method seem to appreciate having quantitative data at their disposal to convince themselves–and their peers and professors–that widely held weight-centric beliefs and practices may not be valid. One student remarked, “Since I have taken this course, I feel like I am prepared to discuss the fallacy of the weight-health relationship,” citing specific articles that would aid in the effort. Likewise, Cameron’s (“Learning to Teach Everybody”) students reported a need to read research reports in order to begin questioning long-held beliefs.In addition, I assign readings that provide students with the opportunity to hear the voices of fat people themselves, a cornerstone of Fat Studies. Besides chapters in The Fat Studies Reader authored by scholars and activists who identify as fat, I assign qualitative articles (e.g., Lewis et al.) and narrative reports (e.g., Pause 42) in which fat people describe their experiences with weight and weight bias. Additionally, I provide positive images of fat people via films and websites (Clifford et al. HAES®; Watkins; Watkins and Doyle-Hugmeyer 177) in order to counteract the preponderance of negative, dehumanising portrayals in popular media (e.g., Ata and Thompson 41). In response, a student stated:One of the biggest things I took away from this term was the confidence I found in fat women through films and stories. They had more confidence than I have seen in any tiny girl and owned the body they were given.I introduce “normal” weight allies as well, most especially Linda Bacon whose treatise on thin privilege tends to set the stage for viewing weight bias as a form of oppression (Bacon). One student observed, “It was a relief to be able to read and talk about weight oppression in a classroom setting for once.” Another appreciated that “The class did a great job at analysing fat as oppression and not like a secondhand oppression as I have seen in my past classes.” Typically, fat students were already aware of weight-based privilege and oppression, often painfully so. Thinner students, however, were often astonished by this concept, several describing Bacon’s article as “eye-opening.” In reaction, many vowed to act as allies:This class has really opened my eyes and prepared me to be an ally to fat people. It will be difficult for some time while I try to get others to understand my point of view on fat people but I believe once there are enough allies, people’s minds will really start changing and it will benefit everyone for the better.Pedagogically, I choose to share my own experiences as they relate to course content and encourage students, at least in their written assignments, to do the same. Other instructors refrain from this practice for fear of reinforcing traditional discourses or eliciting detrimental reactions from students (Watkins, Farrell, and Doyle-Hugmeyer 191). Nevertheless, this tack seems to work well in my course, with many students opting to disclose their relevant circumstances during classroom discussions: Throughout the term I very much valued and appreciated when classmates would share their experiences. I love listening and hearing to others experiences and I think that is a great way to understand the material and learn from one another.It really helped to read different articles and hear classmates discuss and share stories that I was able to relate to. The idea of hearing people talk about issues that I thought I was the only one who dealt with was so refreshing and enlightening.The structure of this class allowed me to learn how this information is applicable to my life and made it deeper than just memorising information.Thus far, across three terms, no student has described iatrogenic effects from this process. In fact, most attribute positive transformations to the class. These include enhanced body acceptance of self and others: This class decreased my fat phobia towards others and gave me a better understanding about the intersectionality of one’s weight. For example, I now feel that I no longer view my family in a fat phobic way and I also feel responsible for educating my brother and helping him develop a strong self-esteem regardless of his size.I never thought this class would change my life, almost save my life. Through studies shown in class and real life people following their dreams, it made my mind completely change about how I view my body and myself.I can only hope that in the future, I will be more forgiving, tolerant, and above all accepting of myself, much less others. Regardless of a person’s shape and size, we are all beautiful, and while I’m just beginning to understand this, it can only get better from here.Students also reported becoming more savvy consumers of weight-centric media messages as well as realigning their eating and exercise behaviour in accordance with HAES: I find myself disgusted at the television now, especially with the amount of diet ads, fitness club ads, and exercise equipment ads all aimed at making a ‘better you.’ I now know that I would never be better off with a SlimFast shake, P90X, or a Total Gym. I would be better off eating when I’m hungry, working out because it is fun, and still eating Thin Mints when I want to. Prior to this class, I would work out rigorously, running seven miles a day. Now I realise why at times I dreaded to work out, it was simply a mathematical system to burn the energy that I had acquired earlier in the day. Instead what I realise I should do is something I enjoy, that way I will never get tired of whatever I am doing. While I do enjoy running, other activities would bring more joy while engaging in a healthy lifestyle like hiking or mountain biking.I will never go on another diet. I will stop choosing exercises I don’t love to do. I will not weigh myself every single day hoping for the number on the scale to change.A reduction in self-weighing was perhaps the most frequent behaviour change that students expressed. This is particularly valuable in that frequent self-weighing is associated with disordered eating and unhealthy weight control behaviours (Neumark-Sztainer et al. 811):I have realised that the number on the scale is simply a number on the scale. That number does not define who you are. I have stopped weighing myself every morning. I put the scale in the storage closet so I don’t have to look at it. I even encouraged my roommate to stop weighing herself too. What has been most beneficial for me to take away from this class is the notion that the number on the scale has so much less to do with fitness levels than most people understand. Coming from a numbers obsessed person like myself, this class has actually gotten me to leave the scales behind. I used to weigh myself every single day and my self-confidence reflected whether I was up or down in weight from the day before. It seems so silly to me now. From this class, I take away a new outlook on body diversity. I will evaluate who I am for what I do and not represent myself with a number. I’m going to have my cake this time, and actually eat it too!Finally, students described ways in which they might carry the concepts from Fat Studies into their future professions: I want to go to law school. This model is something I will work toward in the fight for social justice.As a teacher and teacher of teachers, I plan to incorporate discussions on size diversity and how this should be addressed within the field of adapted physical education.I do not know how I would have gone forward if I had never taken this class. I probably would have continued to use weight loss as an effective measure of success for both nutrition and physical activity interventions. I will never be able to think about the obesity prevention movement in the same way.Since I am working toward being a clinical psychologist, I don’t want to have a client who is pursuing weight loss and then blindly believe that they need to lose weight. I’d rather be of the mindset that every person is unique, and that there are other markers of health at every size.Jones and Hughes-Decatur (59) call for increased scholarship illustrating and evaluating critical body pedagogies so that teachers might provide students with tools to critique dominant discourses, helping them forge healthy relationships with their own bodies in the process. As such, this paper describes elements of a Fat Studies class that other instructors may choose to adopt. It additionally presents qualitative data suggesting that students came to think about fat and fat people in new and divergent ways. Qualitative responses also suggest that students developed better body image and more adaptive eating and exercise behaviours throughout the term. Although no students have yet described lasting adverse effects from the class, one stated that she would have preferred less of a focus on health and more of a focus on issues such as fat fashion. Indeed, some Fat Studies scholars (e.g., Lee) advocate separating discussions of weight bias from discussions of health status to avoid stigmatising fat people who do experience health problems. While concerns about fostering healthism within the fat acceptance movement are valid, as a behavioural health professional with an audience of students training in these fields, I have chosen to devote three weeks of our ten week term to this subject matter. Depending on their academic background, others who teach Fat Studies may choose to emphasise different aspects such as media representations or historical connotations of fat.Nevertheless, the preponderance of positive comments evidenced throughout students’ assignments may certainly be a function of social desirability. Although I explicitly invite critique, and in fact assign readings (e.g., Welsh 33) and present media that question HAES and Fat Studies concepts, students may still feel obliged to articulate acceptance of and transformations consistent with the principles of these movements. As a more objective assessment of student outcomes, I am currently conducting a quantitative evaluation, in which I remain blind to students’ identities, of this year’s Fat Studies course compared to other upper division/graduate Psychology courses, examining potential changes in weight bias, body image and dieting behaviour, adherence to appearance-related media messages, and obligatory exercise behaviour. I postulate results akin to those of Humphrey, Clifford, and Neyman Morris (143) who found reductions in weight bias, improved body image, and improved eating behaviour among college students as a function of their HAES course. 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On 17 January 2013, Wired chose the smart contact lens as one of “7 Massive Ideas That Could Change the World” describing a Google-led research project. Wired explains that the inventor, Dr. Babak Parviz, wants to build a microsystem on a contact lens: “Using radios no wider than a few human hairs, he thinks these lenses can augment reality and incidentally eliminate the need for displays on phones, PCs, and widescreen TVs”. Explained further in other sources, the technology entails an antenna, circuits embedded into a contact lens, GPS, and an LED to project images on the eye, creating a virtual display (Solve for X). Wi-Fi would stream content through a transparent screen over the eye. One patent describes a camera embedded in the lens (Etherington). Another mentions medical sensing, such as glucose monitoring of tears (Goldman). In other words, Google proposes an imagined future when we use contact lenses to search the Internet (and be searched by it), shop online, communicate with friends, work, navigate maps, swipe through Tinder, monitor our health, watch television, and, by that time, probably engage in a host of activities not yet invented. Often referred to as a bionic contact, the smart contact lens would signal a weighty shift in the way we work, socialize, and frame our online identities. However, speculative discussion over this radical shift in personal computing, rarely if ever, includes consideration of how the body, acting as a host to digital information, will manage to assimilate not only significant affordances, but also significant constraints and vulnerabilities. At this point, for most people, the smart contact lens is just an idea. Is a new medium of communication started when it is launched in an advertising campaign? When we Like it on Facebook? If we chat about it during a party amongst friends? Or, do a critical mass of people actually have to be using it to say it has started? One might say that Apple’s Macintosh computer started as a media platform when the world heard about the famous 1984 television advertisement aired during the American NFL Super Bowl of that year. Directed by Ridley Scott, the ad entails an athlete running down a passageway and hurling a hammer at a massive screen depicting cold war style rulers expounding state propaganda. The screen explodes freeing those imprisoned from their concentration camp existence. The direct reference to Orwell’s 1984 serves as a metaphor for IBM in 1984. PC users were made analogous to political prisoners and IBM served to represent the totalitarian government. The Mac became a something that, at the time, challenged IBM, and suggested an alternative use for the desktop computer that had previously been relegated for work rather than life. Not everyone bought a Mac, but the polemical ad fostered the idea that Mac was certainly the start of new expectations, civic identities, value-systems, and personal uses for computers. The smart contact lens is another startling start. News of it shocks us, initiates social media clicks and forwards, and instigates dialogue. But, it also indicates the start of a new media paradigm that is already undergoing popular adoption as it is announced in mainstream news and circulated algorithmically across media channels. Since 2008, news outlets like CNN, The New York Times, The Globe and Mail, Asian International News, United News of India, The Times of London and The Washington Post have carried it, feeding the buzz in circulation that Google intends. Attached to the wave of current popular interest generated around any technology claiming to be “wearable,” a smart contact lens also seems surreptitious. We would no longer hold smartphones, but hide all of that digital functionality beneath our eyelids. Its emergence reveals the way commercial models have dramatically changed. The smart contact lens is a futuristic invention imagined for us and about us, but also a sensationalized idea socializing us to a future that includes it. It is also a real device that Parviz (with Google) has been inventing, promoting, and patenting for commercial applications. All of these workings speak to a broader digital culture phenomenon. We argue that the smart contact lens discloses a process of nascent posthuman adaptation, launched in an era that celebrates wearable media as simultaneously astonishing and banal. More specifically, we adopt technology based on our adaptation to it within our personal, political, medial, social, and biological contexts, which also function in a state of flux. N. Katherine Hayles writes that “Contemporary technogenesis, like evolution in general, is not about progress ... rather, contemporary technogenesis is about adaptation, the fit between organisms and their environments, recognizing that both sides of the engagement (human and technologies) are undergoing coordinated transformations” (81). This article attends to the idea that in these early stages, symbolic acts of adaptation signal an emergent medium through rhetorical processes that society both draws from and contributes to. In terms of project scope, this article contributes a focused analysis to a much larger ongoing digital rhetoric project. For the larger project, we conducted a discourse analysis on a collection of international publications concerning Babak Parviz and the invention. We searched for and collected newspaper stories, news broadcasts, YouTube videos from various sources, academic journal publications, inventors’ conference presentations, and advertising, all published between January 2008 and May 2014, generating a corpus of more than 600 relevant artifacts. Shortly after this time, Dr. Parviz, a Professor at the University of Washington, left the secretive GoogleX lab and joined Amazon.com (Mac). For this article we focus specifically on the idea of beginnings or genesis and how digital spaces increasingly serve as the grounds for emergent digital cultural phenomena that are rarely recognized as starting points. We searched through the corpus to identify a few exemplary international mainstream news stories to foreground predominant tropes in support of the claim we make that smart contacts lenses are a startling idea. Content producers deliberately use astonishment as a persuasive device. We characterize the idea of a smart contact lens cast in rhetorical terms in order to reveal how its allure works as a process of adaptation. Rhetorician and philosopher, Kenneth Burke writes that “rhetorical language is inducement to action (or to attitude)” (42). A rhetorical approach is instrumental because it offers a model to explain how we deploy, often times, manipulative meaning as senders and receivers while negotiating highly complex constellations of resources and contexts. Burke’s rhetorical theory can show how messages influence and become influenced by powerful hierarchies in discourse that seem transparent or neutral, ones that seem to fade into the background of our consciousness. For this article, we also concentrate on rhetorical devices such as ethos and the inventor’s own appeals through different modes of communication. Ethos was originally proposed by Aristotle to identify speaker credibility as a persuasive tactic. Addressed by scholars of rhetoric for centuries, ethos has been reconfigured by many critical theorists (Burke; Baumlin Ethos; Hyde). Baumlin and Baumlin suggest that “ethos describes an audience’s projection of authority and trustworthiness onto the speaker ... ethos suggests that the ethical appeal to be a radically psychological event situated in the mental processes of the audience – as belonging as much to the audience as to the actual character of a speaker” (Psychology 99). Discussed in the next section, our impression of Parviz and his position as inventor plays a dramatic role in the surfacing of the smart contact lens. Digital Rhetoric is an “emerging scholarly discipline concerned with the interpretation of computer-generated media as objects of study” (Losh 48). In an era when machine-learning algorithms become the messengers for our messages, which have become commodity items operating across globalized, capitalist networks, digital rhetoric provides a stable model for our approach. It leads us to demonstrate how this emergent medium and invention, the smart contact lens, is born amid new digital genres of speculative communication circulated in the everyday forums we engage on a daily basis. Smart Contact Lenses, Sensationalism, and Identity One relevant site for exploration into how an invention gains ethos is through writing or video penned or produced by the inventor. An article authored by Parviz in 2009 discusses his invention and the technical advancements that need to be made before the smart contact lens could work. He opens the article using a fictional and sensationalized analogy to encourage the adoption of his invention: The human eye is a perceptual powerhouse. It can see millions of colors, adjust easily to shifting light conditions, and transmit information to the brain at a rate exceeding that of a high-speed Internet connection.But why stop there?In the Terminator movies, Arnold Schwarzenegger’s character sees the world with data superimposed on his visual field—virtual captions that enhance the cyborg’s scan of a scene. In stories by the science fiction author Vernor Vinge, characters rely on electronic contact lenses, rather than smartphones or brain implants, for seamless access to information that appears right before their eyes. Identity building is made to correlate with smart contact lenses in a manner that frames them as exciting. Coming to terms with them often involves casting us as superhumans, wielding abilities that we do not currently possess. One reason for embellishment is because we do not need digital displays on the eyes, so the motive to use them must always be geared to transcending our assumed present condition as humans and society members. Consequently, imagination is used to justify a shift in human identity along a future trajectory.This passage above also instantiates a transformation from humanist to posthumanist posturing (i.e. “the cyborg”) in order to incent the adoption of smart contact lenses. It begins with the bold declarative statement, “The human eye is a perceptual powerhouse,” which is a comforting claim about our seemingly human superiority. Indexing abstract humanist values, Parviz emphasizes skills we already possess, including seeing a plethora of colours, adjusting to light on the fly, and thinking fast, indeed faster than “a high-speed Internet connection”. However, the text goes on to summon the Terminator character and his optic feats from the franchise of films. Filmic cyborg characters fulfill the excitement that posthuman rhetoric often seems to demand, but there is more here than sensationalism. Parviz raises the issue of augmenting human vision using science fiction as his contextualizing vehicle because he lacks another way to imbricate the idea. Most interesting in this passage is the inventor’s query “But why stop there?” to yoke the two claims, one biological (i.e., “The human eye is a perceptual powerhouse”) and one fictional (i.e. Terminator, Vernor Vinge characters). The query suggests, Why stop with human superiority, we may as well progress to the next level and embrace a smart contact lens just as fictional cyborgs do. The non-threatening use of fiction makes the concept seem simultaneously exciting and banal, especially because the inventor follows with a clear description of the necessary scientific engineering in the rest of the article. This rhetorical act signifies the voice of a technoelite, a heavily-funded cohort responding to global capitalist imperatives armed with a team of technologists who can access technological advancements and imbue comments with an authority that may extend beyond their fields of expertise, such as communication studies, sociology, psychology, or medicine. The result is a powerful ethos. The idea behind the smart contact lens maintains a degree of respectability long before a public is invited to use it.Parviz exhumes much cultural baggage when he brings to life the Terminator character to pitch smart contact lenses. The Terminator series of films has established the “Arnold Schwarzenegger” character a cultural mainstay. Each new film reinvented him, but ultimately promoted him within a convincing dystopian future across the whole series: The Terminator (Cameron), Terminator 2: Judgment Day (Cameron), Terminator 3: Rise of the Machines (Mostow), Terminator Salvation (McG) and Terminator Genisys (Taylor) (which appeared in 2015 after Parviz’s article). Recently, several writers have addressed how cyborg characters figure significantly in our cultural psyche (Haraway, Bukatman; Leaver). Tama Leaver’s Artificial Culture explores the way popular, contemporary, cinematic, science fiction depictions of embodied Artificial Intelligence, such as the Terminator cyborgs, “can act as a matrix which, rather than separating or demarcating minds and bodies or humanity and the digital, reinforce the symbiotic connection between people, bodies, and technologies” (31). Pointing out the violent and ultimately technophobic motive of The Terminator films, Leaver reads across them to conclude nevertheless that science fiction “proves an extremely fertile context in which to address the significance of representations of Artificial Intelligence” (63).Posthumanism and TechnogenesisOne reason this invention enters the public’s consciousness is its announcement alongside a host of other technologies, which seem like parts of a whole. We argue that this constant grouping of technologies in the news is one process indicative of technogenesis. For example, City A.M., London’s largest free commuter daily newspaper, reports on the future of business technology as a hodgepodge of what ifs: As Facebook turns ten, and with Bill Gates stepping down as Microsoft chairman, it feels like something is drawing to an end. But if so, it is only the end of the technological revolution’s beginning ... Try to look ahead ten years from now and the future is dark. Not because it is bleak, but because the sheer profusion of potential is blinding. Smartphones are set to outnumber PCs within months. After just a few more years, there are likely to be 3bn in use across the planet. In ten years, who knows – wearables? smart contact lenses? implants? And that’s just the start. The Internet of Things is projected to be a $300bn (£183bn) industry by 2020. (Sidwell) This reporting is a common means to frame the commodification of technology in globalized business news that seeks circulation as much as it does readership. But as a text, it also posits how individuals frame the future and their participation with it (Pedersen). Smart contacts appear to move along this exciting, unstoppable trajectory where the “potential is blinding”. The motive is to excite and scare. However, simultaneously, the effect is predictable. We are quite accustomed to this march of innovations that appears everyday in the morning paper. We are asked to adapt rather than question, consequently, we never separate the parts from the whole (e.g., “wearables? smart contact lenses? Implants”) in order to look at them critically.In coming to terms with Cary Wolf’s definition of posthumanism, Greg Pollock writes that posthumanism is the questioning that goes on “when we can no longer rely on ‘the human’ as an autonomous, rational being who provides an Archimedean point for knowing about the world (in contrast to “humanism,” which uses such a figure to ground further claims)” (208). With similar intent, N. Katherine Hayles formulating the term technogenesis suggests that we are not really progressing to another level of autonomous human existence when we adopt media, we are in effect, adapting to media and media are also in a process of adapting to us. She writes: As digital media, including networked and programmable desktop stations, mobile devices, and other computational media embedded in the environment, become more pervasive, they push us in the direction of faster communication, more intense and varied information streams, more integration of humans and intelligent machines, and more interactions of language with code. These environmental changes have significant neurological consequences, many of which are now becoming evident in young people and to a lesser degree in almost everyone who interacts with digital media on a regular basis. (11) Following Hayles, three actions or traits characterize adaptation in a manner germane to the technogenesis of media like smart contact lenses. The first is “media embedded in the environment”. The trait of embedding technology in the form of sensors and chips into external spaces evokes the onset of The Internet of Things (IoT) foundations. Extensive data-gathering sensors, wireless technologies, mobile and wearable components integrated with the Internet, all contribute to the IoT. Emerging from cloud computing infrastructures and data models, The IoT, in its most extreme, involves a scenario whereby people, places, animals, and objects are given unique “embedded” identifiers so that they can embark on constant data transfer over a network. In a sense, the lenses are adapted artifacts responding to a world that expects ubiquitous networked access for both humans and machines. Smart contact lenses will essentially be attached to the user who must adapt to these dynamic and heavily mediated contexts.Following closely on the first, the second point Hayles makes is “integration of humans and intelligent machines”. The camera embedded in the smart contact lens, really an adapted smartphone camera, turns the eye itself into an image capture device. By incorporating them under the eyelids, smart contact lenses signify integration in complex ways. Human-machine amalgamation follows biological, cognitive, and social contexts. Third, Hayles points to “more interactions of language with code.” We assert that with smart contact lenses, code will eventually govern interaction between countless agents in accordance with other smart devices, such as: (1) exchanges of code between people and external nonhuman networks of actors through machine algorithms and massive amalgamations of big data distributed on the Internet;(2) exchanges of code amongst people, human social actors in direct communication with each other over social media; and (3) exchanges of coding and decoding between people and their own biological processes (e.g. monitoring breathing, consuming nutrients, translating brainwaves) and phenomenological (but no less material) practices (e.g., remembering, grieving, or celebrating). The allure of the smart contact lens is the quietly pressing proposition that communication models such as these will be radically transformed because they will have to be adapted to use with the human eye, as the method of input and output of information. Focusing on genetic engineering, Eugene Thacker fittingly defines biomedia as “entail[ing] the informatic recontextualization of biological components and processes, for ends that may be medical or nonmedical (economic, technical) and with effects that are as much cultural, social, and political as they are scientific” (123). He specifies, “biomedia are not computers that simply work on or manipulate biological compounds. Rather, the aim is to provide the right conditions, such that biological life is able to demonstrate or express itself in a particular way” (123). Smart contact lenses sit on the cusp of emergence as a biomedia device that will enable us to decode bodily processes in significant new ways. The bold, technical discourse that announces it however, has not yet begun to attend to the seemingly dramatic “cultural, social, and political” effects percolating under the surface. Through technogenesis, media acclimatizes rapidly to change without establishing a logic of the consequences, nor a design plan for emergence. Following from this, we should mention issues such as the intrusion of surveillance algorithms deployed by corporations, governments, and other hegemonic entities that this invention risks. If smart contact lenses are biomedia devices inspiring us to decode bodily processes and communicate that data for analysis, for ourselves, and others in our trust (e.g., doctors, family, friends), we also need to be wary of them. David Lyon warns: Surveillance has spilled out of its old nation-state containers to become a feature of everyday life, at work, at home, at play, on the move. So far from the single all-seeing eye of Big Brother, myriad agencies now trace and track mundane activities for a plethora of purposes. Abstract data, now including video, biometric, and genetic as well as computerized administrative files, are manipulated to produce profiles and risk categories in a liquid, networked system. The point is to plan, predict, and prevent by classifying and assessing those profiles and risks. (13) In simple terms, the smart contact lens might disclose the most intimate information we possess and leave us vulnerable to profiling, tracking, and theft. Irma van der Ploeg presupposed this predicament when she wrote: “The capacity of certain technologies to change the boundary, not just between what is public and private information but, on top of that, between what is inside and outside the human body, appears to leave our normative concepts wanting” (71). The smart contact lens, with its implied motive to encode and disclose internal bodily information, needs considerations on many levels. Conclusion The smart contact lens has made a digital beginning. We accept it through the mass consumption of the idea, which acts as a rhetorical motivator for media adoption, taking place long before the device materializes in the marketplace. This occurrence may also be a sign of our “posthuman predicament” (Braidotti). We have argued that the smart contact lens concept reveals our posthuman adaptation to media rather than our reasoned acceptance or agreement with it as a logical proposition. By the time we actually squabble over the price, express fears for our privacy, and buy them, smart contact lenses will long be part of our everyday culture. References Baumlin, James S., and Tita F. Baumlin. “On the Psychology of the Pisteis: Mapping the Terrains of Mind and Rhetoric.” Ethos: New Essays in Rhetorical and Critical Theory. Eds. James S. Baumlin and Tita F. Baumlin. Dallas: Southern Methodist University Press, 1994. 91-112. Baumlin, James S., and Tita F. Baumlin, eds. Ethos: New Essays in Rhetorical and Critical Theory. Dallas: Southern Methodist University Press, 1994. Bilton, Nick. “A Rose-Colored View May Come Standard.” The New York Times, 4 Apr. 2012. Braidotti, Rosi. The Posthuman. Cambridge: Polity, 2013. Bukatman, Scott. Terminal Identity: The Virtual Subject in Postmodern Science Fiction. Durham: Duke University Press, 1993. Burke, Kenneth. A Rhetoric of Motives. Berkeley: University of California Press, 1950. Cameron, James, dir. The Terminator. Orion Pictures, 1984. DVD. Cameron, James, dir. Terminator 2: Judgment Day. Artisan Home Entertainment, 2003. DVD. Etherington, Darrell. “Google Patents Tiny Cameras Embedded in Contact Lenses.” TechCrunch, 14 Apr. 2014. Goldman, David. “Google to Make Smart Contact Lenses.” CNN Money 17 Jan. 2014. Haraway, Donna. Simians, Cyborgs and Women: The Reinvention of Nature. London: Free Association Books, 1991. Hayles, N. Katherine. How We Think: Digital Media and Contemporary Technogenesis. Chicago: University of Chicago, 2012. Hyde, Michael. The Ethos of Rhetoric. Columbia: University of South Carolina Press, 2004. Leaver, Tama. Artificial Culture: Identity, Technology, and Bodies. New York: Routledge, 2012. Losh, Elizabeth. Virtualpolitik: An Electronic History of Government Media-Making in a Time of War, Scandal, Disaster, Miscommunication, and Mistakes. Boston: MIT Press. 2009. Lyon, David, ed. Surveillance as Social Sorting: Privacy, Risk and Digital Discrimination. New York: Routledge, 2003. Mac, Ryan. “Amazon Lures Google Glass Creator Following Phone Launch.” Forbes.com, 14 July 2014. McG, dir. Terminator Salvation. Warner Brothers, 2009. DVD. Mostow, Jonathan, dir. Terminator 3: Rise of the Machines. Warner Brothers, 2003. DVD. Parviz, Babak A. “Augmented Reality in a Contact Lens.” IEEE Spectrum, 1 Sep. 2009. Pedersen, Isabel. Ready to Wear: A Rhetoric of Wearable Computers and Reality-Shifting Media. Anderson, South Carolina: Parlor Press, 2013. Pollock, Greg. “What Is Posthumanism by Cary Wolfe (2009).” Rev. of What is Posthumanism?, by Cary Wolfe. Journal for Critical Animal Studies 9.1/2 (2011): 235-241. Sidwell, Marc. “The Long View: Bill Gates Is Gone and the Dot-com Era Is Over: It's Only the End of the Beginning.” City A.M., 7 Feb. 2014. “Solve for X: Babak Parviz on Building Microsystems on the Eye.” YouTube, 7 Feb. 2012. Taylor, Alan, dir. Terminator: Genisys. Paramount Pictures, 2015. DVD. Thacker, Eugene “Biomedia.” Critical Terms for Media Studies. Eds. W.J.T Mitchell and Mark Hansen, Chicago: Chicago Press, 2010. 117-130. Van der Ploeg, Irma. “Biometrics and the Body as Information.” Surveillance as Social Sorting: Privacy, Risk and Digital Discrimination. Ed. David Lyon. New York: Routledge, 2003. 57-73. Wired Staff. “7 Massive Ideas That Could Change the World.” Wired.com, 17 Jan. 2013.

