Journal articles on the topic 'Drugs Testing Moral and ethical aspects'

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1

Epanomeritakis, Ilias Ektor. "Moral ambivalence towards the Cancer Drugs Fund." Journal of Medical Ethics 45, no. 9 (July 16, 2019): 623–26. http://dx.doi.org/10.1136/medethics-2019-105416.

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The UK’s Cancer Drugs Fund (CDF) was introduced in 2010 following the Conservative Party’s promise to address the fact that numerous efficacious cancer drugs were not available because of their cost ineffectiveness, as deduced by the National Institute of Health and Care Excellence. While, at face value, this policy appears only to promote the UK’s public welfare, a deeper analysis reveals the ethically unjustifiable inconsistencies that the CDF introduces; where is the analogous fund for other equally severe diseases? Have the patients without cancer been neglected simply due to the fear-inducing advertising and particularly ferocious speech which surrounds cancer? The CDF is unjustifiable when challenged by such questions. However, it is troubling to think that the CDF might be repealed in order to abolish these ethical concerns. Intuitively, one feels uncomfortable stripping the cancer patient of their benefits just so that they might be on an equally pessimistic footing with others. In the present essay, I argue that, although there are no ethically justifiable grounds for the CDF’s introduction, its removal would be inappropriate. Following this realisation, I investigate whether the procedural steps of the CDF itself—theoretically removed from the context of resource distribution for all disease types—represent an ethically justifiable system. I believe that the answer is yes, given the CDF’s conformity to accountability for reasonableness, a robust framework of procedural justice, which continuously improves the ethical and epistemological standards of the policies to which it is applied.
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Krajnovic, Dusanka. "Ethical and social aspects on rare diseases." Filozofija i drustvo 23, no. 4 (2012): 32–48. http://dx.doi.org/10.2298/fid1204032k.

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Rare diseases are a heterogenic group of disorders with a little in common except of their rarity affecting by less than 5 : 10.000 people. In the world is registered about 6000-8000 rare diseases with 6-8% suffering population only in the European Union. In spite of rarity, they represent an important medical and social problem due to their incidence. For many rare diseases have no treatment, but if it exists and if started on time as being available to patients, there is a good prognosis for them to be able for normal life. The problems of patients affected by rare diseases are related to the lack of diagnosis and timely undergoing as well as their treatment or prevention. Orphan drugs are products intended for treatment, diagnosis or prevention of rare diseases, but for their development and marketing the industry has not been interested in yet because of their marketing reasons. Patients suffering from a rare disease although belonging to the vulnerable group for their specific health needs, is becoming invisible in the health care system due to their additional needs un properly recognized. Ethical problems faced by patients, but also health care professionals are related to the allocation of medical diagnostics, unequal approach to health care, inappropriately specialized social services as well as therapy and rare orphan drugs unavailability. Ethical questions related to clinical trails on orphan drugs, population screening and epidemiology testing on rare diseases will also be discussed in this paper.
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Surbone, Antonella. "The ethical challenge of genetic testing for breast cancer." Medicina e Morale 48, no. 3 (June 30, 1999): 469–84. http://dx.doi.org/10.4081/mem.1999.799.

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The scientific importance of our recently acquired ability to test for heredity predisposition to breast and ovarian cancers is paralleled only by its social and ethical relevance. Dilemmas are common in all genetic testing, but they assume particular nuances in the setting of breast cancer. Due to its devastating nature and to its increasing incidence, breast cancer is a central issue in women’s health. Breast cancer patients and women in general are often deeply involved in understanding the disease process and the treatment options, as they are in discussing the psychological, social and moral ramifications. This paper is a reflection upon some qualitative aspects of the debate that surrounds genetic testing for breast and ovarian cancer, as they have emerged in my encounters with breast cancer patients prior to their decision to consider genetic testing. The five recurrent themes identified in those conversations may or may not be representative of other practice situations, but they illustrate some fundamental philosophical, ethical and moral questions which exist at the core of our human essence and of our moral agency, and which point to the unavoidable intertwinement of medicine, culture, normativity and philosophy, vis-à-vis the many questions raised by genetics. The Author has intentionally refrained from questionnaires, which could betray the complexity of our thinking process, and from the vignettes, as they could betray confidentiality. The paper concludes that the correct answers to the dilemmas posed by genetic testing for breast cancer predisposition can only arise from a blend of medical, social and philosophical analysis.
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Perry, Joshua E., Ilene N. Moore, Bruce Barry, Ellen Wright Clayton, and Amanda R. Carrico. "The Ethical Health Lawyer: An Empirical Assessment of Moral Decision Making." Journal of Law, Medicine & Ethics 37, no. 3 (2009): 461–75. http://dx.doi.org/10.1111/j.1748-720x.2009.00407.x.