Introduction As the country with the fifth largest population in the world, Indonesia is a massive potential market for mobile technology adoption and development. Despite an annual per capita income of only $1,280 USD (World Bank), there are 63 million mobile phone users in Indonesia (Suhartono, sec. 1.7) and it is predicted to reach 80 million in 2007 (Jakarta Post 1). Mobile phones are not only a symbol of Indonesian modernity (Barendregt 5), but like other communication technology can become a platform through which to explore socio-political issues (Winner 28). In this article we explore the role mobile phone technology in contemporary forms of social, intimate, and sexual relationships in Indonesia. We argue that new forms of expression and relations are facilitated by the particular features of mobile technology. We discuss two cases from contemporary Indonesia: a mobile dating service (BEDD) and mobile phone pornography. For each case study, we first discuss the socio-political background in Indonesia, then describe the technological affordances of the mobile phone which facilitate dating and pornography, and finally give examples of how the mobile phone is effecting change in dating and pornographic practices. This study is placed at a time when social relations, intimacy, and sexuality in Indonesia have become central public issues. Since the end of the New Order whilst many people have embraced the new freedoms of reformasi and democratization, there is also a high degree of social anxiety, tension and uncertainty (Juliastuti 139-40). These social changes and desires have played out in the formations of new and exciting modes of creativity, solidarity, and sociality (Heryanto and Hadiz 262) and equally violence, terror and criminality (Heryanto and Hadiz 256). The diverse and plural nature of Indonesian society is alive with a myriad of people and activities, and it is into this diverse social body that the mobile phone has become a central and prominent feature of interaction. The focus of our study is dating and pornography as mediated by the mobile phone; however, we do not suggest that these are new experiences in Indonesia. Rather over the last decade social, intimate, and sexual relationships have all been undergoing change and their motivations can be traced to a variety of sources including the factors of globalization, democratization and modernization. Throughout Asia “new media have become a crucial site for constituting new Asian sexual identities and communities” (Berry, Martin, and Yue 13) as people are connecting through new communication technologies. In this article we suggest that mobile phone technology opens new possibilities and introduces new channels, dynamics, and intensities of social interaction. Mobile phones are particularly powerful communication tools because of their mobility, accessibility, and convergence (Ling 16-19; Ito 14-15; Katz and Aakhus 303). These characteristics of mobile phones do not in and of themselves bring about any particular changes in dating and pornography, but they may facilitate changes already underway (Barendegt 7-9; Barker 9). Mobile Dating Background The majority of Indonesians in the 1960s and 1970s had arranged marriages (Smith-Hefner 443). Education reform during the 70s and 80s encouraged more women to attain an education which in turn led to the delaying of marriage and the changing of courtship practices (Smith-Hefner 450). “Compared to previous generations, [younger Indonesians] are freer to mix with the opposite sex and to choose their own marriage,” (Utomo 225). Modern courtship in Java is characterized by “self-initiated romance” and dating (Smith-Hefner 451). Mobile technology is beginning to play a role in initiating romance between young Indonesians. Technology One mobile matching or dating service available in Indonesia is called BEDD (www.bedd.com). BEDD is a free software for mobile phones in which users fill out a profile about themselves and can meet BEDD members who are within 20-30 feet using a Bluetooth connection on their mobile devices. BEDD members’ phones automatically exchange profile information so that users can easily meet new people who match their profile requests. BEDD calls itself mobile social networking community; “BEDD is a new Bluetooth enabled mobile social medium that allows people to meet, interact and communicate in a new way by letting their mobile phones do all the work as they go throughout their day.” As part of a larger project on mobile social networking (Humphreys 6), a field study was conducted of BEDD users in Jakarta, Indonesia and Singapore (where BEDD is based) in early 2006. In-depth interviews and open-ended user surveys were conducted with users, BEDD’s CEO and strategic partners in order to understand the social uses and effects BEDD. The majority of BEDD members (which topped 100,000 in January 2006) are in Indonesia thanks to a partnership with Nokia where BEDD came pre-installed on several phone models. In management interviews, both BEDD and Nokia explained that they partnered because both companies want to help “build community”. They felt that Bluetooth technology such as BEDD could be used to help youth meet new people and keep in touch with old friends. Examples One of BEDD’s functions is to help lower barriers to social interaction in public spaces. By sharing profile information and allowing for free text messaging, BEDD can facilitate conversations between BEDD members. According to users, mediating the initial conversation also helps to alleviate social anxiety, which often accompanies meeting new people. While social mingling and hanging out between Jakarta teenagers is a relatively common practice, one user said that BEDD provides a new and fun way to meet and flirt. In a society that must balance between an “idealized morality” and an increasingly sexualized popular culture (Utomo 226), BEDD provides a modern mode of self-initiated matchmaking. While BEDD was originally intended to aid in the matchmaking process of dating, it has been appropriated into everyday life in Indonesia because of its interpretive flexibility (Pinch & Bjiker 27). Though BEDD is certainly used to meet “beautiful girls” (according to one Indonesian male user), it is also commonly used to text message old friends. One member said he uses BEDD to text his friends in class when the lecture gets boring. BEDD appears to be a helpful modern communication tool when people are physically proximate but cannot easily talk to one another. BEDD can become a covert way to exchange messages with people nearby for free. Another potential explanation for BEDD’s increasing popularity is its ability to allow users to have private conversations in public space. Bennett notes that courtship in private spaces is seen as dangerous because it may lead to sexual impropriety (154). Dating and courtship in public spaces are seen as safer, particularly for conserving the reputation young Indonesian women. Therefore Bluetooth connections via mobile technologies can be a tool to make private social connections between young men and women “safer”. Bluetooth communication via mobile phones has also become prevalent in more conservative Muslim societies (Sullivan, par. 7; Braude, par. 3). There are, however, safety concerns about meeting strangers in public spaces. When asked, “What advice would you give a first time BEDD user?” one respondent answered, “harus bisa mnilai seseorang krn itu sangat penting, kita mnilai seseorang bukan cuma dari luarnya” (translated: be careful in evaluating (new) people, and don’t ever judge the book by its cover”). Nevertheless, only one person participating in this study mentioned this concern. To some degree meeting someone in a public may be safer than meeting someone in an online environment. Not only are there other people around in public spaces to physically observe, but co-location means there may be some accountability for how BEDD members present themselves. The development and adoption of matchmaking services such as BEDD suggests that the role of the mobile phone in Indonesia is not just to communicate with friends and family but to act as a modern social networking tool as well. For young Indonesians BEDD can facilitate the transfer of social information so as to encourage the development of new social ties. That said, there is still debate about exactly whom BEDD is connecting and for what purposes. On one hand, BEDD could help build community in Indonesia. One the other hand, because of its privacy it could become a tool for more promiscuous activities (Bennett 154-5). There are user profiles to suggest that people are using BEDD for both purposes. For example, note what four young women in Jakarta wrote in the BEDD profiles: Personal Description Looking For I am a good prayer, recite the holy book, love saving (money), love cycling… and a bit narcist. Meaning of life Ordinary gurl, good student, single, Owen lover, and the rest is up to you to judge. Phrenz ?! Peace?! Wondeful life! I am talkative, have no patience but so sweet. I am so girly, narcist, shy and love cute guys. Check my fs (Friendster) account if you’re so curious. Well, I am just an ordinary girl tho. Anybody who wants to know me. A boy friend would be welcomed. Play Station addict—can’t live without it! I am a rebel, love rock, love hiphop, naughty, if you want proof dial 081********* phrenz n cute guyz As these profiles suggest, the technology can be used to send different kinds of messages. The mobile phone and the BEDD software merely facilitate the process of social exchange, but what Indonesians use it for is up to them. Thus BEDD and the mobile phone become tools through which Indonesians can explore their identities. BEDD can be used in a variety of social and communicative contexts to allow users to explore their modern, social freedoms. Mobile Pornography Background Mobile phone pornography builds on a long tradition of pornography and sexually explicit material in Indonesia through the use of a new technology for an old art and product. Indonesia has a rich sexual history with a documented and prevalent sex industry (Suryakusuma 115). Lesmana suggests that the country has a tenuous pornographic industry prone to censorship and nationalist politics intent on its destruction. Since the end of the New Order and opening of press freedoms there has been a proliferation in published material including a mushrooming of tabloids, men’s magazines such as FHM, Maxim and Playboy, which are often regarded as pornographic. This is attributed to the decline of the power of the bureaucracy and government and the new role of capital in the formation of culture (Chua 16). There is a parallel pornography industry, however, that is more amateur, local, and homemade (Barker 6). It is into this range of material that mobile phone pornography falls. Amongst the myriad forms of pornography and sexually explicit material available in Indonesia, the mobile phone in recent years has emerged as a new platform for production, distribution, and consumption. This section will not deal with the ethics of representation nor engage with the debate about definitions and the rights and wrongs of pornography. Instead what will be shown is how the mobile phone can be and has been used as an instrument/medium for the production and consumption of pornography within contemporary social relationships. Technology There are several technological features of the mobile phone that make pornography possible. As has already been noted the mobile phone has had a large adoption rate in Indonesia, and increasingly these phones come equipped with cameras and the ability to send data via MMS and Bluetooth. Coupled with the mobility of the phone, the convergence of technology in the mobile phone makes it possible for pornography to be produced and consumed in a different way than what has been possible before. It is only recently that the mobile phone has been marketed as a video camera with the release of the Nokia N90; however, quality and recording time are severely limited. Still, the mobile phone is a convenient and at-hand tool for the production and consumption of individually made, local, and non-professional pieces of porn, sex and sexuality. It is impossible to know how many such films are in circulation. A number of websites that offer these films for downloads host between 50 and 100 clips in .3gp file format, with probably more in actual circulation. At the very least, this is a tenfold increase in number compared to the recent emergence of non-professional VCD films (Barker 3). This must in part be attributed to the advantages that the mobile phone has over standard video cameras including cost, mobility, convergence, and the absence of intervening data processing and disc production. Examples There are various examples of mobile pornography in Indonesia. These range from the pornographic text message sent between lovers to the mobile phone video of explicit sexual acts (Barendregt 14-5). The mobile phone affords privacy for the production and exchange of pornographic messages and media. Because mobile devices are individually owned, however, pornographic material found on mobile phones can be directly tied to the individual owners. For example, police in Kotabaru inspected the phones of high school students in search of pornographic materials and arrested those individuals on whose phones it was found (Barendregt 18). Mobile phone pornography became a national political issue in 2006 when an explicit one-minute clip of a singer and an Indonesian politician became public. Videoed in 2004, the clip shows Maria Eva, a 27 year-old dangdut singer (see Browne, 25-6) and Yahya Zaini, a married 42 year-old who was head of religious affairs for the Golkar political party. Their three-year affair ended in 2005, but the film did not become public until 2006. It spread like wildfire between phones and across the internet, however, and put an otherwise secret relationship into the limelight. These types of affairs and relationships were common knowledge to people through gossip, exposes such as Jakarta Undercover (Emka 93-108) and stories in tabloids; yet this culture of adultery and prostitution continued and remained anonymous because of bureaucratic control of evidence and information (Suryakusuma 115). In this case, however, the filming of Maria Eva once public proves the identities of those involved and their infidelity. As a result of the scandal it was further revealed that Maria Eva had been forced by Yayha Zaini and his wife to have an abortion, deepening the moral crisis. Yahya Zaini later resigned as his party’s head of Religious Affairs (Asmarani, sec. 1-2), due to what was called the country’s “first real sex scandal” (Naughton, par. 2). As these examples show, there are definite risks and consequences involved in the production of mobile pornography. Even messages/media that are meant to be shared between two consenting individuals can eventually make their way into the public mobile realm and have serious consequences for those involved. Mobile video and photography does, however, represent a potential new check on the Indonesian bureaucratic elite which has not been previously available by other means such as a watchdog media. “The role of the press as a control mechanism is practically nonexistent [in Jakarta], which in effect protects corruption, nepotism, financial manipulation, social injustice, and repression, as well as the murky sexual life of the bureaucratic power elite,” (Suryakusuma 117). Thus while originally a mobile video may have been created for personal pleasure, through its mass dissemination via new media it can become a means of sousveillance (Mann, Nolan and Wellman 332-3) whereby the control of surveillance is flipped to reveal the often hidden abuses of power by officials. Whilst the debates over pornography in Indonesia tend to focus on the moral aspects of it, the broader social impacts of technology on relationships are often ignored. Issues related to power relations or even media as cultural expression are often disregarded as moral judgments cast a heavy shadow over discussions of locally produced Indonesian mobile pornography. It is possible to move beyond the moral critique of pornographic media to explore the social significance of its proliferation as a cultural product. Conclusion In these two case studies we have tried to show how the mobile phone in Indonesia has become a mode of interaction but also a platform through which to explore other current issues and debates related to dating, sexuality and media. Since 1998 and the fall of the New Order, Indonesia has been struggling with blending old and new, a desire of change and nostalgia for past, and popular desire for a “New Indonesia” (Heryanto, sec. Post-1998). Cultural products within Indonesia have played an important role in exploring these issues. The mobile phone in Indonesia is not just a technology, but also a product in and through which these desires are played out. Changes in dating and pornography practices have been occurring in Indonesia for some time. As people use mobile technology to produce, communicate, and consume, the device becomes intricately related to identity struggle and cultural production within Indonesia. It is important to keep in mind, however, that while mobile technology adoption within Indonesia is growing, it is still limited to a particular subset of the population. As has been previously observed (Barendregt 3), it is wealthier, young people in urban areas who are most intensely involved in mobile technology. As handset prices decrease and availability in rural areas increases, however, no longer will mobile technology be so demographically confined in Indonesia. The convergent technology of the mobile phone opens many possibilities for creative adoption and usage. As a communication device it allows for the creation, sharing, and viewing of messages. Therefore, the technology itself facilitates social connections and networking. As demonstrated in the cases of dating and pornography, the mobile phone is both a tool for meeting new people and disseminating sexual messages/media because it is a networked technology. The mobile phone is not fundamentally changing dating and pornography practices, but it is accelerating social and cultural trends already underway in Indonesia by facilitating the exchange and dissemination of messages and media. As these case studies show, what kinds of messages Indonesians choose to create and share are up to them. The same device can be used for relatively innocuous behavior as well as more controversial behavior. With increased adoption in Indonesia, the mobile will continue to be a lens through which to further explore modern socio-political issues. 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Sullivan, Kevin. “Saudi Youth Use Cellphone Savvy to Outwit the Sentries of Romance.” The Washington Post 6 Aug. 2006: A01. Suryakusuma, Julia. “The State and Sexuality in New Order Indonesia.” Fantasizing the Feminine in Indonesia. Ed. Laurie J. Sears. Durham, NC: Duke UP, 1996. 92-119. Utomo, Iwu Dwisetyani. “Sexual Values and Early Experiences among Young People in Jakarta: Youth, Courtship and Sexuality.” Coming of Age in South and Southeast Asia. Eds. Lenore Manderson and Pranee Liamputtong. Surey: Curzon, 2002. 207-27. Winner, Langdon. “Do Artifacts Have Politics?” Social Shaping of Technology. 2nd ed. Eds. Donald MacKenzie and Judy Wajcman. Buckingham, UK: Open UP, 2002. 28-40. World Bank. 2004 Indonesia Data & Statistics. 4 Jan. 2006. http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/ EASTASIAPACIFICEXT/INDONESIAEXTN/0,,menuPK:287097~pagePK: 141132~piPK:141109~theSitePK:226309,00.html>. Citation reference for this article MLA Style Humphreys, Lee, and Thomas Barker. "Modernity and the Mobile Phone: Exploring Tensions about Dating and Sex in Indonesia." M/C Journal 10.1 (2007). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0703/06-humphreys-barker.php>. APA Style Humphreys, L., and T. Barker. (Mar. 2007) "Modernity and the Mobile Phone: Exploring Tensions about Dating and Sex in Indonesia," M/C Journal, 10(1). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0703/06-humphreys-barker.php>.

Introduction Eating is one of the most quintessential activities of human life. Because of this primacy, eating is, as food anthropologist Sidney Mintz has observed, “not merely a biological activity, but a vibrantly cultural activity as well” (48). This article posits that the current awareness of climate change in the Western world is animating such cultural activity as the Slow Food movement and is, as a result, stimulating what could be seen as an evolutionary change in popular foodways. Moreover, this paper suggests that, in line with modelling provided by the Slow Food example, an increased awareness of the connections of climate change to the social injustices of food production might better drive social change in such areas. This discussion begins by proposing that contemporary foodways—defined as “not only what is eaten by a particular group of people but also the variety of customs, beliefs and practices surrounding the production, preparation and presentation of food” (Davey 182)—are changing in the West in relation to current concerns about climate change. Such modification has a long history. Since long before the inception of modern Homo sapiens, natural climate change has been a crucial element driving hominidae evolution, both biologically and culturally in terms of social organisation and behaviours. Macroevolutionary theory suggests evolution can dramatically accelerate in response to rapid shifts in an organism’s environment, followed by slow to long periods of stasis once a new level of sustainability has been achieved (Gould and Eldredge). There is evidence that ancient climate change has also dramatically affected the rate and course of cultural evolution. Recent work suggests that the end of the last ice age drove the cultural innovation of animal and plant domestication in the Middle East (Zeder), not only due to warmer temperatures and increased rainfall, but also to a higher level of atmospheric carbon dioxide which made agriculture increasingly viable (McCorriston and Hole, cited in Zeder). Megadroughts during the Paleolithic might well have been stimulating factors behind the migration of hominid populations out of Africa and across Asia (Scholz et al). Thus, it is hardly surprising that modern anthropogenically induced global warming—in all its’ climate altering manifestations—may be driving a new wave of cultural change and even evolution in the West as we seek a sustainable homeostatic equilibrium with the environment of the future. In 1962, Rachel Carson’s Silent Spring exposed some of the threats that modern industrial agriculture poses to environmental sustainability. This prompted a public debate from which the modern environmental movement arose and, with it, an expanding awareness and attendant anxiety about the safety and nutritional quality of contemporary foods, especially those that are grown with chemical pesticides and fertilizers and/or are highly processed. This environmental consciousness led to some modification in eating habits, manifest by some embracing wholefood and vegetarian dietary regimes (or elements of them). Most recently, a widespread awareness of climate change has forced rapid change in contemporary Western foodways, while in other climate related areas of socio-political and economic significance such as energy production and usage, there is little evidence of real acceleration of change. Ongoing research into the effects of this expanding environmental consciousness continues in various disciplinary contexts such as geography (Eshel and Martin) and health (McMichael et al). In food studies, Vileisis has proposed that the 1970s environmental movement’s challenge to the polluting practices of industrial agri-food production, concurrent with the women’s movement (asserting women’s right to know about everything, including food production), has led to both cooks and eaters becoming increasingly knowledgeable about the links between agricultural production and consumer and environmental health, as well as the various social justice issues involved. As a direct result of such awareness, alternatives to the industrialised, global food system are now emerging (Kloppenberg et al.). The Slow Food (R)evolution The tenets of the Slow Food movement, now some two decades old, are today synergetic with the growing consternation about climate change. In 1983, Carlo Petrini formed the Italian non-profit food and wine association Arcigola and, in 1986, founded Slow Food as a response to the opening of a McDonalds in Rome. From these humble beginnings, which were then unashamedly positing a return to the food systems of the past, Slow Food has grown into a global organisation that has much more future focused objectives animating its challenges to the socio-cultural and environmental costs of industrial food. Slow Food does have some elements that could be classed as reactionary and, therefore, the opposite of evolutionary. In response to the increasing homogenisation of culinary habits around the world, for instance, Slow Food’s Foundation for Biodiversity has established the Ark of Taste, which expands upon the idea of a seed bank to preserve not only varieties of food but also local and artisanal culinary traditions. In this, the Ark aims to save foods and food products “threatened by industrial standardization, hygiene laws, the regulations of large-scale distribution and environmental damage” (SFFB). Slow Food International’s overarching goals and activities, however, extend far beyond the preservation of past foodways, extending to the sponsoring of events and activities that are attempting to create new cuisine narratives for contemporary consumers who have an appetite for such innovation. Such events as the Salone del Gusto (Salon of Taste) and Terra Madre (Mother Earth) held in Turin every two years, for example, while celebrating culinary traditions, also focus on contemporary artisanal foods and sustainable food production processes that incorporate the most current of agricultural knowledge and new technologies into this production. Attendees at these events are also driven by both an interest in tradition, and their own very current concerns with health, personal satisfaction and environmental sustainability, to change their consumer behavior through an expanded self-awareness of the consequences of their individual lifestyle choices. Such events have, in turn, inspired such events in other locations, moving Slow Food from local to global relevance, and affecting the intellectual evolution of foodway cultures far beyond its headquarters in Bra in Northern Italy. This includes in the developing world, where millions of farmers continue to follow many traditional agricultural practices by necessity. Slow Food Movement’s forward-looking values are codified in the International Commission on the Future of Food and Agriculture 2006 publication, Manifesto on the Future of Food. This calls for changes to the World Trade Organisation’s rules that promote the globalisation of agri-food production as a direct response to the “climate change [which] threatens to undermine the entire natural basis of ecologically benign agriculture and food preparation, bringing the likelihood of catastrophic outcomes in the near future” (ICFFA 8). It does not call, however, for a complete return to past methods. To further such foodway awareness and evolution, Petrini founded the University of Gastronomic Sciences at Slow Food’s headquarters in 2004. The university offers programs that are analogous with the Slow Food’s overall aim of forging sustainable partnerships between the best of old and new practice: to, in the organisation’s own words, “maintain an organic relationship between gastronomy and agricultural science” (UNISG). In 2004, Slow Food had over sixty thousand members in forty-five countries (Paxson 15), with major events now held each year in many of these countries and membership continuing to grow apace. One of the frequently cited successes of the Slow Food movement is in relation to the tomato. Until recently, supermarkets stocked only a few mass-produced hybrids. These cultivars were bred for their disease resistance, ease of handling, tolerance to artificial ripening techniques, and display consistency, rather than any culinary values such as taste, aroma, texture or variety. In contrast, the vine ripened, ‘farmer’s market’ tomato has become the symbol of an “eco-gastronomically” sustainable, local and humanistic system of food production (Jordan) which melds the best of the past practice with the most up-to-date knowledge regarding such farming matters as water conservation. Although the term ‘heirloom’ is widely used in relation to these tomatoes, there is a distinctively contemporary edge to the way they are produced and consumed (Jordan), and they are, along with other organic and local produce, increasingly available in even the largest supermarket chains. Instead of a wholesale embrace of the past, it is the connection to, and the maintenance of that connection with, the processes of production and, hence, to the environment as a whole, which is the animating premise of the Slow Food movement. ‘Slow’ thus creates a gestalt in which individuals integrate their lifestyles with all levels of the food production cycle and, hence to the environment and, importantly, the inherently related social justice issues. ‘Slow’ approaches emphasise how the accelerated pace of contemporary life has weakened these connections, while offering a path to the restoration of a sense of connectivity to the full cycle of life and its relation to place, nature and climate. In this, the Slow path demands that every consumer takes responsibility for all components of his/her existence—a responsibility that includes becoming cognisant of the full story behind each of the products that are consumed in that life. The Slow movement is not, however, a regime of abstention or self-denial. Instead, the changes in lifestyle necessary to support responsible sustainability, and the sensual and aesthetic pleasure inherent in such a lifestyle, exist in a mutually reinforcing relationship (Pietrykowski 2004). This positive feedback loop enhances the potential for promoting real and long-term evolution in social and cultural behaviour. Indeed, the Slow zeitgeist now informs many areas of contemporary culture, with Slow Travel, Homes, Design, Management, Leadership and Education, and even Slow Email, Exercise, Shopping and Sex attracting adherents. Mainstreaming Concern with Ethical Food Production The role of the media in “forming our consciousness—what we think, how we think, and what we think about” (Cunningham and Turner 12)—is self-evident. It is, therefore, revealing in relation to the above outlined changes that even the most functional cookbooks and cookery magazines (those dedicated to practical information such as recipes and instructional technique) in Western countries such as the USA, UK and Australian are increasingly reflecting and promoting an awareness of ethical food production as part of this cultural change in food habits. While such texts have largely been considered as useful but socio-politically relatively banal publications, they are beginning to be recognised as a valid source of historical and cultural information (Nussel). Cookbooks and cookery magazines commonly include discussion of a surprising range of issues around food production and consumption including sustainable and ethical agricultural methods, biodiversity, genetic modification and food miles. In this context, they indicate how rapidly the recent evolution of foodways has been absorbed into mainstream practice. Much of such food related media content is, at the same time, closely identified with celebrity mass marketing and embodied in the television chef with his or her range of branded products including their syndicated articles and cookbooks. This commercial symbiosis makes each such cuisine-related article in a food or women’s magazine or cookbook, in essence, an advertorial for a celebrity chef and their named products. Yet, at the same time, a number of these mass media food celebrities are raising public discussion that is leading to consequent action around important issues linked to climate change, social justice and the environment. An example is Jamie Oliver’s efforts to influence public behaviour and government policy, a number of which have gained considerable traction. Oliver’s 2004 exposure of the poor quality of school lunches in Britain (see Jamie’s School Dinners), for instance, caused public outrage and pressured the British government to commit considerable extra funding to these programs. A recent study by Essex University has, moreover, found that the academic performance of 11-year-old pupils eating Oliver’s meals improved, while absenteeism fell by 15 per cent (Khan). Oliver’s exposé of the conditions of battery raised hens in 2007 and 2008 (see Fowl Dinners) resulted in increased sales of free-range poultry, decreased sales of factory-farmed chickens across the UK, and complaints that free-range chicken sales were limited by supply. Oliver encouraged viewers to lobby their local councils, and as a result, a number banned battery hen eggs from schools, care homes, town halls and workplace cafeterias (see, for example, LDP). The popular penetration of these ideas needs to be understood in a historical context where industrialised poultry farming has been an issue in Britain since at least 1848 when it was one of the contributing factors to the establishment of the RSPCA (Freeman). A century after Upton Sinclair’s The Jungle (published in 1906) exposed the realities of the slaughterhouse, and several decades since Peter Singer’s landmark Animal Liberation (1975) and Tom Regan’s The Case for Animal Rights (1983) posited the immorality of the mistreatment of animals in food production, it could be suggested that Al Gore’s film An Inconvenient Truth (released in 2006) added considerably to the recent concern regarding the ethics of industrial agriculture. Consciousness-raising bestselling books such as Jim Mason and Peter Singer’s The Ethics of What We Eat and Michael Pollan’s The Omnivore’s Dilemma (both published in 2006), do indeed ‘close the loop’ in this way in their discussions, by concluding that intensive food production methods used since the 1950s are not only inhumane and damage public health, but are also damaging an environment under pressure from climate change. In comparison, the use of forced labour and human trafficking in food production has attracted far less mainstream media, celebrity or public attention. It could be posited that this is, in part, because no direct relationship to the environment and climate change and, therefore, direct link to our own existence in the West, has been popularised. Kevin Bales, who has been described as a modern abolitionist, estimates that there are currently more than 27 million people living in conditions of slavery and exploitation against their wills—twice as many as during the 350-year long trans-Atlantic slave trade. Bales also chillingly reveals that, worldwide, the number of slaves is increasing, with contemporary individuals so inexpensive to purchase in relation to the value of their production that they are disposable once the slaveholder has used them. Alongside sex slavery, many other prevalent examples of contemporary slavery are concerned with food production (Weissbrodt et al; Miers). Bales and Soodalter, for example, describe how across Asia and Africa, adults and children are enslaved to catch and process fish and shellfish for both human consumption and cat food. Other campaigners have similarly exposed how the cocoa in chocolate is largely produced by child slave labour on the Ivory Coast (Chalke; Off), and how considerable amounts of exported sugar, cereals and other crops are slave-produced in certain countries. In 2003, some 32 per cent of US shoppers identified themselves as LOHAS “lifestyles of health and sustainability” consumers, who were, they said, willing to spend more for products that reflected not only ecological, but also social justice responsibility (McLaughlin). Research also confirms that “the pursuit of social objectives … can in fact furnish an organization with the competitive resources to develop effective marketing strategies”, with Doherty and Meehan showing how “social and ethical credibility” are now viable bases of differentiation and competitive positioning in mainstream consumer markets (311, 303). In line with this recognition, Fair Trade Certified goods are now available in British, European, US and, to a lesser extent, Australian supermarkets, and a number of global chains including Dunkin’ Donuts, McDonalds, Starbucks and Virgin airlines utilise Fair Trade coffee and teas in all, or parts of, their operations. Fair Trade Certification indicates that farmers receive a higher than commodity price for their products, workers have the right to organise, men and women receive equal wages, and no child labour is utilised in the production process (McLaughlin). Yet, despite some Western consumers reporting such issues having an impact upon their purchasing decisions, social justice has not become a significant issue of concern for most. The popular cookery publications discussed above devote little space to Fair Trade product marketing, much of which is confined to supermarket-produced adverzines promoting the Fair Trade products they stock, and international celebrity chefs have yet to focus attention on this issue. In Australia, discussion of contemporary slavery in the press is sparse, having surfaced in 2000-2001, prompted by UNICEF campaigns against child labour, and in 2007 and 2008 with the visit of a series of high profile anti-slavery campaigners (including Bales) to the region. The public awareness of food produced by forced labour and the troubling issue of human enslavement in general is still far below the level that climate change and ecological issues have achieved thus far in driving foodway evolution. This may change, however, if a ‘Slow’-inflected connection can be made between Western lifestyles and the plight of peoples hidden from our daily existence, but contributing daily to them. Concluding Remarks At this time of accelerating techno-cultural evolution, due in part to the pressures of climate change, it is the creative potential that human conscious awareness brings to bear on these challenges that is most valuable. Today, as in the caves at Lascaux, humanity is evolving new images and narratives to provide rational solutions to emergent challenges. As an example of this, new foodways and ways of thinking about them are beginning to evolve in response to the perceived problems of climate change. The current conscious transformation of food habits by some in the West might be, therefore, in James Lovelock’s terms, a moment of “revolutionary punctuation” (178), whereby rapid cultural adaption is being induced by the growing public awareness of impending crisis. It remains to be seen whether other urgent human problems can be similarly and creatively embraced, and whether this trend can spread to offer global solutions to them. References An Inconvenient Truth. 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Khan, Urmee. “Jamie Oliver’s School Dinners Improve Exam Results, Report Finds.” Telegraph 1 Feb. 2009. 24 Aug. 2009 < http://www.telegraph.co.uk/education/educationnews/4423132/Jamie-Olivers-school-dinners-improve-exam-results-report-finds.html >. Kloppenberg, Jack, Jr, Sharon Lezberg, Kathryn de Master, G. W. Stevenson, and John Henrickson. ‘Tasting Food, Tasting Sustainability: Defining the Attributes of an Alternative Food System with Competent, Ordinary People.” Human Organisation 59.2 (Jul. 2000): 177–86. (LDP) Liverpool Daily Post. “Battery Farm Eggs Banned from Schools and Care Homes.” Liverpool Daily Post 12 Jan. 2008. 24 Aug. 2009 < http://www.liverpooldailypost.co.uk/liverpool-news/regional-news/2008/01/12/battery-farm-eggs-banned-from-schools-and-care-homes-64375-20342259 >. Lovelock, James. The Ages of Gaia: A Biography of Our Living Earth. New York: Bantam, 1990 (first published 1988). Mason, Jim, and Peter Singer. The Ethics of What We Eat. Melbourne: Text Publishing, 2006. McLaughlin, Katy. “Is Your Grocery List Politically Correct? Food World’s New Buzzword Is ‘Sustainable’ Products.” The Wall Street Journal 17 Feb. 2004. 29 Aug. 2009 < http://www.globalexchange.org/campaigns/fairtrade/coffee/1732.html >. McMichael, Anthony J, John W Powles, Colin D Butler, and Ricardo Uauy. “Food, Livestock Production, Energy, Climate Change, and Health.” The Lancet 370 (6 Oct. 2007): 1253–63. Miers, Suzanne. “Contemporary Slavery”. A Historical Guide to World Slavery. Ed. Seymour Drescher, and Stanley L. Engerman. New York: Oxford University Press, 1998. Mintz, Sidney W. Tasting Food, Tasting Freedom: Excursions into Eating, Culture, and the Past. Boston: Beacon Press, 1994. Nussel, Jill. “Heating Up the Sources: Using Community Cookbooks in Historical Inquiry.” History Compass 4/5 (2006): 956–61. Off, Carol. Bitter Chocolate: Investigating the Dark Side of the World's Most Seductive Sweet. St Lucia: U of Queensland P, 2008. Paxson, Heather. “Slow Food in a Fat Society: Satisfying Ethical Appetites.” Gastronomica: The Journal of Food and Culture 5.1 (2005): 14–18. Pietrykowski, Bruce. “You Are What You Eat: The Social Economy of the Slow Food Movement.” Review of Social Economy 62:3 (2004): 307–21. Pollan, Michael. The Omnivore’s Dilemma: A Natural History of Four Meals. New York: The Penguin Press, 2006. Regan, Tom. The Case for Animal Rights. Berkeley: University of California Press, 1983. Scholz, Christopher A., Thomas C. Johnson, Andrew S. Cohen, John W. King, John A. Peck, Jonathan T. Overpeck, Michael R. Talbot, Erik T. Brown, Leonard Kalindekafe, Philip Y. O. Amoako, Robert P. Lyons, Timothy M. Shanahan, Isla S. Castañeda, Clifford W. Heil, Steven L. Forman, Lanny R. McHargue, Kristina R. Beuning, Jeanette Gomez, and James Pierson. “East African Megadroughts between 135 and 75 Thousand Years Ago and Bearing on Early-modern Human Origins.” PNAS: Proceedings of the National Academy of the Sciences of the United States of America 104.42 (16 Oct. 2007): 16416–21. Sinclair, Upton. The Jungle. New York: Doubleday, Jabber & Company, 1906. Singer, Peter. Animal Liberation. New York: HarperCollins, 1975. (SFFB) Slow Food Foundation for Biodiversity. “Ark of Taste.” 2009. 24 Aug. 2009 < http://www.fondazioneslowfood.it/eng/arca/lista.lasso >. (UNISG) University of Gastronomic Sciences. “Who We Are.” 2009. 24 Aug. 2009 < http://www.unisg.it/eng/chisiamo.php >. Vileisis, Ann. Kitchen Literacy: How We Lost Knowledge of Where Food Comes From and Why We Need to Get It Back. Washington: Island Press/Shearwater Books, 2008. Weissbrodt, David, and Anti-Slavery International. Abolishing Slavery and its Contemporary Forms. New York and Geneva: Office of the United Nations High Commissioner for Human Rights, United Nations, 2002. Zeder, Melinda A. “The Neolithic Macro-(R)evolution: Macroevolutionary Theory and the Study of Culture Change.” Journal of Archaeological Research 17 (2009): 1–63.

Photo ID 129550055 © Katarzyna Bialasiewicz | Dreamstime.com ABSTRACT It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon, and today, about 20 percent of people in the US live in jurisdictions that permit MAiD. The New York State legislature is currently considering a bill that would permit Medical Aid in Dying for terminally ill patients in certain defined circumstances. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions. This demonstrates that legislation can simultaneously grant terminally ill citizens the civil right to access MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. Given the copious evidence gathered in the past decades, concerns about abuse can no longer be credited as grounds for opposing the passage of legislation that is demonstrably both effective and safe. INTRODUCTION It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon,[1] and today, about 20 percent of people in the US live in jurisdictions that permit MAiD.[2] Other jurisdictions, including New York, are actively considering adopting MAiD laws. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions, demonstrating that legislation can permit MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. The data should allay the concerns of those who oppose MAiD due to the risk of abuse, coercion, and a hypothetical slippery slope. We, as a society, as clinicians, and as ethicists, must remain vigilant and prevent abuse of MAiD, given the potential risks in the community and in congregate care settings and the risk of patient exploitation by family members. However, given the copious evidence, concerns about abuse do not justify opposition to legislation that is effective and safe. I. New York’s MAiD Bill The New York State legislature is currently considering a bill that would permit MAiD for terminally ill patients in defined circumstances.[3] The bill applies only to adults with a terminal illness or condition that is “incurable and irreversible” and “will, within reasonable medical judgment, produce death within six months.” The bill contains numerous protective requirements: MAiD requests can only be made by the patient themself; requests cannot be made by healthcare agents, surrogates, or anyone else; MAiD requests must be made both orally and in writing to the patient’s attending physician; No person is eligible for MAiD solely because of age or disability; The patient’s attending physician must determine the patient has a qualifying terminal illness, has decision-making capacity, and has made a voluntary, informed decision to request MAiD, in the absence of coercion; These determinations must be confirmed by a second consulting physician in writing; If the attending physician has any concern that the patient may not have decision-making capacity, the patient must be referred to a mental health professional; The attending physician has additional duties to the patient, including ensuring the decision is informed, by discussing the patient’s condition and prognosis; discussing the MAiD process, and treatment alternatives like palliative and hospice care; offering referrals to other appropriate treatment, like palliative and hospice care; and educating the patient that their request can be rescinded at any time and offering them an opportunity to do so; The written request must be witnessed by at least two adults who cannot be (i) related to the patient, (ii) entitled to any portion of the patient’s estate, (iii) employed by a healthcare facility where the patient is receiving treatment or residing, (iv) or the attending physician, consulting physician, or mental health professional determining decision-making capacity; and MAiD medication must be self-administered by the patient, and it must be voluntarily ingested.[4] ARGUMENTS FOR AND AGAINST MAiD II. No Evidence of Abuse of Existing MAiD Laws MAiD supporters and critics alike have a concern about the abuse of MAiD. For this reason, MAiD laws throughout the US incorporate strict eligibility criteria and protective procedural requirements. For instance, patients are eligible only if they are terminally ill with six months or less to live, more than one physician must be involved, and requests must be witnessed (by individuals unrelated to the patient who will not profit from the patient’s estate). MAiD requests have been closely examined in the 27 years since Oregon became the first state to legalize the practice. The results show that these compassionate and protective measures have worked. There have been no documented or substantiated incidents of MAiD abuse since Oregon became the first to implement a MAiD law in 1997.[5] In 2019, the executive director of Disability Rights Oregon (DRO), an organization mandated by federal law to investigate complaints of abuse or neglect of people with disabilities, reported that DRO has never received a complaint that a person with disabilities was coerced into obtaining a prescription for MAiD drugs.[6] A recent study of aggregated data from all nine of the US jurisdictions with publicly available MAiD records from 1998 to 2002 found that 95.6 percent of those who died by MAiD were non-Hispanic white individuals, and 53.1 percent were male.[7] 72.2 percent of these individuals had at least some college education, 74 percent had a cancer diagnosis, and the median age of MAiD death was 74 years old. Only 11 percent of patients were uninsured. MAiD users tend to be white, older, educated, diagnosed with cancer, and insured. Fears that MAiD would overwhelmingly be used by (or on) the poor, the uninsured, the uneducated, or racial and ethnic minorities have not materialized. This data has actually raised a converse concern: that MAiD may, inequitably, not be readily available to less privileged populations or those with a diagnosis other than cancer.[8] Opponents of MAiD may argue that the recent relaxation of certain legal restrictions in some jurisdictions is evidence that the slippery slope to unrestricted euthanasia has begun. This is a mischaracterization. Certain restrictions have been adjusted. For instance, Oregon and Vermont removed the residency restriction that previously excluded non-residents from eligibility.[9] Both states changed the residency requirement due to lawsuits challenging the constitutionality of requiring residence.[10] New Jersey’s law will likely change soon, as well.[11] Initial MAiD laws were drafted to be highly restrictive out of concern about unintended and unforeseeable consequences. Given the gravity of the subject, decades ago, it was better to err on the side of caution, even if that meant excluding from eligibility people who ought to, ethically or legally, be included. Now, with nearly 30 years of experience and data, we can better determine which requirements are necessary to appropriately protect patients, clinicians, and society. Restrictions proven to be unnecessary can now be modified. The core purposes of MAiD laws and the rights and protections they provide are not changing. Rather, a few aspects of the regulations are being adjusted so they are not more restrictive than necessary to achieve their purpose. The ever-growing body of evidence that MAiD laws can adequately protect against abuse and the mythic slippery slope has assured many that their fears will not materialize.[12] For example, NYU bioethicist Arthur Caplan was once a vigorous opponent of MAiD. He worried that MAiD laws would lead to the abuse of the poor, uninsured, and disabled in service of cost-saving or the convenience of others. [13] But, after closely following the empirical evidence from MAiD early-adopters, Oregon and Washington, Caplan changed his mind. In 2018, he argued in favor of the NY MAiD bill before the New York State Assembly Standing Committee on Health.[14] Discussing his review of evidence from these states, Caplan stated: I found no cause for my concerns, none with respect to the slippery slope. There isn’t solid evidence of coercion or duplicity being exercised with respect to people who choose assistance in dying in either state. The police, government officials, families of those who have chosen to use the legislation and the general citizenry find no causes or basis for changing the laws due to abuse or misapplication . . . These slippery slope arguments are just not true . . . there is no current factual support for this slippery slope argument that vulnerable individuals are at risk for being coerced into using the law.[15] Decades of evidence has shown that legislation can simultaneously grant terminally ill patients access to MAiD while also protecting against coercion and abuse. In the face of this evidence, continuing to deny access to MAiD because of hypothetical abuse is unjust and unethical. III. Views of Opponents are Neither Grounded in Fact nor Consistent with Current End-of-Life Practices a. Risk of coercion One common argument heard today from some disability advocates who oppose MAiD goes something like this: Everybody who would qualify for and use MAiD is (or will become) a disabled person, so MAiD only kills people with disabilities. The most common reasons people choose to end their lives via MAiD are disability issues, like loss of autonomy, less ability to engage in activities, and loss of dignity. They argue that, instead of making it easier for disabled people to die, we should make sure that proper services and support exist so that disabled people do not choose to die. Such disability-rights-based arguments tend to assert that to avoid abuse, we must prohibit MAiD altogether. They argue that legalizing MAiD will inexorably lead to abuse and coercion, and disabled people will be pressured into suicide. Some even argue that MAiD laws are the first step to euthanasia, noting the path in other jurisdictions.[16] As an initial matter, people with disabilities deserve adequate support and services, and these are not always available to them. People with disabilities have faced tremendous discrimination in the healthcare system and have been historically prevented from accessing proper care and asserting their autonomy. Ensuring that all can access adequate end-of-life care, like palliative or hospice care, is an ongoing battle that ought not be abandoned. But fighting for adequate end-of-life care and legalizing MAiD are not mutually exclusive. In Oregon, 90 percent of those who access MAiD are enrolled in hospice and states with MAiD laws tend to have better access to palliative care than states without.[17] MAiD proponents seek only to add another choice for the dying, not to diminish any other options. This is reflected in the text of New York’s pending bill, which explicitly requires patient education and referrals to appropriate end-of-life services, like palliative care and hospice.[18] No one has openly argued that society should hold terminally ill patients hostage in order to obtain broader support and funding for palliative care, but that is the practical effect. Beyond the need for supportive services and proper access to the full range of end-of-life care options, the disability argument fails. First, the assertion that MAiD laws will be abused and disabled people will be coerced into suicide is not grounded in fact. To the contrary, real-life evidence gathered in over two decades of legal MAiD has shown no documented or substantiated incidents of abuse, as discussed above.[19] The slippery slope has simply not materialized. Advocates for people with disabilities who are opposed to MAiD have not clearly articulated exactly who is vulnerable to being coerced into obtaining a MAiD prescription or even how such coercion could logistically occur. Most people with disabilities are not vulnerable to MAiD abuse, as they do not have a qualifying terminal illness or lack decisional capacity due to a developmental disability and are therefore not eligible. MAiD opponents appear to be claiming that all those who qualify for MAiD are vulnerable and seek protection from MAiD laws. But this would include many of the people that, over the past decades, have aggressively and publicly advocated for access to MAiD – terminally ill people, like Brittany Maynard,[20] many of whom lobbied hard for the passage of MAiD laws while knowing that they themselves would die before the laws passed. Opponents of MAiD from a segment of the disability rights community are telling individuals who they claim, without permission, as members of the MAiD opposition community, that they must all endure unimaginable suffering without a MAiD option because they must be protected from theoretical coercive harm. People with disabilities should be allowed to make their own choices. No one, not even the most well-meaning advocate, should be allowed to obstruct a patient’s end-of-life choices – those choices belong to the patient alone. b. Argument That the Demand for MAID is a Result of Poor Disability Services Second, the argument that terminally ill patients would decline MAiD if only they had better disability services or support is disingenuous to the extent that it ignores the fact that people choosing MAiD are actively dying. No provision of supportive services can change this. And it is perfectly reasonable for someone who knows that they will die in less than six months to want some control over the manner of their death and to avoid the deterioration, indignity, and suffering that could come with it. The argument construes a MAiD death as a choice to die rather than live with a disability. But individuals choosing MAiD are not choosing death – death is coming and coming quickly. MAiD simply offers some control over this reality, giving patients an option that is safe, certain, and painless. Certainly, supportive hospice services should be available for these individuals. But there is no evidence demonstrating that any amount of service would eliminate the need and desire for the MAiD option. c. Inconsistent Positions on MAID and Other Ending Life Care Options: Palliative Sedation and VSED MAiD opponents who are concerned about abuse and coercion often hold inconsistent views on other currently available ending life care options.[21] For example, some argue that palliative sedation[22] renders MAiD unnecessary and does not present the same ethical problems.[23] However, whereas MAiD can only be chosen by the patient themself (and the patient must have decision-making capacity), the same is not true for palliative sedation. Palliative sedation, a valuable modality of end-of-life care, does not have to be initiated by the patient. If the patient is deemed not to have decision-making capacity to make that decision, their healthcare proxy can decide to initiate the process and continue it until the patient dies. Individuals other than patients often choose to begin palliative sedation and continue it to its inevitable conclusion. And because palliative sedation does not require enabling legislation, none of the protective safeguards incorporated in MAiD legislation are available to protect those who receive palliative sedation. Some may try to differentiate between palliative sedation and MAiD by saying that once started, palliative sedation can always be discontinued – it need not end in the patient’s death. This is true, but the very process of palliative sedation will inevitably make the patient insensible or unconscious or otherwise unable to exercise a choice to stop sedation. With MAiD, the patient must self-administer and ingest the medication on their own, with death following quickly. The patient can choose to forgo MAID up until the very moment of self-administration. Considering MAiD’s procedural safeguards, including that only the patient may choose and administer MAiD, MAiD patients are offered more protection from potential abuse than patients who receive palliative sedation. While some have vocally opposed MAiD for decades, there has not been similar opposition to the option of voluntarily stopping eating and drinking (VSED). With VSED, adults with decision-making capacity make a voluntary decision to refuse nutrition and hydration to die more quickly. People choosing VSED are, essentially, making the same choice that people choosing MAiD do. But VSED is a less predictable process that takes much longer to complete. Unfortunately, the process also carries a risk of unpleasant side-effects, though proper care can help mitigate them. Additionally, the practice of VSED is not constrained by statutorily defined protective measures, as is the case with MAiD – one does not even need to have a terminal illness to choose VSED.[24] It is logically inconsistent for those who oppose MAiD because of the perceived potential of abuse to hold different views about VSED.[25] If malevolent actors can unethically pressure or coerce patients into MAiD, they can also coerce them to stop eating and drinking. As with palliative sedation, it could be argued that an important difference is that VSED can be stopped, unlike MAiD. This argument fails clinically and ethically. As with palliative sedation, the VSED process eventually results in the patient losing consciousness and decision-making capacity. The patient generally becomes unarousable for a period that could last for days or even weeks. For this reason, it is crucial for VSED patients to express their choice in writing (or preferably in video recording)[26] to ensure that they will not be given nutrition or hydration when they are no longer able to enforce their refusal (or if they begin asking for nutrition or hydration). Therefore, there is a period in which the patient cannot decide to end the process, just as with palliative sedation. To the extent that someone is so concerned with potential abuse of MAiD that they seek to ban it but have not expressed similar concerns with VSED, these positions are inconsistent. At a NYS Bar Association-sponsored conference on MAiD in 2019, David Hoffman asked a MAiD opponent whether, “as someone who is looking out for the interests of a segment of the disability population,” she supports palliative sedation and VSED.”[27] Kathryn Carroll, who represented the Center for Disability Rights (“CDR”), confirmed that CDR did not oppose palliative sedation and did not offer a position on VSED. She noted the subtle difference in intention: I don’t believe the Center for Disability Rights has taken issue with palliative sedation. And my understanding is that there is a key difference between palliative sedation and assisted suicide, particularly in that palliative sedation, the point is not to bring about the death of the person, but to relieve the pain that they are experiencing. And so the death is more of a side effect rather than the intended outcome.[28] During the questioning, she provided no explanation as to why the potential for abuse would be different among palliative sedation, VSED, and MAiD.[29] The other MAiD opponent on the panel, Dennis Vacco, of Vacco v. Quill[30] fame, interjected but could not explain any ethically significant difference between VSED and MAiD. Instead, he focused solely on palliative sedation, stating that the relevant difference is that palliative sedation can be stopped: . . . treating the pain including what you referred to as terminal sedation, is not moral and legally and ethnically the same as physician-assisted suicide . . . The fact of the matter is – the difference is you can terminate that treatment, and it’s the permanent aspect of physician-assisted suicide that goes back to what I said 20 minutes ago. You can’t put the bright line anyplace else other than where it is.[31] But, as discussed above, that difference is of little import, given that palliative sedation results in patients without the ability or capacity to make the choice to stop treatment. Vacco then reverted to his concerns about the potential for coercion and the elusive slippery slope, referencing his primary argument that the only way to ensure there is no abuse of a MAiD law is not to have one at all: The bright line that is created by the law in the state of New York, which makes physician-assisted suicide a manslaughter in the second-degree, or assisting suicide by anybody, manslaughter in the second degree . . . is unfortunately the only place that line can be. That line should not move further toward accommodation. And we see here in the context of . . . all of the so-called protections in the statute. With every protection that is not prohibition, with every protection, you raise the possibility of abuse. You raise the possibility with every protection.[32] Neither Vacco nor Carroll addressed the fact that many common practices today can be the result of coerced decisions. These practices have none of the safeguards contained in MAiD legislation. As another panelist, David Leven, stated: consider that people who want to have life-sustaining treatment withdrawn, whether it’s a ventilator or feeding tube, they can also be coerced by family members. That can happen even more often, of course, because that process takes place more and more often, and there are none of the safeguards that we’re talking about here . . . there are risks involved in any process which might result in a hastened death. But there seems to be very little risk involved with medical aid in dying based on the experience in 40 years and the nine states which now permit medical aid in dying.[33] There is an inescapable inconsistency within the disability argument: one cannot logically be so concerned about the abuse of legalized access to MAiD to justify opposing all MAiD legislation while simultaneously supporting options like palliative sedation or VSED as abuse-free alternatives. d. Argument Against Speaking for a Community with Diverse Views Finally, while some disability advocates opposing MAiD will claim terminally ill patients as part of their community, they have no right or authorization to speak for the extremely heterogeneous group of terminally ill patients or the disability community[34] as a whole. The disability community is not homogenous; while some members oppose MAiD, others support it.[35] Recent polling indicates that MAiD may have broad support across the disability community.[36] e. MAiD Opponents Hold the Rights of the Terminally Ill Subordinate to Their Personal Morality and Unsubstantiated Theoretical Concerns The argument that does not get much attention, the one that is the simplest and perhaps even the most compelling, is that all killing is wrong, and the government ought not to be in the business of enabling it. That is certainly a compelling religious and moral argument against individuals engaging in any form of acts that result in ending a human life. But such an ethical or theological position does not dictate that individuals who hold different views on personal morality should be precluded by the state from accessing the most safe, certain, and painless means of addressing an invariably terminal illness. Arguments like the one described above by Vacco (that the only way to completely avoid potential MAiD abuse is to prohibit MAiD) are essentially claiming that the safest thing to do is to subordinate the suffering of the terminally ill to avoid the more subtle task of balancing the interests of two different groups of New York state citizens. But surely, that is the role of the legislature every day. And we should expect no less from the legislature on this issue. The best way to ensure no one dies in car accidents is to prohibit driving. But instead of doing so, we implement safety regulations (like speed limits) to balance the right to travel with the right of everyone else not to be killed in the process. Evidence demonstrates that MAiD legislation can also strike a balance between the rights of the terminally ill and the need to prevent harm. It is not justifiable to support a blanket prohibition of MAiD. CONCLUSION Opponents of MAiD have had decades to cite problematic case studies or formulate a compelling moral argument against it that is grounded in data rather than an assertion of their personal morality. Plainly, no one on either side of the MAiD legislative discussion wants to see anyone subjected to involuntary euthanasia or coerced into MAiD as a better alternative to palliative care when such a plan of care is a viable alternative to “ending life care.” However, enough time has passed, and the risk of coercion has been given sufficient study and debate that we can now conclude, as a society, that the rights of the terminally ill and the rights of persons committed to living their best and longest life with a disability are wholly compatible. It is time for the legislature to strike the appropriate balance and give the terminally ill a well-regulated, responsible pathway to obtaining medication that can relieve their suffering in a manner that is safe, certain, and painless. - [1] Oregon’s Death with Dignity Act, Oregon Health Authority, https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/index.aspx [2] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [3] Medical Aid in Dying Act, A.995-A, N.Y. St. Assemb. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A; see also, Medical Aid in Dying Act, S.2445-A, N.Y. St. Senate (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/S2445A. [4] Id. [5] Ronald A. Lindsay, Oregon’s Experience: Evaluating the Record, 9 The American Journal of Bioethics 19 (2009), https://doi.org/10.1080/15265160802654137; Christopher A. Riddle, Medical Aid in Dying: The Case of Disability, in New Directions in the Ethics of Assisted Suicide and Euthanasia 234 (Michael Cholbi & Jukka Varelius eds., 2nd ed. 2023), https://doi.org/10.1007/978-3-031-25315-7; Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY ST. BAR ASSOC. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/; Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1; Fact: Medical Aid in Dying Laws Work to Protect Patients. (n.d.). Compassion & Choices. Retrieved September 5, 2023, from https://compassionandchoices.org/resource/fact-medical-aid-in-dying-laws-work-to-protect-patients; Frequently Asked Questions. (2021, December 7). Death With Dignity. https://deathwithdignity.org/resources/faqs/. [6] Bob Joondeph, Letter from Disability Rights Oregon (DRO), Compassion & Choices (Feb. 14, 2019), https://www.compassionandchoices.org/docs/default-source/default-document-library/disability-rights-oregon-dwd-letter-2-14-19.pdf. [7] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [8] Id. [9] Medical Aid in Dying: Act 39: Patient Choice and Control at the End of Life, Vermont Ethics Network, https://vtethicsnetwork.org/palliative-and-end-of-life-care/medical-aid-in-dying-act-39 (last visited Sept. 21, 2023). [10] Gideonse v. Brown, No. 3:21-cv-01568-AC (D. Or.); Bluestein v. Scott, No. 2:22-cv-00160 (D. Vt.). [11] Govatos v. Murphy, No. 2:23-cv-12601(D.N.J.). [12] Medical associations, historically opponents of MAiD, have begun adopting neutral positions, reflecting changing attitudes of the medical community. E.g., California Medical Association removes opposition to physician aid in dying bill, California Medical Association (May 20, 2015), https://www.cmadocs.org/newsroom/news/view/ArticleId/27210/California-Medical-Association-removes-opposition-to-physician-aid-in-dying-bill; Board directs CMS to develop and distribute “End-of-Life Act” education to members, Colorado Medical Society (November 22, 2016), https://www.cms.org/articles/board-directs-cms-to-develop-and-distribute-end-of-life-act-education-to-me; Vermont Medical Society Policy on End-of-life-Care, Vermont Medical Society (2017), https://vtmd.org/client_media/files/vms_resolutions/2017End-of-Life-Care.pdf (last accessed Sept. 21, 2023); but see Physician-Assisted Suicide, AMA Code of Ethics, https://code-medical-ethics.ama-assn.org/ethics-opinions/physician-assisted-suicide. (5.7 provides opinion opposing MAiD; opinion 1.1.7 provides opinion on conscientious objection.); The American Medical Association could vote to change its stance on medical aid in dying, Death with Dignity (Nov. 10, 2023), https://deathwithdignity.org/news/2023/11/ama-could-vote-to-change-stance-on-maid/ (Update notes that the AMA did not change its stance from opposed to neutral at its November 2023 interim meeting in Baltimore, but referred the resolutions for further study). [13] Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1. [14] Id. [15] Id. [16] Id. (noting the laws in Netherlands, Belgium and Canada.); see also National Council on Disability, The danger of assisted suicide laws: Part of the Bioethics and Disability series (2019). https://ncd.gov/sites/default/files/NCD_Assisted_Suicide_Report_508.pdf. [17] Sean Riley & Ben Sarbey, The unexamined benefits of the expansive legalization of medical assistance-in-dying, 19 J. Bioethical Inquiry 4, 663 (2022) (citing Oregon Health Authority Center for Health Statistics, Oregon Death with Dignity Act: 2018 Data Summary (2019), https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year21.pdf and R. Sean Morrison, et al., America’s care of serious illness: A state-by-state report card on access to palliative care in our nation’s hospitals, 14 J. Palliat. Med. 10, 1094–1096 (2011)). [18] Medical Aid in Dying Act, A.995-A, N.Y. St. Assembly. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A [19] See also, Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (cataloging research in multiple countries and concluding that “there is no evidence that assisted dying laws have a disproportionate effect on people with disabilities”). https://doi.org/10.1111/bioe.13036 [20] Eyder Peralta, As Planned, Right-To-Die Advocate Brittany Maynard Ends Her Life, NPR (Apr. 3, 2014), https://www.npr.org/sections/thetwo-way/2014/11/03/361094919/as-planned-right-to-die-advocate-brittany-maynard-ends-her-life (Activist Brittany Maynard moved to Oregon after she was diagnosed with a malignant brain tumor, because her home state did not permit MAiD at the time). [21] Ending life care is defined as the final stage of the end-of-life care continuum, where the patient chooses to end their life as a means to end their suffering or unacceptable quality of life. [22] Palliative sedation is defined as “the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life,” and it carries a risk of hastening death. Molly L. Olsen, Keith M. Swetz & Paul S. Mueller, Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments, 85 Mayo Clin Proc 949 (2010). https://doi.org/10.4065/mcp.2010.0201 [23] E.g. Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide, Not Dead Yet, https://notdeadyet.org/disability-rights-toolkit-for-advocacy-against-legalization-of-assisted-suicide (last visited Dec. 8, 2023) (describing palliative sedation as “a legal solution to any remaining painful and uncomfortable deaths; one that does not raise the very serious hazards of legalizing assisted suicide”); Testimony of CDR’s Kathryn Carroll, Esq. Opposing NY Assisted Suicide Bill A2383A, Not Dead Yet (Apr. 23, 2018), https://notdeadyet.org/testimony-of-cdrs-kathryn-carroll-esq-opposing-ny-assisted-suicide-bill-a2383a. [24] Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [25] This is not to say that MAiD and VSED are ethically identical. Different writers have articulated various reasons why MAiD and VSED are meaningfully different and meaningfully similar. Here we distinguish the potential for abuse, as this is the argument that persists among MAiD opponents, For a broader discussion on the ethics of VSED and how it compares to MAiD, see Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [26] Id.; see also David N. Hoffman and Judy Schwarz, Can Patients Choose to Stop Eating–Even If They Have Dementia–and Can Health Care Facilities Get Paid for Taking Care of Them? Ethics and Reimbursement at the End of Life (Am. Health L. Ass’n Conf. on Long Term Care and the Law 2020). [27] Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY St. Bar Assoc. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/. [28] Id. [29] CDR still does not appear to have articulated a position on VSED. CDR is a major and vocal opponent of MAiD legislation in NY with considerable resources (they state their projected 2010 budget was approximately $29,000,000). About Us, Center for Disability Rights, https://cdrnys.org/about/. [30] Vacco v. Quill, 521 U.S. 793 (1997) (holding that there is no equal protection violation when N.Y. law criminalized assisted-suicide but permitted removal of life-support systems). [31] Health Law Section: Duties, Rights & the Law at the End of Life (2019), supra note 5. [32] Id. [33] Id. [34] Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (providing evidence that “that people with disabilities, and disability rights organizations, have diverse views on the question of whether assisted dying should be legal”). https://doi.org/10.1111/bioe.13036 [35] Us for Autonomy, https://www.usforautonomy.org (last visited Sep 10, 2023); see also, Kathryn L. Tucker, Building Bridges Between the Civil Rights Movements of People with Disabilities and Those with Terminal Illness, 78 U. of Pitt. L. Rev. 329 (2017) (collecting and describing amici participation by disability advocates supporting end-of-life liberty). https://doi.org/10.5195/lawreview.2017.473 [36] E.g., USA/National Public Opinion Survey, Susquehanna Polling & Research, Inc. (Feb. 2023),https://d31hzlhk6di2h5.cloudfront.net/20230307/2e/9e/21/14/d37db7887f3f349202ae6f31/Raben_Crosstabulation_Report_2023.FINAL%20(1).pdf ).