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The empirical literature exploring lawyers and their moral decision making is limited despite the “crisis” of unethical and unprofessional behavior in the bar that has been well documented for over a decade. In particular we are unaware of any empirical studies that investigate the moral landscape of the health lawyer’s practice. In an effort to address this gap in the literature, an interdisciplinary team of researchers at Vanderbilt University designed an empirical study to gather preliminary evidence regarding the moral reasoning of health care attorneys. The primary research question was how health lawyers respond when they encounter ethical or moral dilemmas in their practice for which the law fails to offer a bright-line solution. In exploring this question, we sought to understand better what motivations or influences guide action when health lawyers confront ethical quandaries, and whether there are specific differences, e.g., gender, experience, or religiosity, that are associated with specific responses to situations testing ethical or moral boundaries.
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Mor, Pnina, and Kathleen Oberle. "Ethical Issues Related To BRCA Gene Testing in Orthodox Jewish Women." Nursing Ethics 15, no. 4 (July 2008): 512–22. http://dx.doi.org/10.1177/09697330080150041201.

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Persons exhibiting mutations in two tumor suppressor genes, BRCA1 and BRCA2, have a greatly increased risk of developing breast and/or ovarian cancer. The incidence of BRCA gene mutation is very high in Ashkenazi Jewish women of European descent, and many issues can arise, particularly for observant Orthodox women, because of their genetic status. Their obligations under the Jewish code of ethics, referred to as Jewish law, with respect to the acceptability of various risk-reducing strategies, may be poorly understood. In this article the moral direction that Jewish law gives to women regarding testing, confidentiality, and other issues is explored. The intent is to broaden nurses' knowledge of how a particular religious tradition could impact on decision making around genetics testing, with the aim of enhancing their understanding of culturally sensitive ethical care.
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de Snoo-Trimp, Janine C., Bert Molewijk, Gøril Ursin, Berit Støre Brinchmann, Guy AM Widdershoven, Henrica CW de Vet, and Mia Svantesson. "Field-testing the Euro-MCD Instrument: Experienced outcomes of moral case deliberation." Nursing Ethics 27, no. 2 (June 9, 2019): 390–406. http://dx.doi.org/10.1177/0969733019849454.

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Background: Moral case deliberation is a form of clinical ethics support to help healthcare professionals in dealing with ethically difficult situations. There is a lack of evidence about what outcomes healthcare professionals experience in daily practice after moral case deliberations. The Euro-MCD Instrument was developed to measure outcomes, based on the literature, a Delphi panel, and content validity testing. To examine relevance of items and adequateness of domains, a field study is needed. Aim: To describe experienced outcomes after participating in a series of moral case deliberations, both during sessions and in daily practice, and to explore correlations between items to further validate the Euro-MCD Instrument. Methods: In Sweden, the Netherlands, and Norway, healthcare institutions that planned a series of moral case deliberations were invited. Closed responses were quantitatively analyzed. The factor structure of the instrument was tested using exploratory factor analyses. Ethical considerations: The study was approved in Sweden by a review board. In Norway and the Netherlands, data services and review boards were informed about the study. Results: The Euro-MCD Instrument was completed by 443 and 247 healthcare professionals after four and eight moral case deliberations, respectively. They experienced especially outcomes related to a better collaboration with co-workers and outcomes about individual moral reflexivity and attitude, both during sessions and in daily practice. Outcomes were experienced to a higher extent during sessions than in daily practice. The factor structure revealed four domains of outcomes, which did not confirm the six Euro-MCD domains. Conclusion: Field-testing the Euro-MCD Instrument showed the most frequently experienced outcomes and which outcomes correlated with each other. When revising the instrument, domains should be reconsidered, combined with theory about underlying concepts. In the future, a feasible and valid instrument will be presented to get insight into how moral case deliberation supports and improves healthcare.
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Numminen, Olivia, Jouko Katajisto, and Helena Leino-Kilpi. "Development and validation of Nurses’ Moral Courage Scale." Nursing Ethics 26, no. 7-8 (September 5, 2018): 2438–55. http://dx.doi.org/10.1177/0969733018791325.