IntroductionThis paper explores the different meanings that individuals from diverse ethnic backgrounds associate with being authentic. It builds on previous research (Menendez 11) that found quantitative differences in terms of the meanings individuals from Eastern and Western backgrounds tend to associate with being authentic. Using qualitative analysis, it describes in more detail how individuals from these two backgrounds construct their different meanings of authenticity.Authenticity has become an overriding moral principle in contemporary Western societies and has only recently started to be contested (Feldman). From cultural products to individuals’ discourses, authenticity pervades Western culture (Lindholm; Potter; Vannini and Williams). On an individual level, the ideal of authenticity is reflected in the maxim “be true to yourself.” The social value of authenticity has a relatively recent history in the Western world of approximately 200 years (Trilling). It started to develop alongside the notion of individuality during modernity (Taylor, Sources; Trilling). The Romantic movement consolidated its cultural influence (Taylor, Sources). In the 1960s, the Hippy movement revived authenticity as a countercultural discourse, although it has progressively become mainstream through consumer culture and therapeutic discourses (Binkley).Most of the studies in the literature on authenticity as a cultural phenomenon are theoretical, conducted from a philosophical perspective (Ferrara; Guignon; Taylor, Ethics), but few of them are empirical, mostly from sociology (Erickson; Franzese, Thine; Turner, Quest; Vannini, Authenticity). Part of this dearth of empirical research on authenticity is due to the difficulties that researchers encounter in attempting to define what it means to be authentic (Franzese, Authenticity 87). Sociologists study the phenomenological experience of being true to oneself, but are less attentive to the metaphysical notion of being a “true self” (Vannini, Dead 236–37). Trying to preserve this open approach, without judging individuals on how “authentic” they are, is what makes defining authenticity difficult. For this reason, sociologists have defined being authentic in a broad sense as “an individual’s subjective sense that their behaviour, appearance, self, reflects their sense of core being. One’s sense of core being is composed of their values, beliefs, feelings, identities, self-meanings, etc.” (Franzese, Authenticity 87); this is the definition of authenticity that I use here. Besides being scarce, the sociological empirical studies on authenticity have been conducted with individuals from Western backgrounds and, thus, have privileged authenticity as a Western cultural construct. This paper tries to contribute to this field of research by: (1) contributing more empirical investigation and (2) providing cross-cultural comparison between individuals from Eastern and Western backgrounds.The literature on cross-cultural values associates Eastern societies with collective (Hofstede, Hofstede and Mirkov 95–97; 112–17) and material or survival (Inglehart and Welzel 51–57; 61–65) values, while Western societies tend to be linked to the opposite kind of values: individual, post-material or self-expression (WVS). For example, societies that score high in survival values are likely to be African (e.g., Zimbabwe) Middle Eastern (e.g., Morocco and Jordan) or Asian (e.g., Bangladesh) countries, while societies that score high in self-expression values tend to be European (e.g., Sweden) or English speaking (e.g., Australia) countries. Nevertheless, there are some exceptions, the case of Japan, for example, which tends to score high in self-expression values despite being an “Eastern” society (WVS). These differences also tend to be reflected among Eastern minorities living in Western countries (Chua and Rubenfeld). Collective values emphasise harmony in relations and prioritise the needs of the group over the individual; on the other hand, individual values emphasise self-expression. Material or survival values accentuate the satisfaction of “basic” needs, in Abraham Maslow’s terms (21), such as physiological or security needs, and imply practising thrift and delaying immediate gratification; by contrast, post-material or self-expression values stress the satisfaction of “higher” needs, such as freedom of speech, equality, or aesthetic needs.The sociologist Ralph Turner (Real) created a theoretical framework to organize individuals’ discourses around authenticity: the “impulsive” and “institutional” categories. One of Turner’s assumptions is particularly important in understanding the differences between these two categories: individuals tend to consider the self as an objective entity that, despite only existing in their minds, feels “real” to them. This can have consequences for the meanings they ascribe to certain internal subjective states, such as cognitions or emotions, which can be interpreted as indicators of their authentic selves (990–91).The institutional and impulsive categories are two different ways of understanding authenticity that present several differences (991–95). Two among them are most relevant to understand the differences that I discuss in this paper. The first one has to do with the individual’s locus of the self, whether the self is conceptualized as located “outside” or “inside” the individual. Impulsive interpretations of authenticity have an internal sense of authenticity as “being,” while institutional conceptualizations have an external sense of authenticity as “becoming.” For “impulsives,” the authentic self is something that must be searched for. Impulsives look within to discover their “true self,” which is often in opposition to society’s roles and its expectations of the individual. On the other hand, for “institutionals” authentic is achieved through external effort (Turner, Quest 155); it is something that individuals achieve through regular practice, often aligned with society’s roles and their expectations of the individual (Turner, Real 992).The second difference has to do with the management of emotions. For an institutional understanding of authenticity, individuals are true to their own authentic selves when they are in full control of their capacities and emotions. By contrast, from an impulsive point of view, individuals are true to themselves when they are spontaneous, accepting and freely expressing their emotions, often by breaking the internal or external controls that society imposes on them (Turner, Real 993).Although individuals can experience both types of authenticity, previous research on this topic (Menendez) has shown that institutional experiences tend to happen more frequently among Easterners, and impulsive experiences tend to occur more frequently among Westerners. In this paper, I show how Easterners and Westerners construct institutional and impulsive meanings of authenticity respectively; what kind of authenticity work individuals from these two backgrounds do when they conceptualize their authentic selves; how they interpret internal subjective states as expressions of who they are; and what stories they tell themselves about who they are.I suggest that these stories, although they may look purely individual, can also be social. Individuals from Western backgrounds tend to interpret impulsive experiences of authenticity as expressing their authentic selves, as they are informed by the individual and post-material values of Western societies. In contrast, individuals from Eastern backgrounds tend to interpret institutional experiences of authenticity as expressing their authentic selves, as they have been socialized in the more collective and material values of Eastern societies.Finally, and before I proceed to the analysis, I would like to acknowledge a limitation of this study. The dichotomies that I use to explain my argument, such as the Western and Eastern or the impulsive and institutional categories, can constitute a limitation for this paper because they cannot reflect nuances. They can be easily contested. For example, the division between Eastern and Western societies is often seen as ideological and Turner’s distinction between institutional and impulsive experiences of authenticity can create artificial separations between the notions of self and society or reason and passion (Solomon 173). However, these concepts have not been used for ideological or simplifying purposes, but to help explain distinguishable cultural orientations towards authenticity in the data.MethodologyI completed 20 interviews (from 50 minutes to 2 hours in length) with 20 students at La Trobe University (Australia), between September 2012 and April 2013. The 20 interviewees (9 females and 11 males), ranged from 18 to 58 years old (the median age was 24 years old). The sample was theoretically designed to cover as many diverse cultural backgrounds as possible. I asked the interviewees questions about: moments they had experienced that felt either authentic and inauthentic, what constitutes a life worth-living, and the impact their cultural backgrounds might have had on their conceptions of their true selves.The 20 interviewees were born in 13 different countries. According to the extensive dataset on cultural values, the World Values Survey (WVS), these 13 countries have different percentages of post-materialists—individuals who choose post-material instead of material values (Inglehart and Welzel 54–56). Table 1 shows the percentages of post-materialists in each of the interviewees’ countries of birth. Table 1: Percentages of post-materialists in the interviewees’ countries of birth Country % of post-materialists WVS Wave United Kingdom 22.8 2005 – 2009 Australia 20.5 2010 – 2014 United States 16.7 2010 – 2014 Israel 11.6 2000 – 2004 Finland 11.3 2005 – 2009 Greece (Turkey) 10.7 2010 – 2014 South Africa 7.7 2005 – 2009 Malaysia 5.6 2010 – 2014 Ghana 4.2 2010 – 2014 India 4 2005 – 2009 China 2.5 2010 – 2014 Egypt 1.1 2010 – 2014 Note: These data are based on the 4-item post-materialism index question (Y002) of World Values Survey (WVS). I use three different waves of data (2000–2004, 2005–2009, and 2010–2014). Greece did not have any data in World Values Survey, so its data have been estimated considering the results from Turkey, which is the most similar country in geographical and cultural terms that had data available.In my model, I consider “Western” societies as those that have more than 10% post-materialists, while “Eastern” societies have less than 10% post-materialists. As shown in Table 1 and mentioned earlier, Western countries (English speaking or European) tend to have higher percentages of post-materialists than Eastern societies (African, Asian and Middle Eastern).Thus, as Table 2 shows, the interviewees who were born in a Western society are ascribed to one group, while individuals born in an Eastern society are ascribed to another group. Although many overseas-born interviewees have lived in Australia for periods that range from 6 months to 10 years, they were ascribed to the “East” and “West” groups solely based on their country of birth. Even though these individuals may have had experiences of socialization in Australia, I assume that they have been primarily socialized in the values of their ethnic backgrounds and the countries where they were born, via their parents’ educational values or through direct experience, during the time that they lived in their countries of birth. According to my definition of authenticity, individuals’ values inform their understanding of authenticity, therefore, the values from their ethnic backgrounds can also influence their understanding of authenticity.In the first phase of the analysis, I used Grounded Theory (Charmaz), with categories directly emerging from the data, to analyse my interviewees’ stories. In the second stage, I reviewed these categories in combination with Turner’s categories of impulsive and institutional, applying them to classify the stories.Table 2: Distribution of participants between “East” and “West” West (n=11) East (n=9) Australia (n=5) China (n=2) United Kingdom (n=2) India (n=2) United States (n=1) South Korea (n=1) Greece (n=1) South Africa (n=1) Finland (n=1) Egypt (n=1) Israel (n=1) Ghana (n=1) Malaysia (n=1) ResultsAlthough I interviewed 20 participants, due to space-constraints, I illustrate my argument with only 4 interview extracts from 4 of the interviewees: 2 interviewees from Western backgrounds and 2 from Eastern backgrounds. However, these stories are representative of the trends found for the whole sample. I show how Easterners and Westerners construct their authentic selves in institutional and impulsive senses respectively through the two key characteristics that I presented in the introduction: locus of the self and management of emotions.In the first instance, Rachel (from Australia, 24 years old), a Western respondent, shows an impulsive locus of the self as “being.” Authenticity is discovered through self-acceptance of an uncomfortable emotion, like a “bad mood:”I think the times when I want to say, ‘oh, I wasn’t myself’, I usually was. My bad moods are more ‘me’. My bad moods are almost always the ‘real me’. [So you consider that your authentic self is something that is there, inside you, that you have to discover, or it is something outside yourself, that you can achieve?] I think it is something that you have to discover for yourself. I think it is different for everyone. [But would you say that it is something that is there already or it is something that you become?] No, I think it is something that is there already.On the other hand, Rani (from China, 24 years old), an Eastern respondent, interprets authenticity as “becoming;” authenticity does not pre-exist—as in the case of Rachel—but is something “external” to her idea of self. Rani becomes herself by convincing herself that she conforms to society’s ideals of physical beauty. Unlike the process of self-acceptance that Rachel described, Rani develops authentic selfhood by “lying” to herself or, as she says, “through some lies”:I have heard this sentence, like ‘you have to be yourself to others’, but I think it is really hard to do this. I think people still need some ‘acting’ things in their life. You need to act, not to say to act as another person, but sometimes like let’s say to be polite or make other people like you, you need acting. And sometimes if you are doing the ‘acting things’ a lot, you are going to believe this is true (she laughs). [Like others will believe that you are something that you are not?] I think at the beginning, maybe that’s not, but… because some people wake up every morning and say to the mirror, ‘you are very beautiful, you are the most beautiful girl in the world’, then, you will be happy and you will actually become beautiful. I think it is not like lie to yourself, but it is just being confident. Maybe at the beginning you are not going to believe that you are beautiful… like, what is this sentence? ‘Being true to yourself’, but actually doing this everyday, then that’s true, you will become, you will be confident. [So that means you can be yourself also through…] Through some lies. [So you don’t think that there is something inside you that you have to kind of discover?] No.Eastern and Western respondents also tend to interpret emotions differently. Westerners are more likely to interpret them in more impulsive terms than Easterners, who interpret them in a more institutional light. As we can see in the following extract, Sean, a Western respondent (born in Australia, but raised in England, 41 years old), feels inauthentic because he could not express his dislike of a co-worker he did not get along with:In a six months job I had before I came to Australia, I was an occupational therapist in a community. There was a girl in the administration department who was so rude. I wanted to say: ‘look darling you are so rude. It is really unpleasant talking to you. Can you just be nice? It would be just so much better and you will get more done and you will get more from me’. That’s what I should have said, but I didn’t say it. I didn’t, why? Maybe it is that sort of culture of not saying things or maybe it is me not being assertive enough. I don’t think I was being myself. Because my real self wanted to say: ‘look darling, you are not helping matters by being a complete bitch’. But I didn’t say that. I wasn’t assertive enough.In a similar type of incident, Ben, an Eastern respondent (from Ghana, 32 years old), describes an outburst he had with a co-worker who was annoying him. Unlike Sean, Ben expressed his anger to the co-worker, but he does not consider this to be a manifestation of his authentic self. For Ben, to act authentically one must control their emotions and try help others:I don’t know if that is myself or if that is not myself, but sometimes I get angry, I get upset, and I am the open type. I am the type that I can’t keep something in me, so sometimes when you make me annoyed, I just response. There is this time about this woman, in a class, that I was in Ghana. She was an older woman, a respected woman, she kept annoying me and there was one day that I couldn’t take it any longer, so I just burst up and I just… I don’t know what I said, I just… said a lot of bad things to her. The woman, she was shocked. I also felt shocked because I thought I could control myself, so that’s me… I don’t want to hide my feelings, I just want to come out with what I think when you make me annoyed, but those times, when I come out, I don’t like them, because I think it contradicts who I really am, someone who is supposed to help or care. I don’t like that aspect. You know somebody could be bossy, so he or she enjoys shouting everybody. I don’t enjoy that, but sometimes it is something that I cannot even control. Someone pushes me to the limit, and I just can’t keep that anger, and it comes out. I won’t say that is ‘me,’ I wouldn’t say that that is me. I don’t think that is a ‘true me’. [Why?] Because the true me would enjoy that experience the way I enjoy helping people instead.Unlike the two accounts from Rachel and Rani, these two last passages from Sean and Ben describe experiences of inauthenticity, where the authentic self cannot be expressed. What is important in these two passages is not their behaviour, but how they attribute their own emotions to their sense of authentic selfhood. Sean identifies his authentic self with the “impulsive” self who expresses his emotions, while Ben identifies his authentic self with the “institutional” self who is in control of his emotions. Sean feels inauthentic because he could not express his angry feelings to the co-worker, whereas Ben feels inauthentic because he could not control his outburst. Ben still hesitates about which side of himself can be attributed to his authentic self, for example, he says that he is “the open type” or that he does not want to “hide [his] feelings”, but he eventually identifies his authentic self with his institutional self.The choices that Sean and Ben make about the emotions that they attribute to their authentic selves could be motivated by their respective ethnic backgrounds. Like Rachel, Sean identifies his authentic self with a socially unacceptable emotion: anger. Consistent with his Western background, Sean’s sense of authenticity emphasizes the needs of the individual over the group and sees suppression of emotions as repressive. On the other hand, Ben reasons that since he does not enjoy being angry as much as he enjoys helping others, expressing anger is not a manifestation of authenticity. His authentic self is linked to his institutional self. Ben’s values are infused with altruism, which reflects the collective values that tend to be associated with his Eastern background. For him, suppression of emotions might not mean repression, but can foster authenticity instead.DiscussionBoth ways of interpreting authenticity, impulsive and institutional, look for self-consistency and the need to tell a coherent story to ourselves about who we are. The results section of this paper showed how Easterners and Westerners conceptualize authenticity. Easterners understand authenticity differently to Western discourses of the authentic. These alternative understandings offer viable solutions to the self-consistency problem. They present external, rather than internal, ways of conceiving the authentic self, and regulative, rather than expressive, approaches to emotions. As I mentioned earlier, Eastern societies are associated with collective and material values, while Western ones are related to individual and post-material values. These divisions in terms of values are reflected in individuals’ self-constructs. Individuals in Western societies tend to have a more independent idea of the self, whereas individuals in Eastern societies are more likely to have an interdependent one (Kitayama). An interdependent idea of the self values connectedness and conceptualizes the self in relation to others, so it can generate an institutional approach to authenticity, where the idea of the authentic self is not something that individuals search for inside themselves, but something that individuals become through their participation in social roles. This was evident in the example of Rani, whose idea of being authentic as “becoming” seemed to be an extension of her more interdependent self-construct and the need to fit in society.A regulative approach to emotions has also been associated with Easterners (Cheung and Park), on the basis of their collective values and interdependent self-constructs. For individuals from a Western background, with a more independent sense of self, as in the case of Sean, suppressing emotions tends to be seen negatively as being inauthentic, a form of repression. However, for individuals with interdependent self-constructs, this can be not only less harmful (feeling less inauthentic), but can even be beneficial because they tend to prioritize the needs of others (Le and Impett). This is evident in the example of Ben, for whom suppressing aanger does not make him feel inauthentic because he identifies his authentic self with the self that is in control of his emotions and helps others. This understanding of authenticity is aligned with the collective values of his ethnic background.In sum, ideas of authenticity seem to vary culturally according to the repertoires and values systems that inform them. 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Photo by Adhy Savala on Unsplash ABSTRACT During a crisis, when healthcare capacity becomes overwhelmed and cannot meet regular standards of patient care, crisis standards of care are invoked to distribute scarce hospital space, staff, and supplies. When transitioning between conventional standards of care and crisis standards, hospitals may have to manage resources under scarcity constraints in an intermediate phase defined as the contingency phase. While much attention has been paid to the ethics of crisis standard of care protocols, contingency measures were more widely implemented, though little exists within the literature on the ethics of contingency measures or a clearly explicated contingency standard of care. This paper addresses three ethical issues with the current contingency response to COVID-19: the lack of formalization, the risks of using short-term solutions for prolonged contingency shortages, and the danger of exacerbating health disparities through hospital-level resource allocation. To mitigate these ethical issues, I offer recommendations for reimagining resource allocation during contingency standards of care. INTRODUCTION When transitioning between conventional standards of care and crisis standards, or in situations where shortages do not immediately threaten care delivery, hospitals may have to manage scarce resources in an intermediate phase, known as the “contingency” phase.[1] While much attention has been paid to the ethics of crisis standards, less literature covers the ethics of contingency measures or a clearly explicated contingency standard of care. Many states and hospital systems do not have contingency standards of care to dictate allocation absent an event triggering crisis standards. Crisis standards of care, used when healthcare capacity becomes overwhelmed and cannot meet regular standards of patient care, reflect ethical priorities relevant in times of shortage or other emergencies. These priorities include saving the most lives, the stewardship of scarce resources, and justice relating to equitable resource distribution.[2] Crisis standards of care delineate specialized allocation protocols and triage decision-making bodies at the institutional or state levels. Crisis standards of care require formal activation at the state level, and in the absence of clear triggers or governmental willingness to use them, hospitals may adopt informal strategies to manage allocation in the form of contingency measures. The contingency phase is defined by two simultaneous goals: prevent or stall crisis-level scarcity by managing limited resources and providing patient care that is functionally equivalent to usual care.[3] In other words, allocate scarce resources with no significant health consequences to patients. However, this is an unrealistic expectation: meeting a patient’s medical needs and allocating resources on the basis of scarcity instead of medical indications can be at odds, creating ethical tension. This paper addresses three ethical issues with the current contingency response stemming from this tension: the lack of formalization, the risk of using short-term solutions for prolonged contingency shortages, and the danger of exacerbating health disparities through hospital-level resource allocation. To mitigate these ethical issues, I offer recommendations for reimagining resource allocation during contingency standards of care. l. Lack of Formalization One shortcoming of current contingency measures is that they fail to meet the same level of procedural detail and clarity as crisis standards. The early COVID-19 surges in Italy and France demonstrated the pitfalls of bedside allocation in the absence of procedural guidance. The acute scarcity of critical care resources forced doctors in these countries to make allocation decisions at the bedside, which often resulted in de facto age-based allocation as well as experiences of moral distress and shame among providers.[4] In France, medical allocation guidelines and statistics were never released to the public, raising concerns over the role of transparency in implementing crisis standards and triage guidelines and causing the public to question the trustworthiness of provider triage.[5] Though many states in the US have crisis standards of care that can be implemented in the case of a large-scale triage event, these measures vary widely. A 2020 review of 31 crisis standards of care in the US found that only 18 contained strong “ethical grounding,” 28 used “evidence-based clinical processes and operations,” 21 included “ongoing community and provider engagement, education, and communication,” and 16 had “clear indicators, triggers, and lines of responsibility.”[6] The need for standardization, public transparency, and guidelines for crisis standards of care to prevent bedside allocation has been widely recognized. However, these issues remain unresolved by public policy or legislative efforts during the contingency period before (or after) crisis standards apply. A recent public health study that observed triage team members in a high-fidelity triage simulation highlighted the challenges of making equitable frontline allocation decisions.[7] In the simulation, participants nudged patient priority status up or down depending on what they subjectively identified as morally relevant factors. Through the simulation, participants reported difficulty separating implicit biases about patient characteristics from their clinical judgment. In the absence of formal institutional or regional guidelines for allocation during contingency-level shortages, there are few to no procedural safeguards against biased, ad hoc, and non-transparent rationing. Without formalized or standardized contingency allocation guidance, providers are left to make bedside allocation decisions that are susceptible to individual biases and patterns of unintended discrimination. An example of this susceptibility is seen when hospitals allow patients who no longer benefit from ICU resources to continue occupying ICU beds. This is based on a first-come-first-served (FCFS) approach to bed allocation. FCFS is often a default for patient intake, which led to disparities in care access during the early COVID-19 pandemic. Media reports of hospitals with “plenty of space” being unwilling to accept patients from overwhelmed, lower-income hospitals illustrate that the FCFS default advantages those who could show up first to a particular hospital: often privileged, well-funded healthcare systems that were inaccessible to low-income communities.[8] FCFS is blind to several morally relevant factors, including the likelihood of survival to discharge, reciprocity (i.e. prioritizing healthcare workers), and varying degrees of access to healthcare. Therefore, it inappropriately privileges those in proximity to healthcare systems or with social connections enabling greater initial access to care.[9] During crisis standards of care, excessive mortality that would result from FCFS is mitigated through formalized system-wide triage protocols based on current patient health status and potential benefit from resources. Crisis and contingency standards may provide liability coverage for providers who reallocate critical care beds away from those who no longer benefit during periods of scarcity. This liability coverage shifts bed allocation away from an FCFS model, but only if the policy is well-defined, clearly established, and known to providers. Without a formal system to guide the process or transition from the usual method of allocation to the contingency period, contingency decisions about who gets a scarce resource may continue to operate on an implicit FCFS basis, even when approaching crisis levels of scarcity. Additionally, these decisions will fall unsustainably on individual providers or transfer center workers, leading to moral distress on the frontlines when hospitals are already strained. Lessons from the crisis and contingency responses during COVID-19 can improve future contingency responses. There are multiple ways of achieving equity during contingency allocation, ranging from hospital-level to state-level policy changes. State-wide policies and interventions to facilitate resource-sharing can relieve some of the scarcity burdens that hospitals may face during the contingency period. For example, moving ICU patients to lower levels of care once they have sufficiently recovered is a challenge for doctors, who often call other hospitals to find open beds. In these situations, providers who do not move patients who no longer benefit from ICU beds unknowingly reinforce the FCFS system in which those who arrive first keep the scarce beds, while those who arrive later or wait for one are disadvantaged by having limited access to them. State-wide patient transfer centers, often facilitated by state public health departments, present an alternative by balancing patient needs and bed distribution more equitably and efficiently than individual physicians do, as demonstrated following COVID-19 surges in hospitalization.[10] These centers aid not only in allocating open tertiary care beds, but also in identifying open beds at lower levels of care and assisting physicians with transferring out patients who can be safely downgraded and no longer benefit from tertiary care resources. However, the simplest solution is to encourage the creation of ethics guidance or protocols for contingency allocation at the hospital level. In hospitals, institutional ethics guidance can help providers navigate difficult decisions and conversations with patients. When providers face time-sensitive allocation decisions, like the allocation of open ICU beds, the guidance would be a useful tool for making transparent, principled, and ethically justified allocation decisions in real-time to mitigate the risk of ad hoc or implicit rationing. ll. Unsuited for Prolonged Resource Shortages Secondly, neither contingency nor crisis standards are currently designed to respond to prolonged strains on the healthcare system. Since the start of the pandemic, a prolonged period of staffing shortages began and is projected to persist.[11] However, both crisis and contingency standards assume that the system will eventually return to conventional standards of care. For example, as a contingency or crisis standard, many hospitals deferred elective surgeries to preserve limited resources for emergency and life-saving procedures. Massachusetts, for instance, issued a public health emergency order that required hospitals to defer 50 percent of all non-essential and non-urgent (elective) surgeries. This order demonstrates the use of this contingency measure in response to prolonged staffing and bed shortages.[12] However, the deferral of elective procedures can result in adverse long-term community health consequences. Medical conditions typically addressed through elective surgery, such as joint replacement surgeries for osteoarthritis patients, may worsen if delayed. This can result in greater numbers of acute emergencies, the need for more complex surgical procedures later, increased reliance on pain medications, and longer recovery times.[13] Without a greater understanding of long-term complications in community health, existing contingency strategies, such as the deferral of elective surgeries, may be unsuitable for prolonged shortages. This becomes a greater threat to patient safety when contingency measures inappropriately take the place of crisis standards, risking the long-term implementation of emergency measures designed for temporary use. Although some state emergency planning documents identify indicators and triggers for activating contingency and crisis operations,[14] this transition is not always clear in action. For example, New York did not implement crisis standards of care during the early COVID-19 pandemic despite being one of the hardest-hit cities in the US.[15] Other states, including California, Texas, and Florida, did not activate crisis standards of care, leaving hospitals to implement informal contingency measures that ultimately required allocation strategies very similar or identical to many crisis standards of care protocols.[16] Due to the hesitance to activate crisis standards, ad hoc contingency measures and bedside decision-making prevailed over formal triage protocols. If contingency measures are not set forth in objective documents and are inappropriately used in the place of crisis standards, these short-term measures may result in an unfair or non-transparent distribution of scarce resources. When shortages in space, staff, or supplies jeopardize the ability to provide necessary care for critically ill patients under a conventional standard of care, failures to activate crisis standards risk the inappropriate use of ad hoc contingency measures in their place. With clear contingency standards of care, the duration of an ad hoc approach could be limited. Crisis standards are defined and activated at the regional or state-wide level, but outside of hospital-specific resource limitations, there are generally no standardized indications or triggers for transitioning into and out of contingency measures. Leaving contingency needs to individual hospitals may seem beneficial but defining the contingency period at the hospital level and the crisis period at the state or regional level blurs the line about when it is appropriate for decision makers to activate crisis standards, risking delayed activation or failure to activate them at all. Therefore, it is important that state policies implement automatic triggers for activation that clearly delineate between contingency and crisis responses.[17] Automatic triggers based on validated metrics like remaining available resources can inform the appropriate decision makers about when they must activate crisis standards. These triggers should be transparent to the public, validated, and updated over time with evolving data. These automatic triggers would prevent confusion, inconsistent guidelines, and inequitable contingency allocation at the hands of distressed providers when crisis standards are needed. Defining when to begin crisis standards could help limit the length of the contingency period. This would protect against the inappropriate application of contingency measures to crisis-level scarcity and prolonged shortages that they could not sustainably ameliorate. lll. Potential to Exacerbate Health Disparities Inconsistencies in contingency allocation open the door to disparities in care and unequal distribution of scarcity burdens among different communities based on their location or health needs. This is a concern because it is unclear whether contingency measures can meet their goal of achieving functionally equivalent patient outcomes when resource allocation must be balanced with patient-centered care.[18] The care under contingency standards is meant to be functionally equivalent to regular care. The definition assumes (or may wrongly suggest) that any contingency strategy in place to avoid critical scarcity has no significant impact on patient outcomes. While functional equivalence is attainable, there is currently little research into which contingency measures achieve functionally equivalent outcomes and which patient groups may be disproportionately affected by harmful resource allocation strategies. Although the transition from contingency standards to crisis standards is defined by the inability to provide functionally equivalent care, the difference in practice may merely be a distinction between visible, immediate sacrifices to patient well-being during crises and less-obvious, long-term decrements in community health due to protracted contingency care alterations. Two common contingency measures are cause for concern over disparate patient outcomes and the attainability of functional equivalence. First, restricting emergency room visits by the patient’s degree of need has worrying consequences. In late 2021 and early 2022, hospitals in Massachusetts faced widespread staffing shortages, leading to an emergency order that restricted emergency visits to emergency needs.[19] While this order is a reasonable method of allocating limited staff in the emergency department during severe shortages, it is doubtful that the outcomes of this restriction were equivalent to usual care. Health issues that are soon-to-be emergencies are filtered out until they worsen, resulting in patients overflowing to urgent care clinics or presenting to ERs with more severe forms of sicknesses later on. Given the empirical evidence demonstrating ER treatment and admission disparities that disadvantage Black and Hispanic patients, such a measure would only exacerbate these disparities by further limiting access to needed care.[20] Second, altered staffing ratios, which stretch a limited number of providers to meet patient needs during a staffing shortage, are another concerning yet common contingency measure. Staffing allocation is often viewed similarly to the allocation of space and medical equipment, such that contingency alterations to staffing operations may not seem like they significantly jeopardize patient care quality and outwardly appear functionally equivalent.[21] However, lower ratios of qualified nurses are associated with poor outcomes such as higher inpatient mortality[22] and lower survival rates of in-hospital cardiac arrest for Black patients.[23] These examples highlight the strong potential for contingency measures to amplify social health disparities, particularly when adopted over a prolonged time frame. Lowered standards of care in crisis allocation disproportionately impact racial and ethnic minorities.[24] For example, crisis standards of care used clinical scoring systems that were not developed or validated for crisis triage to prioritize access to life-saving treatments during the COVID-19 pandemic. This practice actively gives rise to racial health disparities and discrimination against disabled patients.[25] Not only were the standards inequitable in practice, but they varied widely from state to state and sometimes even from hospital to hospital, creating disparities across and within geographic regions.[26] If contingency measures are similarly implemented across hospitals or hospital departments without standardization or advance planning to ensure equitable outcomes, it is likely that the burden of a lower standard of care will fall primarily on disadvantaged patient groups and racial minorities. However, standardization alone may be insufficient. Other factors like varying levels of details on patients’ charts between hospitals could produce unfair outcomes if used to determine patient admission or transfer priority, even if the criteria for admissions and transfers are consistent. Thus, ongoing monitoring for unintended patterns of disparity must accompany standardization to ensure that blind spots in the allocation process are identified and corrected. Bioethics has long been preoccupied with the micro-allocation of limited resources within hospitals instead of confronting the structural inequities that underlie broader scarcity and patient needs. The traditional dilemma of allocating limited hospital resources among a certain number of patients overlooks questions about how other resources have already been allocated, which patients were present at the hospital in the first place, where hospitals have (and have not) been built, and whether previous allocation strategies created bias in the broader distribution of resources. Therefore, to achieve fairness, bioethicists must pay attention to aspects of the broader distribution of resources, such as social determinants of health and the allocation of preventative resources at the public health level. One strategy for measuring and addressing these disparities is the Area Deprivation Index (ADI). The ADI quantifies the effects of race, class, and socioeconomic background by geographic region for use in public health research and the prioritization of resources.[27] It has shown promise in identifying geographic regions in need of targeted community health efforts for diabetes management based on electronic patient health records.[28] The ADI and similar tools would be useful in proactively deciding how to allocate public health resources when hospitals are strained. Moreover, through using population health and resource data, public health organizations may forecast contingency shortages allowing for the adoption of early measures to mitigate health disparities that might otherwise be amplified from hospital-level contingency allocation decisions. CONCLUSION Meeting community health needs during periods of contingency scarcity, both before and after crisis standards of care apply, will require contingency standards of care rather than a bedside ad hoc distribution of scarce resources. While it is not inherently ethically unjustifiable for hospitals to adopt measures that may lower the standard of care during contingency standards, the necessity of these measures requires that bioethicists consider how equity, transparency, and the overall aim of functional equivalence can best be achieved under conditions of scarcity. The long-term health consequences of existing contingency measures, the potential for ad hoc and inconsistent allocation of scarce resources, and the need for consensus about when it becomes appropriate to make the formal transition to crisis standards of care demand further consideration. Because contingency measures will likely amplify existing disparities as crisis standards have, hospital-level management of scarcity is inadequate. Public health measures should be adopted in parallel to anticipate and manage health needs at the community or state level when resources are strained. - [1] Altevogt, B. M., Stroud, C., Hanson, S. L., Hanfling, D., & Gostin, L. O. (2009). Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: A Letter Report. The National Academies Press. https://doi.org/10.17226/12749 [2] Emanuel, E. J., Persad, G., Upshur, R., Thome, B., Parker, M., Glickman, A., Zhang, C., Boyle, C., Smith, M., & Phillips, J. P. (2020). Fair Allocation of Scarce Medical Resources in the Time of Covid-19. New England Journal of Medicine, 382(21), 2049–2055. https://doi.org/10.1056/NEJMsb2005114 [3] Alfandre, D., Sharpe, V. A., Geppert, C., Foglia, M. B., Berkowitz, K., Chanko, B., & Schonfeld, T. (2021). Between Usual and Crisis Phases of a Public Health Emergency: The Mediating Role of Contingency Measures. The American Journal of Bioethics, 21(8), 4–16. https://doi.org/10.1080/15265161.2021.1925778 [4] Rosenbaum, L. (2020). Facing Covid-19 in Italy—Ethics, Logistics, and Therapeutics on the Epidemic’s Front Line. New England Journal of Medicine, 382(20), 1873–1875. https://doi.org/10.1056/NEJMp2005492 [5] Orfali, K. (2020). What Triage Issues Reveal: Ethics in the COVID-19 Pandemic in Italy and France. Journal of Bioethical Inquiry, 17(4), 675–679. https://doi.org/10.1007/s11673-020-10059-y [6] Romney, D., Fox, H., Carlson, S., Bachmann, D., O’Mathuna, D., & Kman, N. (2020). Allocation of Scarce Resources in a Pandemic: A Systematic Review of US State Crisis Standards of Care Documents. Disaster Medicine and Public Health Preparedness, 14(5), 677–683. https://doi.org/10.1017/dmp.2020.101 [7] Butler, C. R., Webster, L. B., Diekema, D. S., Gray, M. M., Sakata, V. L., Tonelli, M. R., & Vranas, K. C. (2022). Perspectives of Triage Team Members Participating in Statewide Triage Simulations for Scarce Resource Allocation During the COVID-19 Pandemic in Washington State. JAMA Network Open, 5(4), e227639. https://doi.org/10.1001/jamanetworkopen.2022.7639 [8] Dwyer, J. (2020, May 14). One Hospital Was Besieged by the Virus. Nearby Was ‘Plenty of Space.’—The New York Times. The New York Times. https://www.nytimes.com/2020/05/14/nyregion/coronavirus-ny-hospitals.html [9] Persad, G., Wertheimer, A., & Emanuel, E. J. (2009). Principles for allocation of scarce medical interventions. Lancet (London, England), 373(9661), 423–431. https://doi.org/10.1016/S0140-6736(09)60137-9 [10] Mitchell, S. H., Rigler, J., & Baum, K. (2022). Regional Transfer Coordination and Hospital Load Balancing During COVID-19 Surges. JAMA Health Forum, 3(2), e215048. https://doi.org/10.1001/jamahealthforum.2021.5048 [11] ASPE. (2022, May 3). Impact of the COVID-19 Pandemic on the Hospital and Outpatient Clinician Workforce: Challenges and Policy Responses. ASPE. https://aspe.hhs.gov/reports/covid-19-health-care-workforce [12] Executive Office of Health and Human Services. (2021). Baker-Polito Administration Provides COVID-19 Update on Mask Advisory, Hospital Support | Mass.gov. https://www.mass.gov/news/baker-polito-administration-provides-covid-19-update-on-mask-advisory-hospital-support [13] The Lancet Rheumatology. (2021). Too long to wait: The impact of COVID-19 on elective surgery. The Lancet Rheumatology, 3(2), e83. https://doi.org/10.1016/S2665-9913(21)00001-1 [14] For an example of transition planning between crisis and contingency standards, see Minnesota Department of Health. (2021). Ethical Framework for Transitions Between Conventional, Contingency, and Crisis Conditions in Pervasive or Catastrophic Public Health Events with Medical Surge Implications (Minnesota Crisis Standards of Care). https://www.health.state.mn.us/communities/ep/surge/crisis/framework_transitions.pdf [15] Powell, T., & Chuang, E. (2020). COVID in NYC: What We Could Do Better. The American Journal of Bioethics, 20(7), 62–66. https://doi.org/10.1080/15265161.2020.1764146 [16] Persoff, J., & Wynia, M. K. (2021). Ethically Navigating the Murky Waters of “Contingency Standards of Care.” The American Journal of Bioethics, 21(8), 20–21. https://doi.org/10.1080/15265161.2021.1939810 [17] Board on Health Sciences Policy & Institute of Medicine. (2013). Indicators and Triggers. In Crisis Standards of Care: A Toolkit for Indicators and Triggers. National Academies Press (US). http://www.ncbi.nlm.nih.gov/books/NBK202381/ [18] Frith, L., Draper, H., Fovargue, S., Baines, P., Redhead, C., & Chiumento, A. (2021). Neither ‘Crisis Light’ nor ‘Business as Usual’: Considering the Distinctive Ethical Issues Raised by the Contingency and Reset Phases of a Pandemic. The American Journal of Bioethics, 21(8), 34–37. https://doi.org/10.1080/15265161.2021.1940363 [19] Rosseau, M. (2022, January 14). New emergency orders issued to help understaffed Mass. Hospitals. Boston.Com. https://www.boston.com/news/coronavirus/2022/01/14/new-emergency-orders-issued-to-help-understaffed-mass-hospitals/ [20] Zhang, X., Carabello, M., Hill, T., Bell, S. A., Stephenson, R., & Mahajan, P. (2020). Trends of Racial/Ethnic Differences in Emergency Department Care Outcomes Among Adults in the United States From 2005 to 2016. Frontiers in Medicine, 7. https://www.frontiersin.org/articles/10.3389/fmed.2020.00300 [21] Hick, J. L., Hanfling, D., & Wynia, M. (2022). Hospital Planning for Contingency and Crisis Conditions: Crisis Standards of Care Lessons from COVID-19. The Joint Commission Journal on Quality and Patient Safety. https://doi.org/10.1016/j.jcjq.2022.02.003 [22] Musy, S. N., Endrich, O., Leichtle, A. B., Griffiths, P., Nakas, C. T., & Simon, M. (2021). The association between nurse staffing and inpatient mortality: A shift-level retrospective longitudinal study. International Journal of Nursing Studies, 120, 103950. https://doi.org/10.1016/j.ijnurstu.2021.103950 [23] Brooks Carthon, M., Brom, H., McHugh, M., Sloane, D. M., Berg, R., Merchant, R., Girotra, S., & Aiken, L. H. (2021). Better Nurse Staffing Is Associated With Survival for Black Patients and Diminishes Racial Disparities in Survival After In-Hospital Cardiac Arrests. Medical Care, 59(2), 169–176. https://doi.org/10.1097/MLR.0000000000001464 [24] Annas, G. J., & Crosby, S. S. (2021). Standard Racism: Trying to Use “Crisis Standards of Care” in the COVID-19 Pandemic. The American Journal of Bioethics, 21(8), 1–3. https://doi.org/10.1080/15265161.2021.1941424 [25] Wynia, M. K., & Sottile, P. D. (2020). Ethical Triage Demands a Better Triage Survivability Score. The American Journal of Bioethics, 20(7), 75–77. https://doi.org/10.1080/15265161.2020.1779412 [26] Fink, S. (2020). Ethical Dilemmas in Covid-19 Medical Care: Is a Problematic Triage Protocol Better or Worse than No Protocol at All? The American Journal of Bioethics, 20(7), 1–5. https://doi.org/10.1080/15265161.2020.1788663 [27] Knighton, A. J., Savitz, L., Belnap, T., Stephenson, B., & VanDerslice, J. (2016). Introduction of an Area Deprivation Index Measuring Patient Socioeconomic Status in an Integrated Health System: Implications for Population Health. EGEMS (Washington, DC), 4(3), 1238. https://doi.org/10.13063/2327-9214.1238 [28] Kurani, S. S., Lampman, M. A., Funni, S. A., Giblon, R. E., Inselman, J. W., Shah, N. D., Allen, S., Rushlow, D., & McCoy, R. G. (2021). Association Between Area-Level Socioeconomic Deprivation and Diabetes Care Quality in US Primary Care Practices. JAMA Network Open, 4(12), e2138438. https://doi.org/10.1001/jamanetworkopen.2021.38438

ABSTRACT This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductive medicine in blogs and news stories published during 2021 in response to the first baby’s birth using polygenic risk scores (PRS) derived from genome-wide association studies. We further contextualize the findings by synthesizing the emerging peer-reviewed bioethics literature on the issue, which has emphasized considerations regarding the child-parent future relationship, equity of access, and the absence of professional guidelines. Our media content analysis has established that expert opinion was prominently featured in news coverage, with bioethicists and other academics contributing 38 percent of articles and providing extensive commentary on ethical, social, and policy implications in the articles written by journalists. The overall perspective towards the use of PES was primarily negative (59 percent of the articles), without significant differences in negativity and positivity between experts and science reporters. This indicates a shift from the predominantly neutral attitudes towards the technology in media discourse prior to its deployment in clinical settings. There is heightened awareness that offering these tests to prospective parents is unethical and can create unrealistic expectations, with the two most prominent arguments being uncertainty about the prediction accuracy of polygenic risk scores in this context (72 percent of the articles) and the potential of PES to lead to a eugenic future of human reproduction that normalizes the discrimination of people based on their genetics (59 percent of the articles). INTRODUCTION The possibility of using genetic technologies to engineer the perfect baby has long haunted the public imagination. While some techno-utopians have openly advocated for human genetic enhancement, many critics have warned that advances in DNA technology come with myriads of ethical dilemmas and potentially dangerous social consequences. Literary and cinematic works have offered dystopian visions of our genetic futures—from Aldous Huxley’s powerful socio-political fantasy in his book Brave New World (1932) to cult classics of sci-fi cinema, such as Blade Runner (1982) and Gattaca (1997), there has been no shortage of ominous predictions that genetic engineering would lead to a new form of eugenics, which would ultimately create new social hierarchies grounded on genetic discrimination. Moreover, concerns about the use of genetic and genomic technologies for social control have been entangled with deep philosophical questions about personal autonomy, the right of the child to an open future, and the morality of changing, improving, or redesigning human nature.1 The perennial debate on human enhancement was recently reignited with a new controversy over the use of pre-implantation screening of embryos using polygenic risk scores.2 While the profiling of IVF embryos to detect hereditary, monogenetic diseases has been widely accepted, some companies are now pushing the envelope with unrealistic promises of tests that can predict genetic possibilities for desirable traits such as a child’s intelligence, athletic ability, and physical appearance. One event that prompted a public outcry in late 2021 was news about the birth of the first baby from an embryo selected through polygenic testing, a girl named Aurea.3 Although the embryo screening in Aurea’s case was used to decrease the likelihood for certain health conditions, many commentators believed that it signaled a real possibility of embryo selection for non-medical reasons becoming a commercial procedure in the foreseeable future, especially in the largely unregulated US fertility market.4 In the past, there have been discrepancies in how ethical and policy issues arising from advances in reproductive medicine have been viewed by experts (e.g., bioethicists, philosophers, legal scholars) and presented in the news. Like other advances in medical genetics, gene editing and screening technologies have been frequently characterized by exaggeration, sensationalism, and hype around clinical possibilities.5 Moreover, news media have often amplified the anticipated health benefits of genetic testing while overlooking uncertainty associated with its clinical validity and emerging ethical concerns, as shown in a recent study of the media portrayal of non-invasive prenatal testing (NIPT).6 The issue of polygenic embryo screening (PES) initially gained traction in the media in 2017 when the New Jersey biotech startup Genomic Prediction made headlines with claims that its testing technology could identify and avoid implanting embryos with very low IQs.7 The company also claimed that it had the capability to identify embryos with high IQs, although it committed not to offer that procedure for ethical reasons.8 The media coverage of polygenic risk scoring of human embryos between 2017 and 2019 was previously analyzed in a study published in BMC Medical Ethics in September 2021.9 This media content analysis has established that while most news articles were neutral towards the technology, one of the most significant critiques raised by science reporters was the absence of solid scientific evidence for the technology’s predictive accuracy and its practical value in IVF settings. It has also identified five major ethical concerns articulated by science reporters that have also been addressed in the academic discourse and within broader policy debates on reproductive technologies: a slippery slope towards designer babies, well-being of the child and parents, impact on society, deliberate choice, and societal readiness. In this article, we examine the discourse on PES in bioethics blogs, opinion articles, and news stories published in 2021, with a specific focus on reactions to the birth of the first polygenic risk score baby. We compare the perspectives of experts and science reporters to establish their attitudes towards PES, the main ethical themes in press coverage, and the key issues highlighted for a future policy debate. We also juxtapose our findings to the previous study of media coverage to establish if the case of baby Aurea has raised any new issues and pressing ethical concerns. I. Polygenic Embryo Screening in Reproductive Medicine While complex diseases and human traits result from a combination of genetic, lifestyle, and environmental factors, genomic medicine is quickly gaining momentum, and demands for genetic tests in clinical practice have significantly increased. Scans and analyses of genomes from various populations, a research area known as genome-wide association studies, have enabled scientists and researchers to identify genetic differences or variants associated with a particular trait or medical condition. These variants can be combined into a polygenic risk score that predicts an individual’s traits or increased risk for a certain disease. For instance, PES have been used to predict a range of diverse common conditions, from diabetes and cancer to attention deficit issues10 and, in some cases, well-being in general.11 This testing modality relies on the probabilistic susceptibility of individuals to certain diseases to offer personalized medical treatments and inform therapeutic interventions. Polygenic embryo screening uses polygenic risk scores to assess an embryo’s statistical risks of developing diseases (e.g., cardiovascular diseases) and potentially traits (e.g., intelligence, athletic ability, among others) and is performed in an IVF setting. It is currently marketed by several US companies such as MyOme, OrchidHealth, and Genomic Prediction to prospective parents as a method to screen pre-implantation embryos for health and non-health related conditions and is accessible to those who can afford to pay for it. As stated in a recent report on companies bringing PES into reproductive medicine, Genomic Prediction has already made their test for polygenic disorders, LifeView, available to couples. In contrast, Orchid Health has only recently invited couples to an early-access program for their testing technology, and MyOme is still in the process of launching its own test.12 In September 2021, Bloomberg first reported the birth of baby Aurea using screening conducted by Genomic Prediction. She was born after her parents used IVF and subsequently PES to select from 33 candidate pre-implantation embryos in 2020.13 Aurea’s embryo was deemed to have the best genetic odds of avoiding conditions such as breast cancer, diabetes, heart disease, and schizophrenia in adulthood. It is worth noting that Genomic Prediction made the announcement almost one year following Aurea’s birth, thus delaying the media’s reaction to this development and the ensuing bioethical and policy debates. II. Ethical, Social, and Policy Implications Some important ethical, social, and regulatory considerations regarding the development and clinical use of PES have been raised within the academic community. The bioethics literature on the issue, however, appears rather thin, which is not surprising given that prior to 2021, the possibility of using this screening method in clinical practice was largely hypothetical. Other genomic technologies that have enabled polygenic embryo selection, such as whole-genome sequencing and pre-implantation genetic diagnosis, have received more attention from bioethicists, legal scholars, and Ethical, Legal, and Social Implications (ELSI) researchers. Our analysis of the emerging literature has shown that some proponents of PES advocate its current use and go as far as to suggest a permissive regulatory environment for the purpose of outpacing the ethical concerns and potential restrictions once the technology becomes widely available. This approach suggests that embryo selection should be allowed for or against any trait associated with higher odds for better health and well-being in general, often without further discussion of what accounts for wellbeing.14 Scholars applying the principle of procreative beneficence to defend the use of PES have also argued for regulation that addresses issues of justice and equality and expands access to the procedure for those who are currently unable to afford it. By contrast, opponents have argued that the clinical utility of this embryo selection method is yet to be proven, and its current use may create unrealistic expectations in parents, making it an unethical practice to offer the procedure as part of IVF treatments.15 They state that predictive models from PRS have been developed with data from genomes of adult populations. Therefore, extrapolating results for embryo screening, along with the absence of a research protocol to validate its diagnostic effectiveness, is dangerous and misleading.16 Another layer of complexity is added because PRS already faces many translational hurdles that would undermine its predictive value assessment for certain traits or diseases. Scientists have noted that PRS take into consideration the genetic component of a particular trait putting aside the effects of other non-genetic factors, such as lifestyle and environment, which might interfere and influence the calculation of these scores.17 Discussions on the ethics and societal implications of PES in the bioethics literature can be grouped into three distinct categories: 1) relational issues between parents and the future child (e.g., selection as identity-determining, concerns about the instrumentalization of children and the child’s right to an open future); 2) concerns about social justice and equality (e.g., fears about a new eugenics that establishes new social hierarchy, limited access to the technology due to its cost); and 3) implementation and regulatory concerns (e.g., lack of professional guidelines and advertising of PES by private companies). An important ethical implication of PES relates to the well-being of the future child and the way that selecting children based on their genetic make-up might negatively affect the parent-child relationship. This is in line with previously raised ethical concerns in the literature around cloning and pre-implantation genetic diagnosis that by choosing a child’s genetic predisposition, we are limiting to and, in some cases, denying their right to an open future. For instance, the future child’s options would be restricted if parents chose a genetic predisposition to musicality that might interfere with the child’s ability to make certain life choices.18 On a societal level, there are concerns PES may alter social perceptions of what is “normal” and “healthy,” resulting in discrimination and stigmatization of certain conditions.19 Related to this are fears about encouraging eugenic attitudes that can exacerbate discrimination against people with disabilities. Furthermore, one of the main ethical concerns raised is that the growing use of PES might exacerbate societal pressure to use this technology, influencing parents’ decisions to select the embryo with the “best” genetics giving rise to a generation of “designer babies.” 20 Finally, direct-to-consumer marketing and clinical introduction of the technology prior to the publication of professional guidelines and in the absence of scientific validity for its use, as well as without appropriate regulatory oversight, is seen as a premature step that might erode public trust.21 III. News Stories and Expert Commentary on Polygenic Embryo Screening in 2021 We conducted searches on google news using keywords such as “polygenic embryo screening,” “polygenic risk scores,” “baby Aurea,” and “embryo selection” and selected blogs and articles from major news sources (e.g., Washington Post, New York Times, Wall Street Journal, LA Times, Guardian, The Times, etc.). An additional effort was made to collect all relevant articles from prominent bioethics blogs such as the Hastings Center Bioethics Forum, Impact Ethics, Bioethics.net, Biopolitical Times (Center for Genetics and Society), among others. The time period for the study was one year, from January 1 to December 31, 2021. While most coverage occurred after the Bloomberg report on the birth of the first baby using PES, there were a number of news stories and blogs in response to a special report on embryo selection based on polygenic risk scores published in the New England Journal of Medicine on July 1, 2020.22 This report, which has received significant attention in the press, warns that companies that offer genetic services can create unrealistic expectations in health providers and prospective parents through their marketing practices. It has further emphasized the scientific uncertainty around the predictive results of PRS in the context of embryo selection. In general, our search has established that the news media coverage on PES over the past year has revolved around these two events – the NEJM Report and the announcement about the first baby born after PES. In total, we collected 29 publications, of which 12 were blog posts and 17 publications under the general category of “news,” including ten news articles, three opinion pieces/perspective articles, two press releases, and one radio broadcast transcript (see Supplementary Material). IV. Methods for content analysis We utilized an inductive-deductive process to develop coding categories for a systematic content analysis of the blogs and new articles. The first author undertook a close reading of the entire dataset to derive inductively recurrent themes and ethical arguments in the media representations of PES. Based on this preliminary analysis, both authors agreed on the categories for textual analysis. The coding book was further refined by using a deductive approach that incorporates themes that have been previously articulated in the scholarly literature on the issue, particularly questions about the perceived attributes of the test, ethical concerns, and emerging policy considerations. The following categories were used to analyze key issues and attitudes towards PES expressed by experts and science journalists: a. Claims that PES is unethical because it violates the future child’s autonomy. b. Concerns about PES as a step towards eugenics and/or genetic discrimination. c. Defenses of PES with arguments that parents have a duty to give the child the healthiest possible start in life (and reduce public health burden). d. Claims that the science behind PRS-based diagnostics is uncertain, and it will take some time to prove its clinical validity. e. Concerns about the equality of access to PES. f. Arguments that PES can exacerbate ethnic and racial inequality (e.g., that most polygenic scores are created using DNA samples from individuals of European ancestries and predictions may not be accurate in other populations). g. Arguments that PES provides health benefits and can help overcome genetic and health inequalities. h. Concerns about the negative impact that PES may have on the child-parent relationship. i. Arguments about the need for better regulatory oversight of PES. j. Suggestions that there is an urgent need for deliberation and debate on the societal and ethical implications of PES. k. Concerns that patients and clinicians may get the impression that the procedure is more effective and less risky than it is. l. Assessment of whether the article’s perspective towards the use of PES is positive, negative, or neutral. We used yes/no questions to detect the frequencies of mentions in each category, except on the last question, which required a more nuanced, qualitative assessment of the overall tone of the articles. We coded articles as “positive” when the authors viewed the technology favorably and emphasized its potential health benefits over its negative implications. Articles that did not condone the current use of PES and expressed strong concerns about the predictive accuracy of this testing method, its readiness for clinical use, and highlighted its controversial ethical and social implications were coded as “negative.” Finally, articles that simply presented information about the topic and quoted experts on the advantages and disadvantages of using PRS for embryo selection without taking a side or expressing value judgments were coded as “neutral.” Acknowledging the complex polysemic nature of media texts, we took into consideration that support or disapproval of PES may be implicit and expressed by giving credence to some experts’ opinions over others. Therefore, we coded articles that mostly cited expert opinion favorable to PES, or alternatively, presented such views as more credible, as “positive”, while we coded articles that emphasized critical perspectives as “negative.” V. Media Discourse and Expert Opinion On PES We found out that perspectives and opinions by experts were prominently featured in both news (17 articles) and blogs (12 articles). The blog posts in our dataset were written by university professors in bioethics (four articles), academics from other disciplines such as medicine, political science, psychology, human genetics, and neurobiology (four articles), and science journalists and editors (four articles). Furthermore, three of the news articles in influential newspapers and magazines such as The Wall Street Journal, The Washington Post, and The Scientific American were opinion articles or commentaries contributed by academics (e.g., a psychology professor, specializing in personality, individual differences, and behavior genetics, a sociology professor, and a director of research in a graduate program in human genetics). The remaining 14 news articles in our dataset were written by science reporters, editors, or other staff writers. Altogether, experts contributed 38 percent of the media coverage (11 articles) on the issue of PES and its wider societal implications. Experts’ comments were also heavily featured in the 18 articles written by science reporters and other media professionals, which accounted for 68 percent of the dataset. Of these articles, 17 extensively cited experts with academic and research backgrounds (professors and research scientists), seven articles quoted industry representatives (e.g., CEOs and spokespersons of Genomic Prediction and Orchid, other commercial developers), and four articles included opinions by parents seeking PES, particularly Aurea’s father, North Carolina neurologist Rafal Smigrodzki, who argued that a parent’s duty is to prevent disease in their child.23 The overall perspective towards the use of PES was mostly negative – 59 percent (17 articles) expressed negative attitudes, while 24 percent (seven articles) were positive and 17% (five articles) were neutral in tone and did not advance arguments in favor or against the technology and its adoption. However, we did not establish significant differences in negativity and positivity between experts and science reporters. For instance, 49 percent of the articles with negative attitudes were written by experts, while 53 percent were authored by science reports. Similarly, the articles by experts with positive perspectives on PES accounted for 13 percent of the dataset, while science reporters contributed 11 percent of the positive articles. VI. Major Themes and Issues The most discussed issue in media coverage was the prediction accuracy of polygenic risk scores and the uncertainties regarding the utility of these tests in embryo screening. Our analysis has established that 72 percent of the articles (21 out of 29) argued that the science behind PES-based diagnostics is uncertain, and it will take some time to prove its clinical validity. The second most frequently mentioned issue was the potential of PES to lead to a eugenic future of human reproduction. More than half of the articles (59 percent or 17 out of 29) raised concerns that PES could become a step towards a new form of eugenics that could eventually normalize the discrimination of people based on their genetics. Despite concerns about the accuracy of PES testing, many articles gave extensive attention to problems concerning equality of access to PES and related diagnostic services, with 49 percent of the articles (13 out of 29) expressing concerns that the procedure is currently offered at a high cost, it is not covered by health insurance plans, and people of lower socioeconomic status cannot afford it. Furthermore, 41 percent of the articles (12 out of 29) raise concern that the current use of PES reflects the existing ethnic and racial inequalities since most PES are created using DNA samples from individuals of European ancestries, and predictions may not be accurate in other populations. Although it has been reported that Genomic Prediction considers offering the procedure to parents of non-European ancestries, their messaging has suggested it would take a significant time to provide them with predictive models that are as relevant as those for European populations.24 The health benefits of this testing technology, its regulation, and the need for a wider debate on how to realize its promise in a responsible manner were also addressed, albeit to a lesser extent. The potential to overcome genetic and health inequalities by selecting healthy embryos with the best odds against diseases and chronic conditions was emphasized in 41 percent of the articles (12 out of 29). The regulation was a topic covered in 38 percent of the articles (11 out of 29), in which the authors argued that better regulatory oversight of PES is needed, especially in the present condition of an unregulated US market for genetic testing. Additionally, 38 percent suggested that there is an urgent need for deliberation and public debate on the societal and ethical implications of PES. Finally, the issue that patients and clinicians may get the wrong impression that the procedure is more effective and less risky was addressed in 31 percent (nine out of 29). We have established that critical issues about how PES may affect the well-being of the future child and the child-parent relationship have received less attention. For instance, only 17 percent of the articles (five out of 29) supported the clinical use of PES with arguments that parents have a moral obligation to give the child the healthiest possible start in life, a line of thought that is prominent in the bioethics literature on procreative beneficence and procreative autonomy.25 These authors also maintained that the technology has the potential to provide benefits to individuals and reduce the burden of disease and public health expenditure. Similarly, just 10 percent of the articles (three out of 29) expressed concerns about the negative impact that PES may have on the child-parent relationship by causing relational asymmetries between generations and limiting the autonomy of the future child. CONCLUSION Our content analysis has shown that the media discourse on PES and the birth of baby Aurea has been highly influenced by expert opinion. In fact, leading experts from bioethics and a range of other academic disciplines contributed 38 percent of the content in the form of blogs, opinion articles, and commentaries, published on prestigious bioethics fora and in the popular press. Furthermore, as our analysis has shown, science reporters have heavily relied on expert opinion in writing stories about the ethical challenges and societal implications of PES. One important finding of our study is the prevalence of negative attitudes towards the technology, as opposed to past media representations of PES, which had been neutral towards the technology.26 This change in attitudes is likely caused by the amplified voices of bioethics experts reacting to the first clinical use of the technology, which made hypothetical ethical dilemmas a very real possibility. As far as the thematic focus of media representations is concerned, the birth of the first baby using PES has raised ethical concerns similar to those highlighted in the literature on PES and embryo selection through pre-implantation genetic diagnosis, with the most prominent issue being the absence of robust scientific evidence for the predictive accuracy of PRS modeling and its practical value in IVF settings. Although the critical nature of media discourse can contribute to raising public awareness about the ethical acceptability of the technology, bioethicists should also examine the effect of economic forces and societal pressures to have a perfect child that may be driving prospective parents to seek such unproven genetic interventions. PES is an emerging niche in a large, unregulated market for genetic testing services that has the potential to shape the future of reproductive medicine, and there is an urgent need for a policy debate on how it can be developed responsibly and ethically. 1 J. Habermas, "The Debate on the Ethical self-Understanding of the Species," The Future of Human Nature (Oxford, UK: Blackwell Publishing, 2003): p. 16-100. 2 Polygenic risk scores (PRS) are used in personalized medicine to predict disease risk in different human populations, not necessarily for risk modelling in embryos. Polygenic embryo screening (PES), on the other hand, involves the clinical use of PRS modelling from genome-wide association studies of adult populations for selecting embryos with the lowest probability of developing certain health conditions in adulthood. It could potentially be used to select embryos with a higher probability for inheritance of certain physical traits or complex characteristics. 3 C. Goldberg, "Picking Embryos With Best Health Odds Sparks New DNA Debate," Bloomberg September 17, 2021. 4 D. Conley, "A new age of genetic screening is coming — and we don’t have any rules for it," The Washington Post June 14, 2021. 5 K. Kamenova, A. Reshef, and T. Caulfield, "Angelina Jolie's faulty gene: newspaper coverage of a celebrity's preventive bilateral mastectomy in Canada, the United States, and the United Kingdom," Genetics in Medicine 16, no. 7 (2014): 522-28. 6 K. Kamenova et al., "Media portrayal of non-invasive prenatal testing: a missing ethical dimension," Journals of Science Communication 15, no. 2 (2016): 1-19. 7 B. Talat, Choosing the "Smartest" Embryo: Embryo Profiling and the Future of Reproductive Technology, (Canadian Institute for Genomics and Society, March 14, 2019), https://www.genomicsandsociety.com/post/choosing-the-smartest-embryo-embryo-profiling-and-the-future-of-reproductive-technology8 E. Parens, S. P. Applebaum, and W. Chung, "Embryo editing for higher IQ is a fantasy. Embryo profiling for it is almost here.," Statnews, February 12, 2019. 9 T. Pagnaer et al., "Polygenic risk scoring of human embryos: a qualitative study of media coverage," BMC Medical Ethics 22, no. 1 (2021): 1-8. 10 E. L. de Zeeuw et al., "Polygenic scores associated with educational attainment in adults predict educational achievement and ADHD symptoms in children," American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics 165b, no. 6 (2014): 51020. 11 A. Okbay et al., "Genetic variants associated with subjective well-being, depressive symptoms, and neuroticism identified through genome-wide analyses," Nature Genetics 48, no. 6 (2016): 624-33. 12 F. Ray, "Embryo Selection From Polygenic Risk Scores Enters Market as Clinical Value Remains Unproven," (December 22, 2021). https://www.genomeweb.com/sequencing/embryo-selection-polygenic-risk-scores-enters-market-clinical-value-remainsunproven#.YeVWzvhOk2w13 J. Savulescu, "The moral case for eugenics?," IAI News, September 28, 2021, https://iai.tv/articles/the-moral-case-for-eugenicsauid-1916. 14 S. Munday and J. Savulescu, "Three models for the regulation of polygenic scores in reproduction," Journal of Medical Ethics 47, no. 12 (2021): 1-9. 15 F. Forzano et al., "The use of polygenic risk scores in pre-implantation genetic testing: an unproven, unethical practice," European Journal of Human Genetics (2021). 16 Forzano et al., 1-3.; P. Turley et al., "Problems with Using Polygenic Scores to Select Embryos," The New England Jourmal of Medicine 385, no. 1 (2021): 78-86. 17 N. J. Wald and R. Old, "The illusion of polygenic disease risk prediction," Genetics in Medicine 21, no. 8 (2019): 1705-7. 18 M. J. Sandel, "The case against perfection: what's wrong with designer children, bionic athletes, and genetic engineering," Atlantic Monthly 292, no. 3 (2004): 50-4, 56-60, 62. 19 H. Haidar, "Polygenic Risk Scores to Select Embryos: A Need for Societal Debate," Impact Ethics (blog), November 3, 2021, https://impactethics.ca/2021/11/03/polygenic-risk-scores-to-select-embryos-a-need-for-societal-debate/. 20 Pagnaer et al., " 1-8. 21 Forzano et al., 1-8. 22 Turley et al., 78-86. 23 P. Ball, "Polygenic screening of embryos is here, but is it ethical?," The Guardian, October 17, 2021. 24 W. K. Davis, "A New Kind of Embryo Genetics Screening Makes Big Promises on Little Evidence," Slate, July 23, 2021, https://slate.com/technology/2021/07/prs-model-snp-genetic-screening-counseling.html. 25 J. Savulescu, "Procreative beneficence: why we should select the best children," Bioethics 15, no. 5-6 (2001): 413-26. 26 Pagnaer et al., 1-8.