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Background: Moral courage is required at all levels of nursing. However, there is a need for development of instruments to measure nurses’ moral courage. Objectives: The objective of this study is to develop a scale to measure nurses’ self-assessed moral courage, to evaluate the scale’s psychometric properties, and to briefly describe the current level of nurses’ self-assessed moral courage and associated socio-demographic factors. Research design: In this methodological study, non-experimental, cross-sectional exploratory design was applied. The data were collected using Nurses’ Moral Courage Scale and analysed statistically. Participants and research context: The data were collected from a convenience sample of 482 nurses from four different clinical fields in a major university hospital in Finland for the final testing of the scale. The pilot comprised a convenience sample of 129 nurses. Ethical considerations: The study followed good scientific inquiry guidelines. Ethical approval was obtained from the university ethics committee and permission to conduct the study from the participating hospital. Findings: Psychometric evaluation showed that the 4-sub-scale, 21-item Nurses’ Moral Courage Scale demonstrates good reliability and validity at its current state of development showing a good level of internal consistency for a new scale, the internal consistency values ranging from 0.73 to 0.82 for sub-scales and 0.93 for the total scale, thus well exceeding the recommended Cronbach’s alpha value of >0.7. Principal component analysis and confirmatory factor analysis supported the theoretical construct of Nurses’ Moral Courage Scale. Face validity and expert panel assessments markedly contributed to the relevance of items in establishing content validity. Discussion and conclusion: Nurses’ Moral Courage Scale provides a new generic instrument intended for measuring nurses’ self-assessed moral courage. Recognizing the importance of moral courage as a part of nurses’ moral competence and its assessment offers possibilities to develop interventions and educational programs for enhancement of moral courage. Research should focus on further validation measures of Nurses’ Moral Courage Scale in international contexts.
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8

Post, Stephen G. "Dementia in Our Midst: The Moral Community." Cambridge Quarterly of Healthcare Ethics 4, no. 2 (1995): 142–47. http://dx.doi.org/10.1017/s0963180100005818.

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This article focuses on the elderly patient with a progressive and irreversible dementia, most often of the Alzheimer type. However dementia, the decline in mental function from a previous state, can occur in all ages. For example, if Alzheimer's disease (AD) is the dementia of the elderly, increasingly AIDS is the dementia of many who are relatively young. I will not present the major ethical issues relating to dementia care following the progression of disease from the mild to the severe stages, for I have done this elsewhere. Among the issues included are: presymptomatic testing, both psychological and genetic; responsible diag- nostic disclosure and use of support groups; restrictions on driving and other activities; preemptive assisted suicide; advance directives for research and treatment; quality of life in relation to the use of life-extending technologies; and euthanasia.
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ISERSON, KENNETH V. "SARS-CoV-2 (COVID-19) Vaccine Development and Production: An Ethical Way Forward." Cambridge Quarterly of Healthcare Ethics 30, no. 1 (June 5, 2020): 59–68. http://dx.doi.org/10.1017/s096318012000047x.