What began as a simple request for a book by one of my former students, at times, has not been so simple. The student, whom I refer to as Carla (name changed), hoped to read about characters similar to herself and her friends. As a teacher, I have often tried to hook my students on reading by presenting books with characters to which they can relate. These books can help increase their overall knowledge of the world, open their minds to multiple realities and variations of the human experience and provide scenarios in which they can live vicariously. Carla’s request was a bit more complicated than I had imagined. As a “Deaf” student who attended a state school for the Deaf and who viewed herself as a member of a linguistic cultural minority, she expected to read a book with characters who used American Sign Language and who participated as members within the Deaf Community. She did not want to read didactic books about deafness but wanted books with unpredictable plots and believable characters. Having graduated from a teacher-preparation program in Deaf Education, I had read numerous books about deafness. While memoirs and biographical selections had been relatively easy to acquire and were on my bookshelf, I had not once read any fictional books for adolescents that included a deaf character. (I refer to ‘Deaf’ as representing individuals who identify in a linguistic, cultural minority group. The term ‘deaf’ is used as a more generic term given to individuals with some degree of hearing loss. In other articles, ‘deaf’ has been used pejoratively or in connection to a view by those who believe one without the sense of hearing is inferior or lacking. I do not believe or wish to imply that. ) As a High School teacher with so many additional work responsibilities outside of classroom teaching, finding fictional books with deaf characters was somewhat of a challenge. Nevertheless, after some research I was able to recommend a book that I thought would be a good summer read. Nancy Butts’ Cheshire Moon (1992) is charming book about thirteen-year-old Miranda who is saddened by her cousin’s death and furious at her parents' insistence that she speak rather than sign. The plot turns slightly mystical when the teens begin having similar dreams under the “Cheshire moon”. Yet, the story is about Miranda, a deaf girl, who struggles with communication. Without her cousin, the only member of her family who was fluent in sign language, communication is difficult and embarrassing. Miranda feels isolated, alienated, and unsure of herself. Because of the main character’s age, the book was not the best recommendation for a high school student; however, when Carla finished Cheshire Moon, she asked for another book with Deaf characters. Problem & Purpose Historically, authors have used deafness as a literary device to relay various messages about the struggles of humankind and elicit sympathy from readers (Batson & Bergman; Bergman; Burns; Krentz; Panara; Taylor, "Deaf Characters" I, II, III; Schwartz; Wilding-Diaz). In recent decades, however, the general public’s awareness of and perhaps interest in deaf people has risen along with that of our increasingly multicultural world. Educational legislation has increased awareness of the deaf as has news coverage of Gallaudet University protests. In addition, Deaf people have benefited from advances in communicative technology, such as Video Relay (VRS) and instant messaging pagers, more coordinated interpreting services and an increase in awareness of American Sign Language. Authors are incorporating more deaf characters than they did in the past. However, this increase does not necessarily translate to an increase in understanding of the deaf, nor does it translate to the most accurate, respectably, well-rounded characterization of the deaf (Pajka-West, "Perceptions"). Acquiring fictional books that include deaf characters can be time-consuming and challenging for teachers and librarians. The research examining deaf characters in fiction is extremely limited (Burns; Guella; Krentz; Wilding-Diaz). The most recent articles predominately focus on children’s literature — specifically picture books (Bailes; Brittain). Despite decades of research affirming culturally authentic children’s literature and the merits of multicultural literature, a coexisting body of research reveals the lack of culturally authentic texts (Applebee; Campbell & Wirtenberg; Ernest; Larrick; Sherriff; Taxel). Moreover, children’s books with deaf characters are used as informational depictions of deaf individuals (Bockmiller, 1980). Readers of such resource books, typically parents, teachers and their students, gain information about deafness and individuals with “disabilities” (Bockmiller, 1980; Civiletto & Schirmer, 2000). If an important purpose for deaf characters in fiction is educational and informational, then there is a need for the characters to be presented as realistic models of deaf people. If not, the readers of such fiction gain inaccurate information about deafness including reinforced negative stereotypes, as can occur in any other literature portraying cultural minorities (Pajka-West, "Perceptions"). Similar to authors’ informational depictions, writers also reveal societal understanding of groups of people through their fiction (Banfield & Wilson; Panara; Rudman). Literature has often stigmatized minority culture individuals based upon race, ethnicity, disability, gender and/or sexual orientation. While readers might recognize the negative depictions and dismiss them as harmless stereotypes, these portrayals could become a part of the unconscious of members of our society. If books continually reinforce stereotypical depictions of deaf people, individuals belonging to the group might be typecast and discouraged into a limited way of being. As an educator, I want all of my students to have unlimited opportunities for the future, not disadvantaged by stereotypes. The Study For my doctoral dissertation, I examined six contemporary adolescent literature books with deaf characters. The research methodology for this study required book selection, reader sample selection, instrument creation, book analysis, questionnaire creation, and data analysis. My research questions included: 1) Are deaf characters being presented as culturally Deaf characters or as pathologically deaf and disabled; 2) Do these readers favor deaf authors over hearing ones? If so, why; and, 3) How do deaf and hearing adult readers perceive deaf characters in adolescent literature? The Sample The book sample included 102 possible books for the study ranging from adolescent to adult selections. I selected books that were recognized as suitable for middle school or high school readers based upon the reading and interest levels established by publishers. The books also had to include main characters who are deaf and deaf characters who are human. The books selected were all realistic fiction, available to the public, and published or reissued for publication within the last fifteen years. The six books that were selected included: Nick’s Secret by C. Blatchford; A Maiden’s Grave by J. Deaver; Of Sound Mind by J. Ferris; Deaf Child Crossing by M. Matlin; Apple Is My Sign by M. Riskind; and Finding Abby by V. Scott. For the first part of my study, I analyzed these texts using the Adolescent Literature Content Analysis Check-off Form (ALCAC) which includes both pathological and cultural perspective statements derived from Deaf Studies, Disability Studies and Queer Theory. The participant sample included adult readers who fit within three categories: those who identified as deaf, those who were familiar with or had been acquaintances with deaf individuals, and those who were unfamiliar having never associated with deaf individuals. Each participant completed a Reader-Response Survey which included ten main questions derived from Deaf Studies and Schwartz’ ‘Criteria for Analyzing Books about Deafness’. The survey included both dichotomous and open-ended questions. Research Questions & Methodology Are deaf characters being presented as culturally Deaf or as pathologically deaf and disabled? In previous articles, scholars have stated that most books with deaf characters include a pathological perspective; yet, few studies actually exist to conclude this assertion. In my study, I analyzed six books to determine whether they supported the cultural or the pathological perspective of deafness. The goal was not to exclusively label a text either/or but to highlight the distinct perspectives to illuminate a discussion regarding a deaf character. As before mentioned, the ALCAC instrument incorporates relevant theories and prior research findings in reference to the portrayals of deaf characters and was developed to specifically analyze adolescent literature with deaf characters. Despite the historical research regarding deaf characters and due to the increased awareness of deaf people and American Sign Language, my initial assumption was that the authors of the six adolescent books would present their deaf characters as more culturally ‘Deaf’. This was confirmed for the majority of the books. I believed that an outsider, such as a hearing writer, could carry out an adequate portrayal of a culture other than his own. In the past, scholars did not believe this was the case; however, the results from my study demonstrated that the majority of the hearing authors presented the cultural perspective model. Initially shocking, the majority of deaf authors incorporated the pathological perspective model. I offer three possible reasons why these deaf authors included more pathological perspective statements while the hearing authors include more cultural perspective statements: First, the deaf authors have grown up deaf and perhaps experienced more scenarios similar to those presented from the pathological perspective model. Even if the deaf authors live more culturally Deaf lifestyles today, authors include their experiences growing up in their writing. Second, there are less deaf characters in the books written by deaf authors and more characters and more character variety in the books written by the hearing authors. When there are fewer deaf characters interacting with other deaf characters, these characters tend to interact with more hearing characters who are less likely to be aware of the cultural perspective. And third, with decreased populations of culturally Deaf born to culturally Deaf individuals, it seems consistent that it may be more difficult to obtain a book from a Deaf of Deaf author. Similarly, if we consider the Deaf person’s first language is American Sign Language, Deaf authors may be spending more time composing stories and poetry in American Sign Language and less time focusing upon English. This possible lack of interest may make the number of ‘Deaf of Deaf’ authors, or culturally Deaf individuals raised by culturally Deaf parents, who pursue and are successful publishing a book in adolescent literature low. At least in adolescent literature, deaf characters, as many other minority group characters, are being included in texts to show young people our increasingly multicultural world. Adolescent literature readers can now become aware of a range of deaf characters, including characters who use American Sign Language, who attend residential schools for the Deaf, and even who have Deaf families. Do the readers favor deaf authors over hearing ones? A significant part of my research was based upon the perceptions of adult readers of adolescent literature with deaf characters. I selected participants from a criterion sampling and divided them into three groups: 1. Adults who had attended either a special program for the deaf or a residential school for the deaf, used American Sign Language, and identified themselves as deaf were considered for the deaf category of the study; 2. Adults who were friends, family members, co-workers or professionals in fields connected with individuals who identify themselves as deaf were considered for the familiar category of the study; and, 3. hearing adults who were not aware of the everyday experiences of deaf people and who had not taken a sign language class, worked with or lived with a deaf person were considered for the unfamiliar category of the study. Nine participants were selected for each group totaling 27 participants (one participant from each of the groups withdrew before completion, leaving eight participants from each of the groups to complete the study). To elicit the perspectives of the participants, I developed a Reader Response survey which was modeled after Schwartz’s ‘Criteria for Analyzing Books about Deafness’. I assumed that the participants from Deaf and Familiar groups would prefer the books written by the deaf authors while the unfamiliar participants would act more as a control group. This was not confirmed through the data. In fact, the Deaf participants along with the participants as a whole preferred the books written by the hearing authors as better describing their perceptions of realistic deaf people, for presenting deaf characters adequately and realistically, and for the hearing authors’ portrayals of deaf characters matching with their perceptions of deaf people. In general, the Deaf participants were more critical of the deaf authors while the familiar participants, although as a group preferred the books by the hearing authors, were more critical of the hearing authors. Participants throughout all three groups mentioned their preference for a spectrum of deaf characters. The books used in this study that were written by hearing authors included a variety of characters. For example, Riskind’s Apple Is My Sign includes numerous deaf students at a school for the deaf and the main character living within a deaf family; Deaver’s A Maiden’s Grave includes deaf characters from a variety of backgrounds attending a residential school for the deaf and only a few hearing characters; and Ferris’ Of Sound Mind includes two deaf families with two CODA or hearing teens. The books written by the deaf authors in this study include only a few deaf characters. For example, Matlin’s Deaf Child Crossing includes two deaf girls surrounded by hearing characters; Scott’s Finding Abby includes more minor deaf characters but readers learn about these characters from the hearing character’s perspective. For instance, the character Jared uses sign language and attends a residential school for the deaf but readers learn this information from his hearing mother talking about him, not from the deaf character’s words. Readers know that he communicates through sign language because we are told that he does; however, the only communication readers are shown is a wave from the child; and, Blatchford’s Nick’s Secret includes only one deaf character. With the fewer deaf characters it is nearly impossible for the various ways of being deaf to be included in the book. Thus, the preference for the books by the hearing authors is more likely connected to the preference for a variety of deaf people represented. How do readers perceive deaf characters? Participants commented on fourteen main and secondary characters. Their perceptions of these characters fall into six categories: the “normal” curious kid such as the characters Harry (Apple Is My Sign), Jeremy (Of Sound Mind) and Jared (Finding Abby); the egocentric spoiled brat such as Palma (Of Sound Mind) and Megan (Deaf Child Crossing); the advocate such as Harry’s mother (Apple Is My Sign) and Susan (A Maiden’s Grave); those dependent upon the majority culture such as Palma (Of Sound Mind) and Lizzie (Deaf Child Crossing); those isolated such as Melissa (Finding Abby), Ben (Of Sound Mind), Nick (Nick’s Secret) and Thomas (Of Sound Mind); and, those searching for their identities such as Melanie (A Maiden’s Grave) and Abby (Finding Abby). Overall, participants commented more frequently about the deaf characters in the books by the hearing authors (A Maiden’s Grave; Of Sound Mind; Apple Is My Sign) and made more positive comments about the culturally Deaf male characters, particularly Ben Roper, Jeremy and Thomas of Of Sound Mind, and Harry of Apple Is My Sign. Themes such as the characters being dependent and isolated from others did arise. For example, Palma in Of Sound Mind insists that her hearing son act as her personal interpreter so that she can avoid other hearing people. Examples to demonstrate the isolation some of the deaf characters experience include Nick of Nick’s Secret being the only deaf character in his story and Ben Roper of Of Sound Mind being the only deaf employee in his workplace. While these can certainly be read as negative situations the characters experience, isolation is a reality that resonates in some deaf people’s experiences. With communicative technology and more individuals fluent in American Sign Language, some deaf individuals may decide to associate more with individuals in the larger culture. One must interpret purposeful isolation such as Ben Roper’s (Of Sound Mind) case, working in a location that provides him with the best employment opportunities, differently than Melissa Black’s (Finding Abby) isolating feelings of being left out of family dinner discussions. Similarly, variations in characterization including the egocentric, spoiled brat and those searching for their identities are common themes in adolescent literature with or without deaf characters being included. Positive examples of deaf characters including the roles of the advocate such as Susan (A Maiden’s Grave) and Harry’s mother (Apple Is My Sign), along with descriptions of regular everyday deaf kids increases the varieties of deaf characters. As previously stated, my study included an analysis based on literary theory and prior research. At that time, unless the author explicitly told readers in a foreword or a letter to readers, I had no way of truly knowing why the deaf character was included and why the author made such decisions. This uncertainty of the author’s decisions changed for me in 2007 with the establishment of my educational blog. Beginning to Blog When I started my educational blog Deaf Characters in Adolescent Literature in February 2007, I did not plan to become a blogger nor did I have any plans for my blog. I simply opened a Blogger account and added a list of 106 books with deaf characters that was connected to my research. Once I started blogging on a regular basis, I discovered an active audience who not only read what I wrote but who truly cared about my research. Blogging had become a way for me to keep my research current; since my blog was about deaf characters in adolescent literature, it became an advocacy tool that called attention to authors and books that were not widely publicized; and, it enabled me to become part of a cyber community made up of other bloggers and readers. After a few months of blogging on a weekly basis, I began to feel a sense of obligation to research and post my findings. While continuing to post to my blog, I have acquired more information about my research topic and even received advance reader copies prior to the books’ publication dates. This enables me to discuss the most current books. It also enables my readers to learn about such books. My blog acts as free advertisement for the publishing companies and authors. I currently have 195 contemporary books with deaf characters and over 36 author and professional interviews. While the most rewarding aspect of blogging is connecting with readers, there have been some major highlights in the process. As I stated, I had no way of knowing why the deaf character was included in the books until I began interviewing the authors. I had hoped that the hearing authors of books with deaf characters would portray their characters realistically but I had not realized the authors’ personal connections to actual deaf people. For instance, Delia Ray, Singing Hands, wrote about a Deaf preacher and his family. Her book was based on her grandfather who was a Deaf preacher and leading pioneer in the Deaf Community. Ray is not the only hearing author who has a personal connection to deaf people. Other examples include: Jean Ferris, Of Sound Mind, who earned a degree in Speech Pathology and Audiology. Ferris’ book includes only two hearing characters, the majority are Deaf. All of her characters are also fluent in American Sign Language; Jodi Cutler Del Dottore, Rally Caps, who includes a deaf character named Luca who uses a cochlear implant. Luca is based on Cutler Del Dottore’s son, Jordan, who also has a cochlear implant; finally, Jacqueline Woodson, Feathers, grew up in a community that included deaf people who did not use sign language. As an adult, she met members of the Deaf Community and began learning American Sign Language herself. Woodson introduces readers to Sean who is attractive, funny, and intelligent. In my study, I noted that all of the deaf characters where not diverse based upon race, ethnicity, and socio-economic status (Pajka-West, "Perceptions"). Sean is the first Deaf American-African character in adolescent literature who uses sign language to communicate. Another main highlight is finding Deaf authors who do not receive the mainstream press that other authors might receive. For example, Ann Clare LeZotte, T4, introduces readers to main character Paula Becker, a thirteen year old deaf girl who uses sign language and lipreading to communicate. Through verse, we learn of Paula’s life in Germany during Hitler’s time as she goes into hiding since individuals with physical and mental disabilities were being executed under the orders of Hitler’s Tiergartenstrasse 4 (T4). One additional highlight is that I learn about insider tips and am then able to share this information with my blog readers. In one instance I began corresponding with Marvel Comic’s David Mack, the creator of Echo, a multilingual, biracial, Deaf comic book character who debuted in Daredevil and later The New Avengers. In comics, it is Marvel who owns the character; while Echo was created for Daredevil by Mack, she later appears in The New Avengers. In March 2008, discussion boards were buzzing since issue #39 would include original creator, Mack, among other artists. To make it less complicated for those who do not follow comics, the issue was about whether or not Echo had become a skrull, an alien who takes over the body of the character. This was frightening news since potentially Echo could become a hearing skrull. I just did not believe that Mack would let that happen. My students and I held numerous discussions about the implications of Marvel’s decisions and finally I sent Mack an email. While he could not reveal the details of the issue, he did assure me that my students and I would be pleased. I’m sure there was a collective sigh from readers once his email was published on the blog. Final Thoughts While there have been pejorative depictions of the deaf in literature, the portrayals of deaf characters in adolescent literature have become much more realistic in the last decade. Authors have personal connections with actual deaf individuals which lend to the descriptions of their deaf characters; they are conducting more detailed research to develop their deaf characters; and, they appear to be much more aware of the Deaf Community than they were in the past. A unique benefit of the genre is that authors of adolescent literature often give the impression of being more available to the readers of their books. Authors often participate in open dialogues with their fans through social networking sites or discussion boards on their own websites. After posting interviews with the authors on my blog, I refer readers to the author’s on site whether it through personal blogs, websites, Facebook or Twitter pages. While hearing authors’ portrayals now include a spectrum of deaf characters, we must encourage Deaf and Hard of Hearing writers to include more deaf characters in their works. Consider again my student Carla and her longing to find books with deaf characters. Deaf characters in fiction act as role models for young adults. A positive portrayal of deaf characters benefits deaf adolescents whether or not they see themselves as biologically deaf or culturally deaf. Only through on-going publishing, more realistic and positive representations of the deaf will occur. References Bailes, C.N. "Mandy: A Critical Look at the Portrayal of a Deaf Character in Children’s Literature." Multicultural Perspectives 4.4 (2002): 3-9. Batson, T. "The Deaf Person in Fiction: From Sainthood to Rorschach Blot." Interracial Books for Children Bulletin 11.1-2 (1980): 16-18. Batson, T., and E. Bergman. Angels and Outcasts: An Anthology of Deaf Characters in Literature. Washington, D.C.: Gallaudet University Press (1985). Bergman, E. "Literature, Fictional characters in." In J.V. Van Cleve (ed.), Gallaudet Encyclopedia of Deaf People & Deafness. Vol. 2. Washington, D.C.: McGraw Hill, 1987. 172-176. Brittain, I. "An Examination into the Portrayal of Deaf Characters and Deaf Issues in Picture Books for Children." Disability Studies Quarterly 24.1 (Winter 2004). 24 Apr. 2005 < http://www.dsq-sds.org >. Burns, D.J. An Annotated Checklist of Fictional Works Which Contain Deaf Characters. Unpublished master’s thesis. Washington, D.C.: Gallaudet University,1950. Campbell, P., and J. Wirtenberg. How Books Influence Children: What the Research Shows. Interracial Books for Children Bulletin 11.6 (1980): 3-6. Civiletto, C.L., and B.R. Schirmer. "Literature with Characters Who Are Deaf." The Dragon Lode 19.1 (Fall 2000): 46-49. Guella, B. "Short Stories with Deaf Fictional Characters." American Annals of the Deaf 128.1 (1983): 25-33. Krentz, C. "Exploring the 'Hearing Line': Deafness, Laughter, and Mark Twain." In S. L. Snyder, B. J. Brueggemann, and R. Garland-Thomson, eds., Disability Studies: Enabling the Humanities. New York: Modern Language Association of America, 2002. 234-247. Larrick, N. "The All-White World of Children's Books. Saturday Review 11 (1965): 63-85. Pajka-West, S. “The Perceptions of Deaf Characters in Adolescent Literature”. The ALAN Review 34.3 (Summer 2007): 39-45. ———. "The Portrayals and Perceptions of Deaf Characters in Adolescent Literature." Ph.D. dissertation. University of Virginia, 2007. ———. "Interview with Deaf Author Ann Clare LeZotte about T4, Her Forthcoming Book Told in Verse." Deaf Characters in Adolescent Literature, 5 Aug. 2008. < http://pajka.blogspot.com/ 2008/08/interview-with-deaf-author-ann-clare.html >.———. "Interview with Delia Ray, Author of Singing Hands." Deaf Characters in Adolescent Literature, 23 Aug. 2007. < http://pajka.blogspot.com/ 2007/08/interview-with-delia-ray-author-of.html >.———. "Interview with Jacqueline Woodson, author of Feathers." Deaf Characters in Adolescent Literature, 29 Sep. 2007. < http://pajka.blogspot.com/ 2007/09/interview-with-jacqueline-woodson.html >. ———. "Interview with Jodi Cutler Del Dottore, author of Rally Caps." Deaf Characters in Adolescent Literature, 13 Aug. 2007. < http://pajka.blogspot.com/ 2007/08/interview-with-jodi-cutler-del-dottore.html >. Panara, R. "Deaf Characters in Fiction and Drama." The Deaf American 24.5 (1972): 3-8. Schwartz, A.V. "Books Mirror Society: A Study of Children’s Materials." Interracial Books for Children Bulletin 11.1-2 (1980): 19-24. Sherriff, A. The Portrayal of Mexican American Females in Realistic Picture Books (1998-2004). University of North Carolina, Chapel Hill: 2005. Taxel, J. "The Black Experience in Children's Fiction: Controversies Surrounding Award Winning Books." Curriculum Inquiry 16 (1986): 245-281. Taylor, G.M. "Deaf Characters in Short Stories: A Selective Bibliography. The Deaf American 26.9 (1974): 6-8. ———. "Deaf Characters in Short Stories: A Selective Bibliography II." The Deaf American 28.11 (1976): 13-16.———. "Deaf Characters in Short Stories: A Selective Bibliography III." The Deaf American 29.2 (1976): 27-28. Wilding-Diaz, M.M. Deaf Characters in Children’s Books: How Are They Portrayed? Unpublished master’s thesis. Provo, Utah: Brigham Young University, 1993.———. "Deaf Characters in Children’s Books: How Are They Perceived?" In Gallaudet University College for Continuing Education and B.D. Snider (eds.), Journal: Post Milan ASL & English Literacy: Issues, Trends & Research Conference Proceedings, 20-22 Oct. 1993.Adolescent Fiction Books Blatchford, C. Nick’s Secret. Minneapolis, MN: Lerner, 2000. Deaver, J. A Maiden’s Grave. New York: Signet, 1996. Ferris, J. Of Sound Mind. New York: Sunburst, 2004. Matlin, M. Deaf Child Crossing. New York: Aladdin Paperbacks, 2004. Riskind, M. Apple Is My Sign. Boston, MA: Houghton Mifflin, 1981. Scott, V. Finding Abby. Hillsboro, OR: Butte, 2000.

Photo by Sean Pollock on Unsplash ABSTRACT Bioethics and Corporate Social Responsibility (CSR) were born out of similar concerns, such as the reaction to scandal and the restraint of irresponsible actions by individuals and organizations. However, these fields of knowledge are seldom explored together. This article attempts to explain the motives behind the gap between bioethics and CSR, while arguing that their shared agenda – combined with their contrasting principles and goals – suggests there is potential for fruitful dialogue that enables the actualization of bioethical agendas and provides a direction for CSR in health-related organizations. INTRODUCTION Bioethics and Corporate Social Responsibility (CSR) seem to be cut from the same cloth: the concern for human rights and the response to scandal. Both are tools for the governance of organizations, shaping how power flows and decisions are made. They have taken the shape of specialized committees, means of stakeholder inclusion at deliberative forums, compliance programs, and internal processes. It should be surprising, then, that these two fields of study and practice have developed separately, only recently re-approaching one another. There have been displays of this reconnection both in academic and corporate spaces, with bioethics surfacing as part of the discourse of CSR and compliance initiatives. However, this is still a relatively timid effort. Even though the bioethics-CSR divide presents mostly reasonable explanations for this difficult relationship between the disciplines, current proposals suggest there is much to be gained from a stronger relationship between them. This article explores the common history of bioethics and corporate social responsibility and identifies their common features and differences. It then explores the dispute of jurisdictions due to professional and academic “pedigree” and incompatibilities in the ideological and teleological spheres as possible causes for the divide. The discussion turns to paths for improving the reflexivity of both disciplines and, therefore, their openness to mutual contributions. I. Cut Out of the Same Cloth The earliest record of the word “bioethics” dates back to 1927 as a term that designates one’s ethical responsibility toward not only human beings but other lifeforms as well, such as animals and plants.[1] Based on Kantian ethics, the term was coined as a response to the great prestige science held at its time. It remained largely forgotten until the 1970s, when it resurfaced in the United States[2] as the body of knowledge that can be employed to ensure the responsible pursuit and application of science. The resurgence was prompted by a response to widespread irresponsible attitudes toward science and grounded in a pluralistic perspective of morality.[3] In the second half of the twentieth century, states and the international community assumed the duty to protect human rights, and bioethics became a venue for discussing rights.[4] There is both a semantic gap and a contextual gap between these two iterations, with some of them already being established. Corporate social responsibility is often attributed to the Berle-Dodd debate. The discussion was characterized by diverging views on the extent of the responsibility of managers.[5] It was later settled as positioning the company, especially the large firm, as an entity whose existence is fomented by the law due to its service to the community. The concept has evolved with time, departing from a largely philanthropic meaning to being ingrained in nearly every aspect of a company’s operations. This includes investments, entrepreneurship models, and its relationship to stakeholders, leading to an increasing operationalization and globalization of the concept.[6] At first sight, these two movements seem to stem from different contexts. Despite the difference, it is also possible to tell a joint history of bioethics and CSR, with their point of contact being a generalized concern with technological and social changes that surfaced in the sixties. The publishing of Silent Spring in 1962 by Rachel Carson exemplifies this growing concern over the sustainability of the ruling economic growth model of its time by commenting on the effects of large-scale agriculture and the use of pesticides in the population of bees, one of the most relevant pollinators of crops consumed by humans. The book influenced both the author responsible for the coining bioethics in the 1971[7] and early CSR literature.[8] By initiating a debate over the sustainability of economic models, the environmentalist discourse became a precursor to vigorous social movements for civil rights. Bioethics was part of the trend as it would be carried forward by movements such as feminism and the patients’ rights movement.[9] Bioethics would gradually move from a public discourse centered around the responsible use of science and technology to academic and government spaces.[10] This evolution led to an increasing emphasis on intellectual rigor and governance. The transformation would unravel the effort to take effective action against scandal and turn bioethical discourse into governance practices,[11] such as bioethics and research ethics committees. The publication of the Belmont Report[12] in the aftermath of the Tuskegee Syphilis Experiment, as well as the creation of committees such as the “God Committee,”[13] which aimed to develop and enforce criteria for allocating scarce dialysis machines, exemplify this shift. On the side of CSR, this period represents, at first, a stronger pact between businesses and society due to more stringent environmental and consumer regulations. But afterward, a joint trend emerged: on one side, the deregulation within the context of neoliberalism, and on the other, the operationalization of corporate social responsibility as a response to societal concerns.[14] The 1990s saw both opportunities and crises that derived from globalization. In the political arena, the end of the Cold War led to an impasse in the discourse concerning human rights,[15] which previously had been split between the defense of civil and political rights on one side and social rights on the other. But at the same time, agendas that were previously restricted territorially became institutionalized on a global scale.[16] Events such as the European Environment Agency (1990), ECO92 in Rio de Janeiro (1992), and the UN Global Compact (2000) are some examples of the globalization of CSR. This process of institutionalization would also mirror a crisis in CSR, given that its voluntarist core would be deemed lackluster due to the lack of corporate accountability. The business and human rights movement sought to produce new binding instruments – usually state-based – that could ensure that businesses would comply with their duties to respect human rights.[17] This rule-creation process has been called legalization: a shift from business standards to norms of varying degrees of obligation, precision, and delegation.[18] Bioethics has also experienced its own renewed identity in the developed world, perhaps because of its reconnection to public and global health. Global health has been the object of study for centuries under other labels (e.g., the use of tropical medicine to assist colonial expeditions) but it resurfaced in the political agenda recently after the pandemics of AIDS and respiratory diseases.[19] Bioethics has been accused from the inside of ignoring matters beyond the patient-provider relationship,[20] including those related to public health and/or governance. Meanwhile, scholars claimed the need to expand the discourse to global health.[21] In some countries, bioethics developed a tight relationship with public health, such as Brazil,[22] due to its connections to the sanitary reform movement. The United Kingdom has also followed a different path, prioritizing governance practices and the use of pre-established institutions in a more community-oriented approach.[23] The Universal Declaration on Bioethics and Rights followed this shift toward a social dimension of bioethics despite being subject to criticism due to its human rights-based approach in a field characterized by ethical pluralism.[24] This scenario suggests bioethics and CSR have developed out of similar concerns: the protection of human rights and concerns over responsible development – be it economic, scientific, or technological. However, the interaction between these two fields (as well as business and human rights) is fairly recent both in academic and business settings. There might be a divide between these fields and their practitioners. II. A Tale of Jurisdictions It can be argued that CSR and business and human rights did not face jurisdictional disputes. These fields owe much of their longevity to their roots in institutional economics, whose debates, such as the Berle-Dodd debate, were based on interdisciplinary dialogue and the abandonment of sectorial divisions and public-private dichotomies.[25] There was opposition to this approach to the role of companies in society that could have implications for CSR’s interdisciplinarity, such as the understanding that corporate activities should be restricted to profit maximization.[26] Yet, those were often oppositions to CSR or business and human rights themselves. The birth of bioethics in the USA can be traced back to jurisdictional disputes over the realm of medicine and life sciences.[27] The dispute unfolded between representatives of science and those of “society’s conscience,” whether through bioethics as a form of applied ethics or other areas of knowledge such as theology.[28] Amid the civil rights movements, outsiders would gain access to the social sphere of medicine, simultaneously bringing it to the public debate and emphasizing the decision-making process as the center of the medical practice.[29] This led to the emergence of the bioethicist as a professional whose background in philosophy, theology, or social sciences deemed the bioethicist qualified to speak on behalf of the social consciousness. In other locations this interaction would play out differently: whether as an investigation of philosophically implied issues, a communal effort with professional institutions to enhance decision-making capability, or a concern with access to healthcare.[30] In these situations, the emergence and regulation of bioethics would be way less rooted in disputes over jurisdictions. This contentious birth of bioethics would have several implications, most related to where the bioethicist belongs. After the civil rights movements subsided, bioethics moved from the public sphere into an ivory tower: intellectual, secular, and isolated. The scope of the bioethicist would be increasingly limited to the spaces of academia and hospitals, where it would be narrowed to the clinical environment.[31] This would become the comfort zone of professionals, much to the detriment of social concerns. This scenario was convenient to social groups that sought to affirm their protagonism in the public arena, with conservative and progressive movements alike questioning the legitimacy of bioethics in the political discourse.