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AbstractThe world awaits a SARS-CoV-2 virus (i.e., COVID-19 disease) vaccine to keep the populace healthy, fully reopen their economies, and return their social and healthcare systems to “normal.” Vaccine safety and efficacy requires meticulous testing and oversight; this paper describes how despite grandiose public statements, the current vaccine development, testing, and production methods may prove to be ethically dubious, medically dangerous, and socially volatile. The basic moral concern is the potential danger to the health of human test subjects and, eventually, many vaccine recipients. This is further complicated by economic and political pressures to reduce government oversight on rushed vaccine testing and production, nationalistic distribution goals, and failure to plan for the widespread immunization needed to produce global herd immunity. As this paper asserts, the public must be better informed to assess promises about the novel vaccines being produced and to tolerate delays and uncertainty.
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Lapaeva, Valentina V. "Preimplantation and prenatal genetic diagnostics in Russian Federation: ethical and legal issues." RUDN Journal of Law 25, no. 1 (December 15, 2021): 179–97. http://dx.doi.org/10.22363/2313-2337-2021-25-1-179-197.

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The topicality of the article is due to the strategy of transition to personalized medicine in Russia, based, among other things, on technologies of preimplantation and prenatal genetic diagnostics. The purpose of the article is to analyze the main directions of ethical and legal support for the development of these technologies. The work is based on the study of relevant international regulations, foreign and Russian legislation using the methods of legal-dogmatic and philosophical-legal analysis. The article substantiates the need for a clearer distinction between legal and moral-religious approaches to regulating relations in applying these technologies. The task is to find legal structures that can take into account the moral aspects of the problem without replacing legal regulation with an appeal to moral and religious values and norms. An example of this approach is the development of a legal regime for manipulations with embryo in vitro, in which the necessary legal protection of the embryo is provided by recognizing its special ontological status as a constitutional value of the common good. From these positions, the author identifies a range of issues that should form the organizational and legal context necessary to ensure adequate guarantees of human rights in the field of application of the considered genetic technologies. The legal regulation of this range of issues should be fixed in a special federal law on genetic testing.
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Salcudean, Andreea, Marius-Catalin Cosma, Andreea-Georgiana Nan, Monica Kiss, Maria-Melania Lica (Cozma), Cristina-Raluca Bodo, and Gabriela-Elena Strete. "Ethical dilemmas and conflicts in minor patients’ care – general review." Romanian Journal of Pediatrics 71, no. 1 (March 31, 2022): 25–29. http://dx.doi.org/10.37897/rjp.2022.1.5.

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The aim of this review study is to analyze and describe the main moral and ethical aspects regarding the minor patients' healthcare related procedures. The Pediatric Ethics differentiate from that of the competent adults, such particularities including surrogate decisions, confidentiality issues, genetic testing and research related matters, end-of-life situations and legal framework. An important aspect is that the child is not entirely lacking capacity, in fact, the literature underlines the importance of listening, analyzing and taking into consideration the minor patient’s opinions, statements or judgements according to their age and cognitive development. The approach of the minor patient should always take into account the triad “doctor-parent-child” without neglecting any of the participants and their role. The main responsibility of the healthcare professionals is to act guided by the best interests of the minor patient.
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Anderson, Gwen. "Nondirectiveness in Prenatal Genetics: patients read between the lines." Nursing Ethics 6, no. 2 (March 1999): 126–36. http://dx.doi.org/10.1177/096973309900600205.

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For decades questionnaires have been used to measure the cognitive and psychological effects of prenatal genetic testing, but little is known about why some women undergo testing and others decline. Research indicates that many factors influence decision making, including values and beliefs. What is often denied rather than recognized is that the professional and personal values and beliefs held by the health care provider influence the patient’s decision. It is assumed that, if genetic services are delivered in a nondirective manner, patients will not be affected by the provider’s personal and professional standpoint. The qualitative research data reported here challenge this assumption. Getting to know patients’ moral understanding and patterns of ethical reasoning by listening to their personal stories is recommended as a better way for nurses to help patients to make informed and autonomous decisions about prenatal genetic screening or diagnostic tests.
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Larcher, Vic, and Joe Brierley. "Developing guidance for pregnancy testing of adolescents participating in research: ethical, legal and practical considerations." Archives of Disease in Childhood 101, no. 10 (April 22, 2016): 980–83. http://dx.doi.org/10.1136/archdischild-2016-310725.

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Adolescents need safe effective drugs that have undergone ethically approved testing in clinical trials; such studies often require pregnancy testing in ‘women of childbearing age’ which includes children/adolescents. There is a lack of consistent standard operating procedures for pregnancy testing in these individuals, in either research or clinical (ie, both preprocedure and clinical emergency) settings. Some harmonisation between a selective or universal testing approach based on a risk analysis of the trial drug or procedure would seem sensible. The need for pregnancy testing and the reasons for the method chosen (universal or selective) should be clearly defined in the research protocol. Research ethics committees (RECs) need to satisfy themselves that the selection of subjects to be tested, the procedures for obtaining consent and the respecting of the young person's confidentiality are appropriate and that management of any positive tests are in accord with local safeguarding policies and procedures. Researchers should have core competencies necessary to manage sensitive questioning and child safeguarding training. Clinical trials of medicinal product (CTIMP) pregnancy testing in females 13–15 years of age requires parental consent and the child's active involvement in the decision-making process (‘assent’) the implications of a positive test should be discussed in advance. Children under 13 years should not normally be subject to pregnancy testing in CTIMPs, unless there are exceptional circumstances, for example, a trial of contraceptive agents of a high teratogenicity risk, as reviewed by a specialist paediatric REC. We analyse the ethical, legal and practical aspects of this issues and supply guidance to support those involved.
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Hudson, Harry. "Coercion in psychiatry: is it right to involuntarily treat inpatients with capacity?" Journal of Medical Ethics 45, no. 11 (August 14, 2019): 742–45. http://dx.doi.org/10.1136/medethics-2019-105357.

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Psychiatric inpatients with capacity may be treated paternalistically under the Mental Health Act 1983. This violates bodily autonomy and causes potentially significant harm to health and moral status, both of which may be long-lasting. I suggest that such harms may extend to killing moral persons through the impact of psychotropic drugs on psychological connectedness. Unsurprisingly, existing legislation is overwhelmingly disliked by psychiatric inpatients, the majority of whom have capacity. I present four arguments for involuntary treatment: individual safety, public safety, authentic wishes and protection of autonomy. I explore these through a case study: a patient with schizophrenia admitted to a psychiatric hospital under the Mental Health Act 1983 after an episode of self-poisoning. Through its discussion of preventative detention, the public safety argument articulates the (un)ethical underpinnings of the current position in English law. Ultimately, none of the four arguments are cogent—all fail to justify the current legal discrimination faced by psychiatric inpatients. I conclude against any use of involuntary treatment in psychiatric inpatients with capacity, endorsing the fusion approach where only psychiatric patients lacking capacity may be treated involuntarily.
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Shilton, Katie, Donal Heidenblad, Adam Porter, Susan Winter, and Mary Kendig. "Role-Playing Computer Ethics: Designing and Evaluating the Privacy by Design (PbD) Simulation." Science and Engineering Ethics 26, no. 6 (July 1, 2020): 2911–26. http://dx.doi.org/10.1007/s11948-020-00250-0.

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AbstractThere is growing consensus that teaching computer ethics is important, but there is little consensus on how to do so. One unmet challenge is increasing the capacity of computing students to make decisions about the ethical challenges embedded in their technical work. This paper reports on the design, testing, and evaluation of an educational simulation to meet this challenge. The privacy by design simulation enables more relevant and effective computer ethics education by letting students experience and make decisions about common ethical challenges encountered in real-world work environments. This paper describes the process of incorporating empirical observations of ethical questions in computing into an online simulation and an in-person board game. We employed the Values at Play framework to transform empirical observations of design into a playable educational experience. First, we conducted qualitative research to discover when and how values levers—practices that encourage values discussions during technology development—occur during the design of new mobile applications. We then translated these findings into gameplay elements, including the goals, roles, and elements of surprise incorporated into a simulation. We ran the online simulation in five undergraduate computer and information science classes. Based on this experience, we created a more accessible board game, which we tested in two undergraduate classes and two professional workshops. We evaluated the effectiveness of both the online simulation and the board game using two methods: a pre/post-test of moral sensitivity based on the Defining Issues Test, and a questionnaire evaluating student experience. We found that converting real-world ethical challenges into a playable simulation increased student’s reported interest in ethical issues in technology, and that students identified the role-playing activity as relevant to their technical coursework. This demonstrates that roleplaying can emphasize ethical decision-making as a relevant component of technical work.
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Spinsante, Susanna, Roberto Antonicelli, Ilaria Mazzanti, and Ennio Gambi. "Technological Approaches to Remote Monitoring of Elderly People in Cardiology: A Usability Perspective." International Journal of Telemedicine and Applications 2012 (2012): 1–10. http://dx.doi.org/10.1155/2012/104561.