[32] Even within the walls of hospitals and clinics, bioethics would not be excused from criticism. Afterall, the work of bioethicists is often unregulated and lacks the same kind of accountability that doctors and lawyers have. Then, is there a role to be played by the bioethicist? This trend of isolation leads to a plausible explanation for why bioethics did not develop an extensive collaboration with corporate social responsibility nor with business and human rights. Despite stemming from similar agendas, bioethics’ orientation towards the private sphere resulted in a limited perspective on the broader implications of its decisions. This existential crisis of the discipline led to a re-evaluation of its nature and purpose. Its relevance has been reaffirmed due to the epistemic advantage of philosophy when engaging normative issues. Proper training enables the bioethicist to avoid falling into traps of subjectivism or moralism, which are unable to address the complexity of decision-making. It also prevents the naïve seduction of “scientifying” ethics.[33] This is the starting point of a multitude of roles that can be attributed to the bioethicists. There are three main responsibilities that fall under bioethics: (i) activism in biopolicy, through the engagement in the creation of laws, jurisprudence, and public policies; (ii) the exercise of bioethics expertise, be it through the specialized knowledge in philosophical thought, its ability to juggle multiple languages related to various disciplines related to bioethics, or its capacity to combat and avoid misinformation and epistemic distortion; (iii) and, intellectual exchange, by exercising awareness that it is necessary to work with specialists from different backgrounds to achieve its goals.[34] All of those suggest the need for bioethics to improve its dialogue with CSR and business and human rights. Both CSR and business and human rights have been the arena of political disputes over the role of regulations and corporations themselves, and the absence of strong stances by bioethicists risks deepening their exclusion from the public arena. Furthermore, CSR and business and human rights are at the forefront of contemporary issues, such as the limits to sustainable development and appropriate governance structures, which may lead to the acceptance of values and accomplishment of goals cherished by bioethics. However, a gap in identifying the role and nature of bioethics and CSR may also be an obstacle for bridging the chasm between bioethics and CSR. III. From Substance to Form: Philosophical Groundings of CSR and Bioethics As mentioned earlier, CSR is, to some extent, a byproduct of institutionalism. Institutional economics has a philosophical footprint in the pragmatic tradition[35], which has implications for the purpose of the movement and the typical course of the debate. The effectiveness of regulatory measures is often at the center of CSR and business and human rights debates: whatever the regulatory proposal may be, compliance, feasibility, and effectiveness are the kernel of the discussion. The axiological foundation is often the protection of human rights. But discussions over the prioritization of some human rights over others or the specific characteristics of the community to be protected are often neglected.[36] It is worth reinforcing that adopting human rights as an ethical standard presents problems to bioethics, given its grounding in the recognition of ethical pluralism. Pragmatism adopts an anti-essentialist view, arguing that concepts derive from their practical consequences instead of aprioristic elements.[37] Therefore, truth is transitory and context dependent. Pragmatism embraces a form of moral relativism and may find itself in an impasse in the context of political economy and policymaking due to its tendency to be stuck between the preservation of the status quo and the defense of a technocratic perspective, which sees technical and scientific progress as the solution to many of society’s issues.[38] These characteristics mean that bioethics has a complicated relationship with pragmatism. Indeed, there are connections between pragmatism and the bioethics discourse. Both can be traced back to American naturalism.[39] The early effort in bioethics to make it ecumenical, thus building on a common but transitory morality,[40] sounds pragmatic. Therefore, scholars suggest that bioethics should rely on pragmatism's perks and characteristics to develop solutions to new ethical challenges that emerge from scientific and technological progress. Nonetheless, ethical relativism is a problem for bioethics when it bleeds from a metaethical level into the subject matters themselves. After all, the whole point of bioethics is either descriptive, where it seeks to understand social values and conditions that pertain to its scope, or normative, where it investigates what should be done in matters related to medicine, life sciences, and social and technological change. It is a “knowledge of how to use knowledge.” Therefore, bioethics is a product of disillusionment regarding science and technology's capacity to produce exclusively good consequences. It was built around an opposition to ethical relativism—even though the field is aware of the particularity of its answers. This is true not only for the scholarly arena, where the objective is to produce ethically sound answers but also for bioethics governance, where relativism may induce decision paralysis or open the way to points of view disconnected from facts.[41] But there might be a point for more pragmatic bioethics. Bioethics has become an increasingly public enterprise which seeks political persuasion and impact in the regulatory sphere. When bioethics is seen as an enterprise, achieving social transformation is its main goal. In this sense, pragmatism can provide critical tools to identify idiosyncrasies in regulation that prove change is needed. An example of how this may play out is the abortion rights movement in the global south.[42] Despite barriers to accessing safe abortion, this movement came up with creative solutions and a public discourse focused on the consequences of its criminalization rather than its moral aspects. IV. Bridging the Divide: Connections Between Bioethics and CSR There have been attempts to bring bioethics and CSR closer to each other. Corporate responsibility can be a supplementary strategy for achieving the goals of bioethics. The International Bioethics Committee (IBC), an institution of the United Nations Educational, Scientific and Cultural Organization (UNESCO), highlights the concept that social responsibility regarding health falls under the provisions of the Universal Declaration on Bioethics and Human Rights (UDBHR). It is a means of achieving good health (complete physical, mental, and social well-being) through social development.[43] Thus, it plays out as a condition for actualizing the goals dear to bioethics and general ethical standards,[44] such as autonomy and awareness of the social consequences of an organization’s governance. On this same note, CSR is a complementary resource for healthcare organizations that already have embedded bioethics into their operations[45] as a way of looking at the social impact of their practices. And bioethics is also an asset of CSR. Bioethics can inform the necessary conditions for healthcare institutions achieving a positive social impact. When taken at face value, bioethics may offer guidelines for ethical and socially responsible behavior in the industry, instructing how these should play out in a particular context such as in research, and access to health.[46] When considering the relevance of rewarding mechanisms,[47] bioethics can guide the establishment of certification measures to restore lost trust in the pharmaceutical sector.[48] Furthermore, recognizing that the choice is a more complex matter than the maximization of utility can offer a nuanced perspective on how organizations dealing with existentially relevant choices understand their stakeholders.[49] However, all of those proposals might come with the challenge of proving that something can be gained from its addition to self-regulatory practices[50] within the scope of a dominant rights-based approach to CSR and global and corporate law. It is evident that there is room for further collaboration between bioethics and CSR. Embedding either into the corporate governance practices of an organization tends to be connected to promoting the other.[51] While there are some incompatibilities, organizations should try to overcome them and take advantage of the synergies and similarities. CONCLUSION Despite their common interests and shared history, bioethics and corporate social responsibility have not produced a mature exchange. Jurisdictional issues and foundational incompatibilities have prevented a joint effort to establish a model of social responsibility that addresses issues particular to the healthcare sector. Both bioethics and CSR should acknowledge that they hold two different pieces of a cognitive competence necessary for that task: CSR offers experience on how to turn corporate ethical obligations operational, while bioethics provides access to the prevailing practical and philosophical problem-solving tools in healthcare that were born out of social movements. Reconciling bioethics and CSR calls for greater efforts to comprehend and incorporate the social knowledge developed by each field reflexively[52] while understanding their insights are relevant to achieving some common goals. - [1]. Fritz Jahr, “Bio-Ethik: Eine Umschau Über Die Ethischen Beziehungen Des Menschen Zu Tier Und Pflanze,” Kosmos - Handweiser Für Naturfreunde 24 (1927): 2–4. [2]. Van Rensselaer Potter, “Bioethics, the Science of Survival,” Perspectives in Biology and Medicine 14, no. 1 (1970): 127–53, https://doi.org/10.1353/pbm.1970.0015. [3]. Maximilian Schochow and Jonas Grygier, eds., “Tagungsbericht: 1927 – Die Geburt der Bioethik in Halle (Saale) durch den protestantischen Theologen Fritz Jahr (1895-1953),” Jahrbuch für Recht und Ethik / Annual Review of Law and Ethics 21 (June 11, 2014): 325–29, https://doi.org/10.3726/978-3-653-02807-2. [4] George J. Annas, American Bioethics: Crossing Human Rights and Health Law Boundaries (Oxford ; New York: Oxford University Press, 2005). [5] Philip L. Cochran, “The Evolution of Corporate Social Responsibility,” Business Horizons 50, no. 6 (November 2007): 449–54, https://doi.org/10.1016/j.bushor.2007.06.004. p. 449. [6] Mauricio Andrés Latapí Agudelo, Lára Jóhannsdóttir, and Brynhildur Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility,” International Journal of Corporate Social Responsibility 4, no. 1 (December 2019): 23, https://doi.org/10.1186/s40991-018-0039-y. [7] Potter, “Bioethics, the Science of Survival.” p. 129. [8] Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.” p. 4. [9] Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 2003). p. 368-371. [10] Jonsen. p. 372. [11] Jonathan Montgomery, “Bioethics as a Governance Practice,” Health Care Analysis 24, no. 1 (March 2016): 3–23, https://doi.org/10.1007/s10728-015-0310-2. [12]. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, “The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research” (Washington: Department of Health, Education, and Welfare, April 18, 1979), https://www.hhs.gov/ohrp/sites/default/files/the-belmont-report-508c_FINAL.pdf. [13] Shana Alexander, “They Decide Who Lives, Who Dies,” in LIFE, by Time Inc, 19th ed., vol. 53 (Nova Iorque: Time Inc, 1962), 102–25. [14]. Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.” [15]. Boaventura de Sousa Santos, “Por Uma Concepção Multicultural Dos Direitos Humanos,” Revista Crítica de Ciências Sociais, no. 48 (June 1997): 11–32. [16] Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.” [17]. Anita Ramasastry, “Corporate Social Responsibility Versus Business and Human Rights: Bridging the Gap Between Responsibility and Accountability,” Journal of Human Rights 14, no. 2 (April 3, 2015): 237–59, https://doi.org/10.1080/14754835.2015.1037953. [18]. Kenneth W Abbott et al., “The Concept of Legalization,” International Organization, Legalization and World Politics, 54, no. 3 (2000): 401–4019. [19]. Jens Holst, “Global Health – Emergence, Hegemonic Trends and Biomedical Reductionism,” Globalization and Health 16, no. 1 (December 2020): 42–52, https://doi.org/10.1186/s12992-020-00573-4. [20]. Albert R. Jonsen, “Social Responsibilities of Bioethics,” Journal of Urban Health: Bulletin of the New York Academy of Medicine 78, no. 1 (March 1, 2001): 21–28, https://doi.org/10.1093/jurban/78.1.21. [21]. Solomon R Benatar, Abdallah S Daar, and Peter A Singer, “Global Health Challenges: The Need for an Expanded Discourse on Bioethics,” PLoS Medicine 2, no. 7 (July 26, 2005): e143, https://doi.org/10.1371/journal.pmed.0020143. [22]. Márcio Fabri dos Anjos and José Eduardo de Siqueira, eds., Bioética No Brasil: Tendências e Perspectivas, 1st ed., Bio & Ética (São Paulo: Sociedade Brasileira de Bioética, 2007). [23]. Montgomery, “Bioethics as a Governance Practice.” p. 8-9. [24]. Aline Albuquerque S. de Oliveira, “A Declaração Universal Sobre Bioética e Direitos Humanos e a Análise de Sua Repercussão Teórica Na Comunidade Bioética,” Revista Redbioética/UNESCO 1, no. 1 (2010): 124–39. [25] John R. Commons, “Law and Economics,” The Yale Law Journal 34, no. 4 (February 1925): 371, https://doi.org/10.2307/788562; Robert L. Hale, “Bargaining, Duress, and Economic Liberty,” Columbia Law Review 43, no. 5 (July 1943): 603–28, https://doi.org/10.2307/1117229; Karl N. Llewellyn, “The Effect of Legal Institutions Upon Economics,” The American Economic Review 15, no. 4 (1925): 665–83; Carlos Portugal Gouvêa, Análise Dos Custos Da Desigualdade: Efeitos Institucionais Do Círculo Vicioso de Desigualdade e Corrupção, 1st ed. (São Paulo: Quartier Latin, 2021). p. 84-94. [26] Milton Friedman, “A Friedman Doctrine‐- The Social Responsibility of Business Is to Increase Its Profits,” The New York Times, September 13, 1970, sec. Archives, https://www.nytimes.com/1970/09/13/archives/a-friedman-doctrine-the-social-responsibility-of-business-is-to.html. [27] Montgomery, “Bioethics as a Governance Practice.” p. 8. [28] John Hyde Evans, The History and Future of Bioethics: A Sociological View, 1st ed. (New York: Oxford University Press, 2012). [29] David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making, 2nd pbk. ed, Social Institutions and Social Change (New York: Aldine de Gruyter, 2003). p. 3. [30] Volnei Garrafa, Thiago Rocha Da Cunha, and Camilo Manchola, “Access to Healthcare: A Central Question within Brazilian Bioethics,” Cambridge Quarterly of Healthcare Ethics 27, no. 3 (July 2018): 431–39, https://doi.org/10.1017/S0963180117000810. [31] Jonsen, “Social Responsibilities of Bioethics.” [32] Evans, The History and Future of Bioethics. p. 75-79, 94-96. [33] Julian Savulescu, “Bioethics: Why Philosophy Is Essential for Progress,” Journal of Medical Ethics 41, no. 1 (January 2015): 28–33, https://doi.org/10.1136/medethics-2014-102284. [34] Silvia Camporesi and Giulia Cavaliere, “Can Bioethics Be an Honest Way of Making a Living? A Reflection on Normativity, Governance and Expertise,” Journal of Medical Ethics 47, no. 3 (March 2021): 159–63, https://doi.org/10.1136/medethics-2019-105954; Jackie Leach Scully, “The Responsibilities of the Engaged Bioethicist: Scholar, Advocate, Activist,” Bioethics 33, no. 8 (October 2019): 872–80, https://doi.org/10.1111/bioe.12659. [35] Philip Mirowski, “The Philosophical Bases of Institutionalist Economics,” Journal of Economic Issues, Evolutionary Economics I: Foundations of Institutional Thought, 21, no. 3 (September 1987): 1001–38. [36] David Kennedy, “The International Human Rights Movement: Part of the Problem?,” Harvard Human Rights Journal 15 (2002): 101–25. [37] Richard Rorty, “Pragmatism, Relativism, and Irrationalism,” Proceedings and Addresses of the American Philosophical Association 53, no. 6 (August 1980): 717+719-738. [38]. Mirowski, “The Philosophical Bases of Institutionalist Economics.” [39]. Glenn McGee, ed., Pragmatic Bioethics, 2nd ed, Basic Bioethics (Cambridge, Mass: MIT Press, 2003). [40]. Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 7th ed (New York: Oxford University Press, 2013). [41]. Montgomery, “Bioethics as a Governance Practice.” [42]. Debora Diniz and Giselle Carino, “What Can Be Learned from the Global South on Abortion and How We Can Learn?,” Developing World Bioethics 23, no. 1 (March 2023): 3–4, https://doi.org/10.1111/dewb.12385. [43]. International Bioethics Committee, On Social Responsibility and Health Report (Paris: Unesco, 2010). [44]. Cristina Brandão et al., “Social Responsibility: A New Paradigm of Hospital Governance?,” Health Care Analysis 21, no. 4 (December 2013): 390–402, https://doi.org/10.1007/s10728-012-0206-3. [45] Intissar Haddiya, Taha Janfi, and Mohamed Guedira, “Application of the Concepts of Social Responsibility, Sustainability, and Ethics to Healthcare Organizations,” Risk Management and Healthcare Policy Volume 13 (August 2020): 1029–33, https://doi.org/10.2147/RMHP.S258984. [46]The Biopharmaceutical Bioethics Working Group et al., “Considerations for Applying Bioethics Norms to a Biopharmaceutical Industry Setting,” BMC Medical Ethics 22, no. 1 (December 2021): 31–41, https://doi.org/10.1186/s12910-021-00600-y. [47] Anne Van Aaken and Betül Simsek, “Rewarding in International Law,” American Journal of International Law 115, no. 2 (April 2021): 195–241, https://doi.org/10.1017/ajil.2021.2. [48] Jennifer E. Miller, “Bioethical Accreditation or Rating Needed to Restore Trust in Pharma,” Nature Medicine 19, no. 3 (March 2013): 261–261, https://doi.org/10.1038/nm0313-261. [49] John Hardwig, “The Stockholder – A Lesson for Business Ethics from Bioethics?,” Journal of Business Ethics 91, no. 3 (February 2010): 329–41, https://doi.org/10.1007/s10551-009-0086-0. [50] Stefan van Uden, “Taking up Bioethical Responsibility?: The Role of Global Bioethics in the Social Responsibility of Pharmaceutical Corporations Operating in Developing Countries” (Mestrado, Coimbra, Coimbra University, 2012). [51] María Peana Chivite and Sara Gallardo, “La bioética en la empresa: el caso particular de la Responsabilidad Social Corporativa,” Revista Internacional de Organizaciones, no. 13 (January 12, 2015): 55–81, https://doi.org/10.17345/rio13.55-81. [52] Teubner argues that social spheres tend to develop solutions autonomously, but one sphere interfering in the way other spheres govern themselves tends to result in ineffective regulation and demobilization of their autonomous rule-making capabilities. These spheres should develop “reflexion mechanisms” that enable the exchange of their social knowledge and provide effective, non-damaging solutions to social issues. See Gunther Teubner, “Substantive and Reflexive Elements in Modern Law,” Law & Society Review 17, no. 2 (1983): 239–85, https://doi.org/10.2307/3053348.

Photo by Sam McGhee on Unsplash ABSTRACT Medical education has a long history of discriminatory practices. Because of the hierarchy inherent in medical education, underrepresented-in-medicine (URiM) students are particularly vulnerable to discrimination and often feel they have limited recourse to respond without repercussions. URiM student leaders at a USA medical school needed their peers, faculty, and administration to know the institutional racism and other forms of discrimination they regularly experienced. The students wanted to share first-person narratives of their experiences; however, they feared retribution. This paper describes how the medical students partnered with a theater company that applied elements of verbatim theater to anonymously present student narratives and engage their medical school community around issues of racism and discrimination. The post-presentation survey showed the preponderance of respondents increased understanding of URiM student experiences, desired to engage in conversation about inclusion, equity, and diversity, and wanted to make the medical school more inclusive and equitable. Responses from students showed a largely positive effect from sharing stories. First-person narratives can challenge discriminatory practices and generate dialogue surrounding the experiences of URiM medical students. Authors of the first-person narratives may have a sense of empowerment and liberation from sharing their stories. The application of verbatim theater provides students the safety of anonymity, thereby mitigating fears of retribution. INTRODUCTION The field of medicine has a long history of discriminatory practices toward racial and ethnic minorities, women, and members of the LGBTQ+ community.[1] Because of the inherent hierarchy in medical education, medical students are particularly vulnerable to discriminatory practices and may feel they have limited recourse to respond to discrimination.[2] Underrepresented-in-medicine (URiM) students experience “death by a thousand cuts,” often with the perception that they are alone to shoulder and overcome injurious behavior inflicted by peers, faculty, and administrators. l. Social Impetus and Desire for Change Spring 2020 saw the confluence of three social exigencies in the United States: the disproportionate burden of the COVID-19 pandemic on people of color;[3] wide-spread awareness of racist police brutality;[4] and resurgence of demands for equity within medicine by the White Coats for Black Lives organization.[5] URiM student leaders at the Frank H. Netter MD School of Medicine at Quinnipiac University, CT, USA, felt compelled to awaken their medical school community to the bias and discrimination they faced regularly. The URiM student leaders (15 people representing Student National Medical Association, Latinx Medical Student Association, Netter Pride Alliance, Asian Pacific American Medical Student Association, Student Government Association, and White Coats for Black Lives) met regularly with the medical school dean and associate deans to address issues of culture and institutional racism. They needed their peers, faculty, and administration to know that institutional racism and other forms of discrimination were present in the school of medicine, despite vision and mission statements that prioritize equity and inclusion. To that end, in addition to advocating for policy changes, the URiM student leaders wanted to share personal stories from their classmates with the hope that the narratives had the power to instigate change for the better at the school of medicine. They wanted to be heard and seen and to have their perceptions recognized and valued; yet, they could not shake the fear of retribution if they were truly honest about their experiences. Therefore, the students concluded that anonymous storytelling was the safest approach. ll. Foundational Deliberations and Partnership To anonymizing their stories, the students first had to deliberate two foundational features: One: How to account for a plurality of opinions and make decisions? Two: How to speak about their personal experiences and maintain anonymity? The 15 URiM student leaders elected three students (GH, VS, SD) to organize the event and imbued the three organizers with decision-making capacity. The three students, named the Crossroads Organizers, arrived at decisions by consensus. With the aim of maintaining student anonymity, a faculty member (AW) suggested the students investigate using a theater company to present their stories – the premise being that the actors would provide anonymous cover for the students while speaking the students’ words. Having a script comprised exclusively of storytellers’ words is a foundational technique of verbatim theater.[6] The students decided the Crossroads Organizers would meet theater company representatives to seek assurance that their stories would be presented with respect and appropriate representation. Squeaky Wheelz Productions[7] is a theatrical production company specializing in giving voice to the stories of minoritized individuals. lll. Recruit Story Authors The Crossroads Organizers used email and social media platforms such as Facebook, GroupMe, and Instagram to invite medical students to author stories. Authors were given three weeks to submit their stories via an anonymous survey drop on Google Forms, thus assuring that no one, including the Crossroads Organizers, knew the identity of the story authors. lV. Work with the Theater Company The Crossroads Organizers met with the director of the theater company (AMW) multiple times to discuss logistics for the production. The director guided the medical students to refine their goals for the audience and authors (see Theater Company Process) and establish the timeline and task list to arrive at a finished product promptly. Initially, the Crossroads Organizers thought it would be a good idea to have the authors and actors meet to discuss their specific stories and roles. However, after further discussion, they decided that meeting would compromise the anonymity of the student authors and might discourage them from coming forward. Instead, they let the authors know they had the option of meeting their actor. In the Google Forms survey, the Crossroads Organizers provided the opportunity for authors to list specific demographic characteristics of the actor they wanted to portray their story. For example, a Latinx author could choose to have a Latinx actor portray their story. V. Theater Company Process The Squeaky Wheelz actors and director met to discuss how best to use their artistic skills to serve the students’ goals. Given that the collaboration occurred amid the COVID-19 pandemic, there were health, safety, technology, and geography parameters that informed the creative decisions. Actors were recorded individually, and then the footage was edited to create one cohesive piece. Using video meant that in addition to the artistic choices about casting, tone, pacing, and style (which are elements of an in-person event), there were also choices about editing, sound, and mise-en-scéne (“putting in the scene” or what is seen on screen). The Squeaky Wheelz director collaborated with the Crossroads Organizers about the project goals for their audience and colleagues. For example, the theater company encouraged the Crossroads Organizers to consider questions such as: Do they want to tell the viewer what to feel? If a student author identified their race or ethnicity in their story, should casting reflect that as well? Is there anything they would like the audience to know in a disclaimer, or should the stories stand on their own? Consequent to the discussions, the theater company made the decision to not include music or sound (often used in film to dictate emotion), to cast actors of the same race or ethnicity if the author included such identifiers, and to create an introduction for the piece. The introduction stated: “The stories you are about to hear are the true, lived experiences of students in this program, read by actors. Students submitted these words anonymously. We, the actors, ask you to listen.” The Crossroads Organizers expressed their goal was to share the stories authentically and to be clear that these were real experiences, not fictional accounts performed by actors. To serve these goals artistically in the mise-en-scéne, each actor was filmed in front of a plain white wall, in a medium-close-up, and holding a piece of white paper in the bottom corner of the frame from which they read the story. The actors looked straight to the camera for most of their reading, occasionally looking down to the paper to indicate that these words belonged to someone else visually. Actors were directed to “read the words,” not “perform the story” – to communicate the words simply and clearly rather than projecting an assumed emotionality behind the story. This choice was made for two reasons: One, the stories were submitted anonymously, and an assumed emotion may have been inaccurate to the author’s intention; two, without projecting assumed emotionality, the audience has permission to feel and think for themselves in response. All the actors worked independently to prepare for their virtual shoot dates. They also were available if any student authors wanted to meet about their personal stories. [One author chose to meet with their actor.] The final production, comprised of 16 student stories, was entitled Netter Crossroads: A Discourse on Race, Gender, Sexuality, and Class. Vl. Finding the Audience Knowing the unique features and importance of the video as a tool to increase awareness of institutional racism and discrimination within the school community, the Crossroads Organizers aimed to secure as large a viewing audience as possible. To that end, they sought and obtained approval from the dean of the school of medicine to show the video during the Annual State of the School Address, which historically is delivered on the first day of classes and attracts a sizable cross-section of students, faculty, and staff. The Crossroads Organizers asked the dean and associate deans to make event attendance mandatory to engage as many students and faculty as possible in active reflection about discrimination, racial inequality, and social injustice within the medical education community. The deans agreed to make attendance mandatory for first-year medical students and to strongly encourage all other students, faculty, and staff to attend. The Annual State of the School Address is typically an in-person event. Because of the COVID-19 pandemic, all university events had to be hosted virtually on Zoom. The Crossroads Organizers valued the real-time shared experience of viewing the video as a community, so they decided to divide the video into four short segments. The shorter length increased the likelihood that the video’s audio and visual quality was not affected. Between the video segments, the Crossroads Organizers presented national data about underrepresentation in medicine. Vll. Attendee Feedback The 2020 State of the School event had 279 attendees who watched the video, Netter Crossroads: A Discourse on Race, Gender, Sexuality, and Class, in real-time. The audience was comprised of medical students, medical school faculty, staff, and administrators, and university administrators. A four-question Likert-scale survey and open-response field disseminated after the event indicated the vast preponderance of attendees were favorably impressed by the Crossroads video (see Table 1). Approximately 84 percent (67/80) of respondents strongly agreed or agreed with the statement that their understanding of URiM student experiences had increased based on the presentation. Approximately 82 percent (66/80) of respondents strongly agreed or agreed with the statement that the Crossroads presentation effectively conveyed the challenges of URiM students. Seventy percent of respondents (56/80) strongly agreed or agreed with the statement that they were more inclined to engage in conversation about inclusion, equity, and diversity since seeing the Crossroads presentation. Approximately 77 percent (62/80) of respondents strongly agreed or agreed that since seeing the Crossroads presentation, they wanted to learn more about how to help make the medical school more inclusive and equitable. Table 1. Likert-scale survey results after viewing Crossroads video (N=80). The open-response field attracted 24 commentators who largely made favorable comments. Representative favorable comments included: “That was a great presentation. I wish I could hear more from students like that.” “A big thank you to the students who conveyed their stories to the actors – that was a heavy lift.” “Hearing the stories of people at Netter made this presentation hit close to home.” “The Crossroads presentation was outstanding and really opened my eyes to things that I had no idea were happening or that I had never even thought about.” “Definitely we need to hear more of these voices. Very powerful and moving session!” “It was powerful to hear real students’ experiences, played by actors…It communicated to me that Netter is…really committed to improving diversity and inclusion.” Representative unfavorable comments include: “I found this style confrontational instead of conversant/dialogue, and that may have been what the students were going for…but dialogue might have been just as, if not more, effective…” “I fear that welcoming new students virtually to our school by sharing stories of bias, racism, and sexism at our own institution may have left them feeling even more isolated and insecure.” “We need less of these presentations.” Vlll. Student Author Survey After the assembly, the Crossroads Organizers posted announcements on their social media sites inviting the student authors to respond to two queries about their experiences of sharing their stories. Since the student authors were anonymous and unknown to the Crossroads Organizers, they could not directly query the student authors. Instead, the posted announcement asked for open responses to the following questions: a. How did writing and sharing your personal experience at Netter make you feel? b. How did viewing your story portrayed by actors during the state of the school address make you feel? Six of the sixteen student authors put their responses anonymously in a Google Forms survey drop. The authors indicated a range of feelings about writing and sharing their personal experiences. Several authors expressed appreciation for the process and the psychotherapeutic effects. “I feel as though it was an opportunity for my voice to be heard in an anonymous way.” [student author #3] “Empowered to get that frustration out.” [student author #4] “It helped me process some thoughts and emotions that were bothering me subconsciously. I was allowing things like microaggressions affect me without actually addressing the issues.” [student author #6] Others focused on the value of having an audience for their experience. “I feel as though at school, I am never in safe spaces to be able to share my concerns, and that my voice is never heard. I just appreciated being able to vent to someone else about my experiences other than my friends.” [student author #3] “Before this presentation, I had only shared my feelings about being viewed as a minority at school privately with my close friends. Hearing someone else’s stories normalized my feelings of isolation (unfortunately).” [student author #5] Two authors expressed concern about how their stories would be received. “A little worried about the reaction.” [student author #1] “Vulnerable, scared, apprehensive.” [student author #2] The authors also had a range of responses about their experience of seeing their stories portrayed by actors. For some, there was a sense of exuberance and activation. “Really empowered!” [student author #1] “The actors were excellent and really funneled our voices. Viewing both my story and the other students’ [stories] made me realize there is so much work that needs to be done in predominantly white medical schools.” [student author #5] Others conveyed hopefulness. “Heard…like attempts were made to at least take my experience seriously.” [student author #2] Some students experienced conflicting and even negative emotions. “It made me feel sad, but also proud…” [student author #3] “The negative stress racism and discrimination that plays on underrepresented medical students is traumatizing and completely unfair. We are all trying to succeed as future physicians and none of us should carry the burden of feeling targeted based on our skin color or physical features. Viewing the other stories made me feel angry that these micro/macro-aggressions are tolerated every single day.” [student author #5] “It made me feel vulnerable that my experience was on display for the community to see.” [student author #6] And finally, there was mention of the psychodynamic processing that took place from seeing their experiences. “I felt that it was relatively therapeutic.” [student author #3] “It also helped me work through the emotions that I had been suppressing.” [student author #6] CONCLUSION Discriminatory practices often go unnoticed or unmentioned in the medical education setting. Failure to address discriminatory practices leads to isolation, stress, and disempowerment. To mitigate these harms, the medical school curriculum should enable conversations and events about racism and other forms of discrimination. URiM student narratives can aid faculty and student development. After viewing the stories, facilitated conversations could address questions such as the following: a. What could you do to prevent this scenario from ever even occurring? b. Now that it has occurred, how will you support this student? c. What structural changes and/or policies need to be in place for corrective action to be effective? d. If the scenario in the video happened to you, what would you do next? e. Why would you make that choice? f. Alternatively, if you witnessed this happen to a student or faculty member, what would you do? g. Why would you make that choice? h. What are the potential personal and professional consequences of your choice? In alignment with the published literature, our small sample of student author respondents experienced positive therapeutic effects from the process of writing and sharing their stories.[8] At the same time, seeing other authors’ stories of discrimination portrayed by actors ignited anger and sadness for some of our students as they recognized the depth of trauma within the community. Partnership with a theater company provides students the safety of anonymity when telling their stories, thereby allaying their fears of retribution. While some student authors maintained a sense of vulnerability despite the anonymity, they also expressed a sense of empowerment, hopefulness, and pride. Medical educators and administrators must take bold steps to address institutional racism in a meaningful way. Health humanities, including theater, can help the medical education community recognize and overcome the harms imposed on URiM students by institutional racism and other forms of discrimination and awaken capacity for compassionate, respectful, relationship-based education. [1] Hess, Leona, Palermo, Ann-Gel, and David Muller. 2020. “Addressing and Undoing Racism and Bias in the Medical School Learning and Working Environment” Academic Medicine, 95, no. 12 (December): S44-S50. https://pubmed.ncbi.nlm.nih.gov/32889933/ [2] Naif Fnais et al., “Harassment and Discrimination in Medical Training: A Systematic Review and Meta-analysis,” Academic Medicine 89, no. 5 (2014): 817-827, https://doi.org/10.1097/ACM.0000000000000200; Melody P. Chung et al., “Exploring Medical Students’ Barriers to Reporting Mistreatment During Clerkships: A Qualitative Study,” Medical Education Online 23, no. 1 (December 2018): 1478170, https://doi.org/10.1080/10872981.2018.1478170 [3] “Racial Data Transparency,” Coronavirus Resource Center, Johns Hopkins University & Medicine, accessed July 15, 2021, https://coronavirus.jhu.edu/data/racial-data-transparency [4] Radley Balko, “There’s Overwhelming Evidence that the Criminal Justice System is Racist. Here’s the Proof,” Washington Post, June 10, 2020, https://www.washingtonpost.com/graphics/2020/opinions/systemic-racism-police-evidence-criminal-justice-system/. [5] “WC4BL,” White Coats for Black Lives, accessed May 15, 2021, www.whitecoats4blacklives.org. [6] Will Hammond and Dan Steward, eds., Verbatim: Contemporary Documentary Theatre (London: Oberon Books, 2012). [7] “Our Vision,” Squeaky Wheelz Productions, accessed June 30, 2021, www.squeakywheelzproductions.com/. [8] James Pennebaker and Joshua Smyth, Opening Up by Writing It Down: How Expressive Writing Improves Health and Eases Emotional Pain, 3rd ed (New York, London: The Guilford Press, 2016).