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Moving from the experience gained in home telemonitoring of elderly patients with Congestive Heart Failure, that confirmed a reduction of the rehospitalization rate and an improved monitoring of drugs assumption by the patients, this paper extends the evaluation of technological approaches for remote health monitoring of older adults. Focus of the evaluation is on telemedicine effectiveness and usability, either from a patient’s or a medical operator’s perspective. The evaluation has been performed by testing three remote health platforms designed according to different technological approaches, in a realistic scenario involving older adults and medical operators (doctors and nurses). The aim of the testing activity was not to benchmark a specific solution with respect to the others, but to evaluate the main positive and negative issues related to the system and service design philosophy each solution was built upon. Though preliminary, the results discussed in the paper can be used as a set of guidelines in the selection of proper technological equipments for services targeted to elderly users, from a usability perspective. These results need to be complemented with more focused discussions of the ethical, medical, and legal aspects of the use of technology in remote healthcare.
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Wilkinson, Margaret Ann, Christa Walker, and Peter Mercer. "Testing Theory and Debunking Stereotypes: Lawyers’ Views on the Practice of Law." Canadian Journal of Law & Jurisprudence 18, no. 1 (January 2005): 165–201. http://dx.doi.org/10.1017/s0841820900005555.

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This article is the final report of a study of legal ethics and professionalism involving in depth interviews about problem solving conducted with nearly two hundred lawyers practicing in various settings: in different sizes of firms, in different sizes of communities, in private practice and in in-house or corporate counsel positions. Previously published findings of this research project having established that lawyers rarely turn to their ethical codes to solve problems, preferring instead to rely upon informal information gleaned from within their own offices (although lawyers from smaller firms remain more often comfortable with information drawn from beyond the firm than those from larger firms), this article focuses on analysis of the interviews of those lawyers who identified themselves as concerned with issues involving their roles as lawyers. The analysis maps the lawyers' own descriptions of their situations onto the “hired gun” and “counselor” models of lawyer-client interaction taken from the literature. The findings confirm our preliminary findings that these two roles are not mutually exclusive. Although all the lawyers concerned with their roles began in a mentoring mode, most lawyers eventually relinquished their decision-making to their clients, a transition fraught with challenges for many of them. A minority, however, despite the dictates of their code of ethics, withdrew from cases or even, exceptionally, substituted their own decision-making for that of their clients. The article links the mentoring model to the care perspective in the literature of moral development and the hired gun model to the rights perspective. The findings did not establish any support for the claim that the presence of women is creating a "softer" voice in the legal profession. However, two aspects of the structure of the profession, private practice versus in-house practice and the size of the centre in which the practice is located, engendered variations in professional attitudes.
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Coldwell, David A. L., Mervywn Williamson, and Danielle Talbot. "Organizational socialization and ethical fit: a conceptual development by serendipity." Personnel Review 48, no. 2 (March 4, 2019): 511–27. http://dx.doi.org/10.1108/pr-11-2017-0347.

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PurposeA significant and increasing number of graduate recruits take up employment for specific companies by virtue of their ethical reputation and profiles. As such, ethical fit has become an important dimension of the attraction and retention of graduates. However, preconceived notions of a company’s ethical orientation obtained through the media and initial recruitment exercises may be challenged during the induction and socialization phases of organizational entry, such that people may find that the reputation is just an external façade leading to disappointment and a reassessment of the employer. The paper aims to discuss these issues.Design/methodology/approachThe study’s essential focus is on building a conceptual ethical fit model and to underline the need for further conceptual development in the area. The analysis of extant secondary data and the methodology of serendipity were used.FindingsThe model’s conceptual cogency and practical utility for human resource management are analyzed in the light of specific secondary data and specific propositions described.Research limitations/implicationsA major concern with conceptual models is empirical validity and practical utility which requires empirical testing. However, this limitation has been mitigated by the use of a serendipitous approach from a qualitative empirical study with a generalized person–organization (P–O) focus.Practical implicationsVarious practical implications of the model described in the paper for HR management are evident from empirical studies in the area which have dealt with particular aspects of the model. For example, Baueret al.(1998) found that socialization effects employee turnover. And, Cable and Parsons (2001) indicate that organizational socialization is critical in generating committed employees whose values are congruent with those of the organization. Since committed employees are critical for the success of the organization, they suggest training programs for hiring managers and criteria in performance appraisals that include the development of employee value congruence through specific formal socialization tactics.Originality/valueThe paper contributes to the extant literature by building a dynamic conceptual model with attendant testable propositions that explore the implications of employee misalignment in pre-socialization anticipatory organizational ethical fit and post-socialization organizational ethical fit. More specifically, the study contributes to the extant literature by considering the socialization process in relation to ethical fit dynamics. It also considers from the point of view of specific moral development theory and changing perceptions of ethical climate that occur during organizational socialization. Serendipitous material obtained from a qualitative study of P–O fit puts flesh on the bones of the effects of the socialization process on ethical fit described by the paper’s conceptual model while providing circumstantial evidence for the propositions and their practical utility for HR management.
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Cuanalo-Contreras, Karina, and Dennis Benkmann. "Towards More Human and Humane Testing: The Role of the Device Supplier Industry." Alternatives to Laboratory Animals 50, no. 1 (January 2022): 62–70. http://dx.doi.org/10.1177/02611929211073132.

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In vivo testing has been the gold standard for preclinical drug development and toxicology. However, animal-based methods often lack human relevance and have a low predictability rate, not to mention the enormous ethical and financial concerns associated with their use. For instance, according to the US Congressional Budget Office ( cbo.gov ), it takes an average of 10.5 years to take a compound from the preclinical phase to the market, with a cost of US$1–US$2 billion. 90% of drugs that are tested in animals and enter clinical trials fail due to lack of safety and efficacy — this fact questions the significance of in vivo testing. Cells in culture can recapitulate certain aspects of physiology and disease, as well as indicate drug responses and toxicity. Thus, they represent a sophisticated human-relevant and humane alternative. With advances in the in vitro field, it is anticipated that confidence will be gained towards a move away from traditional in vivo models. Specialised supplier industries have been a driving force in the transition to non-animal research, by translating new approach methodologies into scalable products that have been adopted by the regulatory and testing industries — but we are still at the beginning. In this article, we introduce the perspective of the device supplier industry on the current challenges and opportunities surrounding the adoption of new in vitro methods, with the goal of promoting effective co-operation with scientists and other stakeholders. In addition, we highlight some examples of where non-animal approaches have been used in regulatory submissions, as well as listing some educational and training resources that can help when selecting the most appropriate assay.
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Vasilieva, L. N. "Formation of Professional Ethics of Specialists in Economic Profile in Conditions of Higher Education Institution." Modern Economics 26, no. 1 (June 20, 2021): 25–29. http://dx.doi.org/10.31521/modecon.v26(2021)-04.