Probably the most (in)famous Australian teenager of recent times, now-17-year-old Kim Duthie—better known as the “St Kilda Schoolgirl”—first came to public attention when she posted naked pictures of two prominent St Kilda Australian Football League (AFL) players on Facebook. She claimed to be seeking revenge on the players’ teammate for getting her pregnant. This turned out to be a lie. Duthie also claimed that 47-year-old football manager Ricky Nixon gave her drugs and had sex with her. She then said this was a lie, then that she lied about lying. That she lied at least twice is clear, and in doing so, she arguably reinforced the pervasive myth that women are prone to lie about rape and sexual abuse. Precisely what occurred, and why Duthie posted the naked photographs will probably never be known. However, it seems clear that Duthie felt herself wronged. Can she therefore be held entirely to blame for the way she went about seeking redress from a group of men with infinitely more power than she—socially, financially and (in terms of the priority given to elite football in Australian society) culturally? The many judgements passed on Duthie’s behaviour in the media highlight the crucial, seldom-discussed issue of how problematic behaviour on the part of women might reinforce patriarchal norms. This is a particularly sensitive issue in the context of a spate of alleged sexual assaults committed by elite Australian footballers over the past decade. Given that representations of alleged rape cases in the media and elsewhere so often position women as blameworthy for their own mistreatment and abuse, the question of whether or not women can and should be held accountable in certain situations is particularly fraught. By exploring media representations of one of these complex scenarios, we consider how the issue of “complicity” might be understood in a rape culture. In doing so, we employ Auschwitz survivor Primo Levi’s highly influential concept of the “grey zone,” which signifies a complex and ambiguous realm that challenges both judgement and representation. Primo Levi’s “Grey Zone,” Patriarchy and the Problem of Judgement In his essay titled “The Grey Zone” (published in 1986), Levi is chiefly concerned with Jewish prisoners in the Nazi-controlled camps and ghettos who obtained “privileged” positions in order to prolong their survival. Reflecting on the inherently complex power relations in such extreme settings, Levi positions the “grey zone” as a metaphor for moral ambiguity: a realm with “ill-defined outlines which both separate and join the two camps of masters and servants. [The ‘grey zone’] possesses an incredibly complicated internal structure, and contains within itself enough to confuse our need to judge” (27). According to Levi, an examination of the scenarios and experiences that gave rise to the “grey zone” requires a rejection of the black-and-white binary opposition(s) of “friend” and “enemy,” “good” and “evil.” While Levi unequivocally holds the perpetrators of the Holocaust responsible for their actions, he warns that one should suspend judgement of victims who were entrapped in situations of moral ambiguity and “compromise.” However, recent scholarship on the representation of “privileged” Jews in Levi’s writings and elsewhere has identified a “paradox of judgement”: namely, that even if moral judgements of victims in extreme situations should be suspended, such judgements are inherent in the act of representation, and are therefore inevitable (see Brown). While the historical specificity of Levi’s reflections must be kept in mind, the corruptive influences of power at the core of the “grey zone”—along with the associated problems of judgement and representation—are clearly far more prevalent in human nature and experience than the Holocaust alone. Levi’s “grey zone” has been appropriated by scholars in the fields of Holocaust studies (Petropoulos and Roth xv-xviii), philosophy (Todorov 262), law (Luban 161–76), history (Cole 248–49), theology (Roth 53–54), and popular culture (Cheyette 226–38). Significantly, Claudia Card (The Atrocity Paradigm, “Groping through Gray Zones” 3–26) has recently applied Levi’s concept to the field of feminist philosophy. Indeed, Levi’s questioning of whether or not one can—or should—pass judgement on the behaviour of Holocaust victims has considerable relevance to the divisive issue of how women’s involvement in/with patriarchy is represented in the media. Expanding or intentionally departing from Levi’s ideas, many recent interpretations of the “grey zone” often misunderstand the historical specificity of Levi’s reflections. For instance, while applying Levi’s concept to the effects of patriarchy and domestic violence on women, Lynne Arnault makes the problematic statement that “in order to establish the cruelty and seriousness of male violence against women as women, feminists must demonstrate that the experiences of victims of incest, rape, and battering are comparable to those of war veterans, prisoners of war, political prisoners, and concentration camp inmates” (183, n.9). It is important to stress here that it is not our intention to make direct parallels between the Holocaust and patriarchy, or between “privileged” Jews and women (potentially) implicated in a rape culture, but to explore the complexity of power relations in society, what behaviour eventuates from these, and—most crucial to our discussion here—how such behaviour is handled in the mass media. Aware of the problem of making controversial (and unnecessary) comparisons, Card (“Women, Evil, and Gray Zones” 515) rightly stresses that her aim is “not to compare suffering or even degrees of evil but to note patterns in the moral complexity of choices and judgments of responsibility.” Card uses the notion of the “Stockholm Syndrome,” citing numerous examples of women identifying with their torturers after having been abused or held hostage over a prolonged period of time—most (in)famously, Patricia Hearst. While the medical establishment has responded to cases of women “suffering” from “Stockholm Syndrome” by absolving them from any moral responsibility, Card writes that “we may have a morally gray area in some cases, where there is real danger of becoming complicit in evildoing and where the captive’s responsibility is better described as problematic than as nonexistent” (“Women, Evil, and Gray Zones” 511). Like Levi, Card emphasises that issues of individual agency and moral responsibility are far from clear-cut. At the same time, a full awareness of the oppressive environment—in the context that this paper is concerned with, a patriarchal social system—must be accounted for. Importantly, the examples Card uses differ significantly from the issue of whether or not some women can be considered “complicit” in a rape culture; nevertheless, similar obstacles to understanding problematic situations exist here, too. In the context of a rape culture, can women become, to use Card’s phrase, “instruments of oppression”? And if so, how is their controversial behaviour to be understood and represented? Crucially, Levi’s reflections on the “grey zone” were primarily motivated by his concern that most historical and filmic representations “trivialised” the complexity of victim experiences by passing simplistic judgements. Likewise, the representation of sexual assault cases in the Australian mass media has often left much to be desired. Representing Sexual Assault: Australian Football and the Media A growing literature has critiqued the sexual culture of elite football in Australia—one in which women are reportedly treated with disdain, positioned as objects to be used and discarded. At least 20 distinct cases, involving more than 55 players and staff, have been reported in the media, with the majority of these incidents involving multiple players. Reports indicate that such group sexual encounters are commonplace for footballers, and the women who participate in sexual practices are commonly judged, even in the sports scholarship, as “groupies” and “sluts” who are therefore responsible for anything that happens to them, including rape (Waterhouse-Watson, “Playing Defence” 114–15; “(Un)reasonable Doubt”). When the issue of footballers and sexual assault was first debated in the Australian media in 2004, football insiders from both Australian rules and rugby league told the media of a culture of group sex and sexual behaviour that is degrading to women, even when consensual (Barry; Khadem and Nancarrow 4; Smith 1; Weidler 4). The sexual “culture” is marked by a discourse of abuse and objectification, in which women are cast as “meat” or a “bun.” Group sex is also increasingly referred to as “chop up,” which codes the practice itself as an act of violence. It has been argued elsewhere that footballers treating women as sexual objects is effectively condoned through the mass media (Waterhouse-Watson, “All Women Are Sluts” passim). The “Code of Silence” episode of ABC television program Four Corners, which reignited the debate in 2009, was even more explicit in portraying footballers’ sexual practices as abusive, presenting rape testimony from three women, including “Clare,” who remains traumatised following a “group sex” incident with rugby league players in 2002. Clare testifies that she went to a hotel room with prominent National Rugby League (NRL) players Matthew Johns and Brett Firman. She says that she had sex with Johns and Firman, although the experience was unpleasant and they treated her “like a piece of meat.” Subsequently, a dozen players and staff members from the team then entered the room, uninvited, some through the bathroom window, expecting sex with Clare. Neither Johns nor Firman has denied that this was the case. Clare went to the police five days later, saying that professional rugby players had raped her, although no charges were ever laid. The program further includes psychiatrists’ reports, and statements from the police officer in charge of the case, detailing the severe trauma that Clare suffered as a result of what the footballers called “sex.” If, as “Code of Silence” suggests, footballers’ practices of group sex are abusive, whether the woman consents or not, then it follows that such a “gang-bang culture” may in turn foster a rape culture, in which rape is more likely than in other contexts. And yet, many women insist that they enjoy group sex with footballers (Barry; Drill 86), complicating issues of consent and the degradation of women. Feminist rape scholarship documents the repetitive way in which complainants are deemed to have “invited” or “caused” the rape through their behaviour towards the accused or the way they were dressed: defence lawyers, judges (Larcombe 100; Lees 85; Young 442–65) and even talk show hosts, ostensibly aiming to expose the problem of rape (Alcoff and Gray 261–64), employ these tactics to undermine a victim’s credibility and excuse the accused perpetrator. Nevertheless, although no woman can be in any way held responsible for any man committing sexual assault, or other abuse, it must be acknowledged that women who become in some way implicated in a rape culture also assist in maintaining that culture, highlighting a “grey zone” of moral ambiguity. How, then, should these women, who in some cases even actively promote behaviour that is intrinsic to this culture, be perceived and represented? Charmyne Palavi, who appeared on “Code of Silence,” is a prime example of such a “grey zone” figure. While she stated that she was raped by a prominent footballer, Palavi also described her continuing practice of setting up footballers and women for casual sex through her Facebook page, and pursuing such encounters herself. This raises several problems of judgement and representation, and the issue of women’s sexual freedom. On the one hand, Palavi (and all other women) should be entitled to engage in any consensual (legal) sexual behaviour that they choose. But on the other, when footballers’ frequent casual sex is part of a culture of sexual abuse, there is a danger of them becoming complicit in, to use Card’s term, “evildoing.” Further, when telling her story on “Code of Silence,” Palavi hints that there is an element of increased risk in these situations. When describing her sexual encounters with footballers, which she states are “on her terms,” she begins, “It’s consensual for a start. I’m not drunk or on drugs and it’s in, [it] has an element of class to it. Do you know what I mean?” (emphasis added). If it is necessary to define sex “on her terms” as consensual, this implies that sometimes casual “sex” with footballers is not consensual, or that there is an increased likelihood of rape. She also claims to have heard about several incidents in which footballers she knows sexually abused and denigrated, if not actually raped, other women. Such an awareness of what may happen clearly does not make Palavi a perpetrator of abuse, but neither can her actions (such as “setting up” women with footballers using Facebook) be considered entirely separate. While one may argue, following Levi’s reflections, that judgement of a “grey zone” figure such as Palavi should be suspended, it is significant that Four Corners’s representation of Palavi makes implicit and simplistic moral judgements. The introduction to Palavi follows the story of “Caroline,” who states that first-grade rugby player Dane Tilse broke into her university dormitory room and sexually assaulted her while she slept. Caroline indicates that Tilse left when he “picked up that [she] was really stressed.” Following this story, the program’s reporter and narrator Sarah Ferguson introduces Palavi with, “If some young footballers mistakenly think all women want to have sex with them, Charmyne Palavi is one who doesn’t necessarily discourage the idea.” As has been argued elsewhere (Waterhouse-Watson, “Framing the Victim”), this implies that Palavi is partly responsible for players holding this mistaken view. By implication, she therefore encouraged Tilse to assume that Caroline would want to have sex with him. Footage is then shown of Palavi and her friends “applying the finishing touches”—bronzing their legs—before going to meet footballers at a local hotel. The lighting is dim and the hand-held camerawork rough. These techniques portray the women as artificial and “cheap,” techniques that are also employed in a remarkably similar fashion in the documentary Footy Chicks (Barry), which follows three women who seek out sex with footballers. In response to Ferguson’s question, “What’s the appeal of those boys though?” Palavi repeats several times that she likes footballers mainly because of their bodies. This, along with the program’s focus on the women as instigators of sex, positions Palavi as something of a predator (she was widely referred to as a “cougar” following the program). In judging her “promiscuity” as immoral, the program implies she is partly responsible for her own rape, as well as acts of what can be termed, at the very least, sexual abuse of other women. The problematic representation of Palavi raises the complex question of how her “grey zone” behaviour should be depicted without passing trivialising judgements. This issue is particularly fraught when Four Corners follows the representation of Palavi’s “nightlife” with her accounts of footballers’ acts of sexual assault and abuse, including testimony that a well-known player raped Palavi herself. While Ferguson does not explicitly question the veracity of Palavi’s claim of rape, her portrayal is nevertheless largely unsympathetic, and the way the segment is edited appears to imply that she is blameworthy. Ferguson recounts that Palavi “says she was able to put [being raped] out of her mind, and it certainly didn’t stop her pursuing other football players.” This might be interpreted a positive statement about Palavi’s ability to move on from a rape; however, the tone of Ferguson’s authoritative voiceover is disapproving, which instead implies negative judgement. As the program makes clear, Palavi continues to organise sexual encounters between women and players, despite her knowledge of the “dangers,” both to herself and other women. Palavi’s awareness of the prevalence of incidents of sexual assault or abuse makes her position a problematic one. Yet her controversial role within the sexual culture of elite Australian football is complicated even further by the fact that she herself is disempowered (and her own allegation of being raped delegitimised) by the simplistic ideas about “assault” and “consent” that dominate social discourse. Despite this ambiguity, Four Corners constructs Palavi as more of a perpetrator of abuse than a victim—not even a victim who is “morally compromised.” Although we argue that careful consideration must be given to the issue of whether moral judgements should be applied to “grey zone” figures like Palavi, the “solution” is far from simple. No language (or image) is neutral or value-free, and judgements are inevitable in any act of representation. In his essay on the “grey zone,” Levi raises the crucial point that the many (mis)understandings of figures of moral ambiguity and “compromise” partly arise from the fact that the testimony and perspectives of these figures themselves is often the last to be heard—if at all (50). Nevertheless, an article Palavi published in Sydney tabloid The Daily Telegraph (19) demonstrates that such testimony can also be problematic and only complicate matters further. Palavi’s account begins: If you believed Four Corners, I’m supposed to be the NRL’s biggest groupie, a wannabe WAG who dresses up, heads out to clubs and hunts down players to have sex with… what annoys me about these tags and the way I was portrayed on that show is the idea I prey on them like some of the starstruck women I’ve seen out there. (emphasis added) Palavi clearly rejects the way Four Corners constructed her as a predator; however, rather than rejecting this stereotype outright, she reinscribes it, projecting it onto other “starstruck” women. Throughout her article, Palavi reiterates (other) women’s allegedly predatory behaviour, continually portraying the footballers as passive and the women as active. For example, she claims that players “like being contacted by girls,” whereas “the girls use the information the players put on their [social media profiles] to track them down.” Palavi’s narrative confirms this construction of men as victims of women’s predatory actions, lamenting the sacking of Johns following “Code of Silence” as “disgusting.” In the context of alleged sexual assault, the “predatory woman” stereotype is used in place of the raped woman in order to imply that sexual assault did not occur; hence Palavi’s problematic discourse arguably reinforces sexist attitudes. But can Palavi be considered complicit in validating this damaging stereotype? Can she be blamed for working within patriarchal systems of representation, of which she has also been a victim? The preceding analysis shows judgement to be inherent in the act of representation. The paucity of language is particularly acute when dealing with such extreme situations. Indeed, the language used to explore this issue in the present article cannot escape terminology that is loaded with meaning(s), which quotation marks can perhaps only qualify so far. Conclusion This paper does not claim to provide definitive answers to such complex dilemmas, but rather to highlight problems in addressing the sensitive issues of ambiguity and “complicity” in women’s interactions with patriarchal systems, and how these are represented in the mass media. Like the controversial behaviour of teenager Kim Duthie described earlier, Palavi’s position throws the problems of judgement and representation into disarray. There is no simple solution to these problems, though we do propose that these “grey zone” figures be represented in a self-reflexive, nuanced manner by explicitly articulating questions of responsibility rather than making simplistic judgements that implicitly lessen perpetrators’ culpability. Levi’s concept of the “grey zone” helps elucidate the fraught issue of women’s potential complicity in a rape culture, a subject that challenges both understanding and representation. Despite participating in a culture that promotes the abuse, denigration, and humiliation of women, the roles of women like Palavi cannot in any way be conflated with the roles of the perpetrators of sexual assault. These and other “grey zones” need to be constantly rethought and renegotiated in order to develop a fuller understanding of human behaviour. References Alcoff, Linda Martin, and Laura Gray. “Survivor Discourse: Transgression or Recuperation.” Signs 18.2 (1993): 260–90. Arnault, Lynne S. “Cruelty, Horror, and the Will to Redemption.” Hypatia 18.2 (2003): 155–88. Barry, Rebecca. Footy Chicks. Dir. Rebecca Barry. Australia: SBS Television, off-air recording, 2006. Benedict, Jeff. Public Heroes, Private Felons: Athletes and Crimes against Women. Boston: Northeastern UP, 1997. Benedict, Jeff. Athletes and Acquaintance Rape. Thousand Oaks: SAGE Publications, 1998. Brison, Susan J. Aftermath: Violence and the Remaking of a Self. Princeton: Princeton UP, 2002. Brown, Adam. “Beyond ‘Good’ and ‘Evil’: Breaking Down Binary Oppositions in Holocaust Representations of ‘Privileged’ Jews.” History Compass 8.5 (2010): 407–18. ———. “Confronting ‘Choiceless Choices’ in Holocaust Videotestimonies: Judgement, ‘Privileged’ Jews, and the Role of the Interviewer.” Continuum: Journal of Media and Communication Studies, Special Issue: Interrogating Trauma: Arts & Media Responses to Collective Suffering 24.1 (2010): 79–90. ———. “Marginalising the Marginal in Holocaust Films: Fictional Representations of Jewish Policemen.” Limina: A Journal of Historical and Cultural Studies 15 (2009). 14 Oct. 2011 ‹http://www.limina.arts.uwa.edu.au/previous/vol11to15/vol15/ibpcommended?f=252874›. ———. “‘Privileged’ Jews, Holocaust Representation and the ‘Limits’ of Judgement: The Case of Raul Hilberg.” Ed. Evan Smith. Europe’s Expansions and Contractions: Proceedings of the XVIIth Biennial Conference of the Australasian Association of European Historians (Adelaide, July 2009). Unley: Australian Humanities Press, 2010: 63–86. ———. “The Trauma of ‘Choiceless Choices’: The Paradox of Judgement in Primo Levi’s ‘Grey Zone.’” Trauma, Historicity, Philosophy. Ed. Matthew Sharpe. Newcastle upon Tyne: Cambridge Scholars, 2007: 121–40. ———. “Traumatic Memory and Holocaust Testimony: Passing Judgement in Representations of Chaim Rumkowski.” Colloquy: Text, Theory, Critique, 15 (2008): 128–44. Card, Claudia. The Atrocity Paradigm: A Theory of Evil. New York: Oxford UP, 2002. ———. “Groping through Gray Zones.” On Feminist Ethics and Politics. Ed. Claudia Card. Lawrence: University Press of Kansas, 1999: 3–26. ———. “Women, Evil, and Gray Zones.” Metaphilosophy 31.5 (2000): 509–28. Cheyette, Bryan. “The Uncertain Certainty of Schindler’s List.” Spielberg’s Holocaust: Critical Perspectives on Schindler’s List. Ed. Yosefa Loshitzky. Bloomington: Indiana UP, 1997: 226–38. “Code of Silence.” Four Corners. Australian Broadcasting Corporation (ABC). Australia, 2009. Cole, Tim. Holocaust City: The Making of a Jewish Ghetto. New York: Routledge, 2003. Drill, Stephen. “Footy Groupie: I Am Not Ashamed.” Sunday Herald Sun, 24 May 2009: 86. Gavey, Nicola. Just Sex? The Cultural Scaffolding of Rape. East Sussex: Routledge, 2005. Khadem, Nassim, and Kate Nancarrow. “Doing It for the Sake of Your Mates.” Sunday Age, 21 Mar. 2004: 4. Larcombe, Wendy. Compelling Engagements: Feminism, Rape Law and Romance Fiction. Sydney: Federation Press, 2005. Lees, Sue. Ruling Passions. Buckingham: Open UP, 1997. Levi, Primo. The Drowned and the Saved. Translated by Raymond Rosenthal. London: Michael Joseph, 1986. Luban, David. “A Man Lost in the Gray Zone.” Law and History Review 19.1 (2001): 161–76. Masters, Roy. Bad Boys: AFL, Rugby League, Rugby Union and Soccer. Sydney: Random House Australia, 2006. Palavi, Charmyne. “True Confessions of a Rugby League Groupie.” Daily Telegraph 19 May 2009: 19. Petropoulos, Jonathan, and John K. Roth, eds. Gray Zones: Ambiguity and Compromise in the Holocaust and Its Aftermath. New York: Berghahn, 2005. Roth, John K. “In Response to Hannah Holtschneider.” Fire in the Ashes: God, Evil, and the Holocaust. Eds. David Patterson and John K. Roth. Seattle: U of Washington P, 2005: 50–54. Smith, Wayne. “Gang-Bang Culture Part of Game.” The Australian 6 Mar. 2004: 1. Todorov, Tzvetan. Facing the Extreme: Moral Life in the Concentration Camps. Translated by Arthur Denner and Abigail Pollack. London: Weidenfeld and Nicolson, 1991. Waterhouse-Watson, Deb. “All Women Are Sluts: Australian Rules Football and Representations of the Feminine.” Australian Feminist Law Journal 27 (2007): 155–62. ———. “Framing the Victim: Sexual Assault and Australian Footballers on Television.” Australian Feminist Studies (2011, in press). ———. “Playing Defence in a Sexual Assault ‘Trial by Media’: The Male Footballer’s Imaginary Body.” Australian Feminist Law Journal 30 (2009): 109–29. ———. “(Un)reasonable Doubt: Narrative Immunity for Footballers against Allegations of Sexual Assault.” M/C Journal 14.1 (2011). Weidler, Danny. “Players Reveal Their Side of the Story.” Sun Herald 29 Feb. 2004: 4. Young, Alison. “The Waste Land of the Law, the Wordless Song of the Rape Victim.” Melbourne University Law Review 2 (1998): 442–65.

In the 2019 documentary Chasing Happiness, recording artist/musician Joe Jonas tells audiences that the band was “living the dream”. Similarly, in the 2012 documentary Artifact, lead singer Jared Leto remarks that at the height of Thirty Seconds to Mars’s success, they “were living the dream”. However, for both the Jonas Brothers and Thirty Seconds to Mars, their experiences of the music industry (much like other commercially successful recording artists) soon transformed into nightmares. Similar to other commercially successful recording artists, the Jonas Brothers and Thirty Seconds to Mars, came up against the constraints of the industry which inevitably led to a forfeiting of authenticity, a loss of creative control, increased exploitation, and unequal remuneration. This work will consider how working in the music industry is not always a dream come true and can instead be viewed as a proverbial nightmare. Living the DreamIn his book Dreams, Carl Gustav Jung discusses how that which is experienced in sleep, speaks of a person’s wishes: that which might be desired in reality but may not actually happen. In his earlier work, The Interpretation of Dreams, Freud argued that the dream is representative of fulfilling a repressed wish. However, the creative industries suggest that a dream need not be a repressed wish; it can become a reality. Jon Bon Jovi believes that his success in the music industry has surpassed his wildest dreams (Atkinson). Jennifer Lopez considers the fact that she held big dreams, had a focussed passion, and strong aspirations the reason why she pursued a creative career that took her out of the Bronx (Thomas). In a Twitter post from 23 April 2018, Bruno Mars declared that he “use [sic] to dream of this shit,” in referring to a picture of him performing for a sold out arena, while in 2019 Shawn Mendes informed his 24.4 million Twitter followers that his “life is a dream”. These are but a few examples of successful music industry artists who are seeing their ‘wishes’ come true and living the American Dream.Endemic to the American culture (and a characteristic of the identity of the country) is the “American Dream”. It centres on “a land in which life should be better and richer and fuller for every man, with opportunity for each according to his ability and achievement” (Adams, 404). Although initially used to describe having a nice house, money, stability and a reasonable standard of living, the American Dream has since evolved to what the scholar Florida believes is the new ‘aspiration of people’: doing work that is enjoyable and relies on human creativity. At its core, the original American Dream required striving to meet individual goals, and was promoted as possible for anyone regardless of their cultural, socio-economic and political background (Samuel), because it encourages the celebrating of the self and personal uniqueness (Gamson). Florida’s conceptualisation of the New American dream, however, tends to emphasise obtaining success, fame and fortune in what Neff, Wissinger, and Zukin (310) consider “hot”, “creative” industries where “the jobs are cool”.Whether old or new, the American Dream has perpetuated and reinforced celebrity culture, with many of the young generation reporting that fame and fortune were their priorities, as they sought to emulate the success of their famous role models (Florida). The rag to riches stories of iconic recording artists can inevitably glorify and make appealing the struggle that permits achieving one’s dream, with celebrities offering young, aspiring creative people a means of identification for helping them to aspire to meet their dreams (Florida; Samuel). For example, a young Demi Lovato spoke of how she idolised and looked up to singer Beyonce Knowles, describing Knowles as a role model because of the way she carries herself (Tishgart). Similarly, American Idol winner Kelly Clarkson cited Aretha Franklin as her musical inspiration and the reason that she sings from a place deep within (Nilles). It is unsurprising then, that popular media has tended to portray artists working in the creative industries and being paid to follow their passions as “a much-vaunted career dream” (Duffy and Wissinger, 4656). Movies such as A Star Is Born (2018), The Coal Miner’s Daughter (1980), Dreamgirls (2006), Begin Again (2013) and La La Land (2016) exalt the perception that creativity, talent, sacrifice and determination will mean dreams come true (Nicolaou). In concert with the American dream is the drive among creative people pursuing creative success to achieve their dreams because of the perceived autonomy they will gain, the chance of self-actualisation and social rewards, and the opportunity to fulfil intrinsic motivations (Amabile; Auger and Woodman; Cohen). For these workers, the love of creation and the happiness that accompanies new discoveries (Csikszentmihalyi) can offset the tight budgets and timelines, precarious labour (Blair, Grey, and Randle; Hesmondhalgh and Baker), uncertain demand (Caves; Shultz), sacrifice of personal relationships (Eikhof and Haunschild), the demand for high quality products (Gil & Spiller), and the tense relationships with administrators (Bilton) which are known to plague these industries. In some cases, young, up and coming creative people overlook these pitfalls, instead romanticising creative careers as ideal and worthwhile. They willingly take on roles and cede control to big corporations to “realize their passions [and] uncover their personal talent” (Bill, 50). Of course, as Ursell argues in discussing television employees, such idealisation can mean creatives, especially those who are young and unfamiliar with the constraints of the industry, end up immersed in and victims of the “vampiric” industry that exploits workers (816). They are socialised towards believing, in this case, that the record label is a necessary component to obtain fame and fortune and whether willing or unwilling, creative workers become complicit in their own exploitation (Cohen). Loss of Control and No CompensationThe music industry itself has been considered by some to typify the cultural industries (Chambers). Popular music has potency in that it is perceived as speaking a universal language (Burnett), engaging the emotions and thoughts of listeners, and assisting in their identity construction (Burnett; Gardikiotis and Baltzis). Given the place of music within society, it is not surprising that in 2018, the global music industry was worth US$19.1billion (IFPI). The music industry is necessarily underpinned by a commercial agenda. At present, six major recording companies exist and between them, they own between 70-80 per cent of the recordings produced globally (Konsor). They also act as gatekeepers, setting trends by defining what and who is worth following and listening to (Csikszentmihalyi; Jones, Anand, and Alvarez). In essence, to be successful in the music industry is to be affiliated with a record label. This is because the highly competitive nature and cluttered environment makes it harder to gain traction in the market without worthwhile representation (Moiso and Rockman). In the 2012 documentary about Thirty Seconds to Mars, Artifact, front man Jared Leto even questions whether it is possible to have “success without a label”. The recording company, he determines, “deal with the crappy jobs”. In a financially uncertain industry that makes money from subjective or experience-based goods (Caves), having a label affords an artist access to “economic capital for production and promotion” that enables “wider recognition” of creative work (Scott, 239). With the support of a record label, creative entrepreneurs are given the chance to be promoted and distributed in the creative marketplace (Scott; Shultz). To have a record label, then, is to be perceived as legitimate and credible (Shultz).However, the commercial music industry is just that, commercial. Accordingly, the desire to make money can see the intrinsic desires of musicians forfeited in favour of standardised products and a lack of remuneration for artists (Negus). To see this standardisation in practice, one need not look further than those contestants appearing on shows such as American Idol or The Voice. Nowhere is the standardisation of the music industry more evident than in Holmes’s 2004 article on Pop Idol. Pop Idol first aired in Britain from 2001-2003 and paved the way for a slew of similar shows around the world such as Australia’s Popstars Live in 2004 and the global Idol phenomena. According to Holmes, audiences are divested of the illusion of talent and stardom when they witness the obvious manufacturing of musical talent. The contestants receive training, are dressed according to a prescribed image, and the show emphasises those melodramatic moments that are commercially enticing to audiences. Her sentiments suggest these shows emphasise the artifice of the music industry by undermining artistic authenticity in favour of generating celebrities. The standardisation is typified in the post Idol careers of Kelly Clarkson and Adam Lambert. Kelly Clarkson parted with the recording company RCA when her manager and producer Clive Davis told her that her album My December (2007) was “not commercial enough” and that Clarkson, who had written most of the songs, was a “shitty writer… who should just shut up and sing” (Nied). Adam Lambert left RCA because they wanted him to make a full length 80s album comprised of covers. Lambert commented that, “while there are lots of great songs from that decade, my heart is simply not in doing a covers album” (Lee). In these instances, winning the show and signing contracts led to both Clarkson and Lambert forfeiting a degree of creative control over their work in favour of formulaic songs that ultimately left both artists unsatisfied. The standardisation and lack of remuneration is notable when signing recording artists to 360° contracts. These 360° contracts have become commonplace in the music industry (Gulchardaz, Bach, and Penin) and see both the material and immaterial labour (such as personal identities) of recording artists become controlled by record labels (Stahl and Meier). These labels determine the aesthetics of the musicians as well as where and how frequently they tour. Furthermore, the labels become owners of any intellectual property generated by an artist during the tenure of the contract (Sanders; Stahl and Meier). For example, in their documentary Show Em What You’re Made Of (2015), the Backstreet Boys lament their affiliation with manager Lou Pearlman. Not only did Pearlman manufacture the group in a way that prevented creative exploration by the members (Sanders), but he withheld profits to the point that the Backstreet Boys had to sue Pearlman in order to gain access to money they deserved. In 2002 the members of the Backstreet Boys had stated that “it wasn’t our destinies that we had to worry about in the past, it was our souls” (Sanders, 541). They were not writing their own music, which came across in the documentary Show Em What You’re Made Of when singer Howie Dorough demanded that if they were to collaborate as a group again in 2013, that everything was to be produced, managed and created by the five group members. Such a demand speaks to creative individuals being tied to their work both personally and emotionally (Bain). The angst encountered by music artists also signals the identity dissonance and conflict felt when they are betraying their true or authentic creative selves (Ashforth and Mael; Ashforth and Humphrey). Performing and abiding by the rules and regulations of others led to frustration because the members felt they were “being passed off as something we aren’t” (Sanders 539). The Backstreet Boys were not the only musicians who were intensely controlled and not adequately compensated by Pearlman. In the documentary The Boy Band Con: The Lou Pearlman Story 2019, Lance Bass of N*Sync and recording artist Aaron Carter admitted that the experience of working with Pearlman became a nightmare when they too, were receiving cheques that were so small that Bass describes them as making his heart sink. For these groups, the dream of making music was undone by contracts that stifled creativity and paid a pittance.In a similar vein, Thirty Seconds to Mars sought to cut ties with their record label when they felt that they were not being adequately compensated for their work. In retaliation EMI issued Mars with a US$30 million lawsuit for breach of contract. The tense renegotiations that followed took a toll on the creative drive of the group. At one point in the documentary Artifact (2012), Leto claims “I can’t sing it right now… You couldn’t pay me all the money in the world to sing this song the way it needs to be sung right now. I’m not ready”. The contract subordination (Phillips; Stahl and Meier) that had led to the need to renegotiate financial terms came at not only a financial cost to the band, but also a physical and emotional one. The negativity impacted the development of the songs for the new album. To make music requires evoking necessary and appropriate emotions in the recording studio (Wood, Duffy, and Smith), so Leto being unable to deliver the song proved problematic. Essentially, the stress of the lawsuit and negotiations damaged the motivation of the band (Amabile; Elsbach and Hargadon; Hallowell) and interfered with their creative approach, which could have produced standardised and poor quality work (Farr and Ford). The dream of making music was almost lost because of the EMI lawsuit. Young creatives often lack bargaining power when entering into contracts with corporations, which can prove disadvantaging when it comes to retaining control over their lives (Phillips; Stahl and Meier). Singer Demi Lovato’s big break came in the 2008 Disney film Camp Rock. As her then manager Phil McIntyre states in the documentary Simply Complicated (2017), Camp Rock was “perceived as the vehicle to becoming a superstar … overnight she became a household name”. However, as “authentic and believable” as Lovato’s edginess appeared, the speed with which her success came took a toll on Lovato. The pressure she experienced having to tour, write songs that were approved by others, star in Disney channel shows and movies, and look a certain way, became too much and to compensate, Lovato engaged in regular drug use to feel free. Accordingly, she developed a hybrid identity to ensure that the squeaky clean image required by the moral clauses of her contract, was not tarnished by her out-of-control lifestyle. The nightmare came from becoming famous at a young age and not being able to handle the expectations that accompanied it, coupled with a stringent contract that exploited her creative talent. Lovato’s is not a unique story. Research has found that musicians are more inclined than those in other workforces to use psychotherapy and psychotropic drugs (Vaag, Bjørngaard, and Bjerkeset) and that fame and money can provide musicians more opportunities to take risks, including drug-use that leads to mortality (Bellis, Hughes, Sharples, Hennell, and Hardcastle). For Lovato, living the dream at a young age ultimately became overwhelming with drugs her only means of escape. AuthenticityThe challenges then for music artists is that the dream of pursuing music can come at the cost of a musician’s authentic self. According to Hughes, “to be authentic is to be in some sense real and true to something ... It is not simply an imitation, but it is sincere, real, true, and original expression of its creator, and is believable or credible representations or example of what it appears to be” (190). For Nick Jonas of the Jonas Brothers, being in the spotlight and abiding by the demands of Disney was “non-stop” and prevented his personal and musical growth (Chasing Happiness). As Kevin Jonas put it, Nick “wanted the Jonas Brothers to be no more”. The extensive promotion that accompanies success and fame, which is designed to drive celebrity culture and financial motivations (Currid-Halkett and Scott; King), can lead to cynical performances and dissatisfaction (Hughes) if the identity work of the creative creates a disjoin between their perceived self and aspirational self (Beech, Gilmore, Cochrane, and Greig). Promoting the band (and having to film a television show and movies he was not invested in all because of contractual obligations) impacted on Nick’s authentic self to the point that the Jonas Brothers made him feel deeply upset and anxious. For Nick, being stifled creatively led to feeling inauthentic, thereby resulting in the demise of the band as his only recourse.In her documentary Gaga: Five Foot Two (2017), Lady Gaga discusses the extent she had to go to maintain a sense of authenticity in response to producer control. As she puts it, “when producers wanted me to be sexy, I always put some absurd spin on it, that made me feel like I was still in control”. Her words reaffirm the perception amongst scholars (Currid-Halkett and Scott; King; Meyers) that in playing the information game, industry leaders will construct an artist’s persona in ways that are most beneficial for, in this case, the record label. That will mean, for example, establishing a coherent life story for musicians that endears them to audiences and engaging recording artists in co-branding opportunities to raise their profile and to legitimise them in the marketplace. Such behaviour can potentially influence the preferences and purchases of audiences and fans, can create favourability, originality and clarity around artists (Loroz and Braig), and can establish competitive advantage that leads to producers being able to charge higher prices for the artists’ work (Hernando and Campo). But what impact does that have on the musician? Lady Gaga could not continue living someone else’s dream. She found herself needing to make changes in order to avoid quitting music altogether. As Gaga told a class of university students at the Emotion Revolution Summit hosted by Yale University:I don’t like being used to make people money. It feels sad when I am overworked and that I have just become a money-making machine and that my passion and creativity take a backseat. That makes me unhappy.According to Eikof and Haunschild, economic necessity can threaten creative motivation. Gaga’s reaction to the commercial demands of the music industry signal an identity conflict because her desire to create, clashed with the need to be commercial, with the outcome imposing “inconsistent demands upon” her (Ashforth and Mael, 29). Therefore, to reduce what could be considered feelings of dissonance and inconsistency (Ashforth and Mael; Ashforth and Humphrey) Gaga started saying “no” to prevent further loss of her identity and sense of authentic self. Taking back control could be seen as a means of reorienting her dream and overcoming what had become dissatisfaction with the commercial processes of the music industry. ConclusionsFor many creatives working in the creative industries – and specifically the music industry – is constructed as a dream come true; the working conditions and expectations experienced by recording artists are far from liberating and instead can become nightmares to which they want to escape. The case studies above, although likely ‘constructed’ retellings of the unfortunate circumstances encountered working in the music industry, nevertheless offer an inside account that contradicts the prevailing ideology that pursuing creative passions leads to a dream career (Florida; Samuel). If anything, the case studies explored above involving 30 Seconds to Mars, the Jonas Brothers, Lady Gaga, Kelly Clarkson, Adam Lambert and the Backstreet Boys, acknowledge what many scholars writing in the creative industries have already identified; that exploitation, subordination, identity conflict and loss of control are the unspoken or lesser known consequences of pursuing the creative dream. That said, the conundrum for creatives is that for success in the industry big “creative” businesses, such as recording labels, are still considered necessary in order to break into the market and to have prolonged success. This is simply because their resources far exceed those at the disposal of independent and up-and-coming creative entrepreneurs. Therefore, it can be argued that this friction of need between creative industry business versus artists will be on-going leading to more of these ‘dream to nightmare’ stories. The struggle will continue manifesting in the relationship between business and artist for long as the recording artists fight for greater equality, independence of creativity and respect for their work, image and identities. 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