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Annotation. Introduction. It has been established that the modern stage in the development of vocational education involves a qualitative change in approaches to the definition of its content, as well as the need for increased attention to its professional and ethical orientation in connection with the market paradigm of socio-economic development of the country. The system of higher vocational education is designed to help the student in shaping professional competencies of a specialist, as well as helping a person build up the world of own professional and personal values, to master creative ways to solve professional and life problems based on ethical norms and rules necessary for professional mobility of a specialist. Purpose. Research and generalization of scientific representations on the theoretical aspects of the professional ethics formation of specialists and justify the preconditions for the professional ethics formation of specialists in the conditions of higher education institutions. Results. The theoretically substantiated preconditions for the formation of professional ethics of specialists in the conditions of higher education institutions, which are: in exacerbation of contradictions between the objective need of the labor market in specialists with a high level of professional ethics, capable of applying it in the process of professional activity, and insufficient development of pedagogical conditions of its formation in the conditions of higher education institution; in the need to improve the professional sphere of economics, in connection with the priority in it receipt of profits over the universal moral values; in the relevance of the development of a higher vocational education system in the direction of formation of professional ethics students needed by professionals for professional mobility in a market economy. The concept of "professional ethics of a specialist" is specified as this professional and ethical activity of an axiological nature, that is, activities due to the values of culture, reflecting the degree of ownership of special knowledge, skills, competences in the field of ethics profession. The factors influencing the formation of professional ethics of a specialist in conditions of HEI: pedagogical (didactic drugs), organizational (structural and content model of the formation of ethics of a specialist, which is a set of components: ethicaleducational, cultural and ethical, methodical, competent and diagnostic) whose overcoming in the learning process allows you to move from a zero level to higher. Conclusions. By studying psychological and pedagogical literature, it has been concluded that the structure of professional ethics of a specialist includes cognitive, emotional, communicative, reflexive and educational components. The structural-content model of the formation of ethics of a specialist is proposed, which is a set of components: ethical and educational, cultural and ethical, methodological, competent and diagnostic
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Csépe, Valéria. "Túl az etikán – a humán kutatások kockázatérzékenysége és pszichológiai aspektusai." Scientia et Securitas 2, no. 2 (October 10, 2021): 220–26. http://dx.doi.org/10.1556/112.2021.00059.

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Összefoglaló. A humán kutatások eredményeit bemutató közlemények számos adattal szolgálnak a megismerni kívánt jelenségre vonatkozóan. Általánosan elfogadott elvárás a vonatkozó etikai szabályok szigorú betartása, az előírt vizsgálati protokollok betartása. Az emberekkel végzett vizsgálatoknak azonban van egy olyan dimenziója, amelyre az etikai szabályok nem térnek ki, s amelyek a vizsgálati eredményeket, illetve azok reprezentativitását is befolyásolják. Ezek mindegyike a pszichológia vizsgálódási területéhez tartozik, legyen szó a pszichológiai kutatások etikai kérdéseiről, vagy az orvosbiológiai kutatások, orvosi beavatkozások, illetve azok elfogadásának pszichológiai aspektusairól. A tanulmány a pszichológia megváltozott etikai felfogásának rövid bemutatását követően a genetikai kutatások pszichológiai aspektusait és az egészség-magatartás kritikus kérdéseit elemzi. Az utóbbiak esetében a kockázatészlelés, valamint a bizalom, megbízhatóság pszichológiai modelljeiből kiindulva mutatja be az oltási hajlandóság és az oltásellenesség ismert pszichológiai faktorait. Summary. Publications presenting the results of human research provide a wealth of data on the phenomenon to be explored. It is a generally accepted expectation to adhere strictly to the relevant ethical rules and to the required protocols. However, studies in humans have a dimension that is not fully covered by ethical rules and that also affects the studies’ results and their representativeness. All of these belong to the field of research in psychology, be it the ethical issues of psychological research or the psychological aspects of biomedical research, medical interventions, and their acceptance. Researchers of these and other scientific areas widely believe that science is morally neutral, that is, its task is the discovery of facts, the further development of the investigations’ tools and methods to perform correct analysis and draw reliable conclusions. However, research and development are characterized by a kind of moral neutrality, the essence of which is that the researcher not participating in the decisions on applications is neutral in general. This means that the curiosity driven research should not pay attention to risks associated with the use of results. However, many recent concerns related to the long-term effects of broadly applied inventions speaks for the need on consensus how the consequences could or should be forecasted. Following a brief presentation of the changed ethical perception of psychology, I give some examples on the psychological aspects of genetic research and that of the critical issues in health behavior. Concerns psychological in nature have been articulated in the last decade and it became increasingly clear that genetic testing can also have psychological factors that must be considered. Moreover, the recent focus on psychological aspects of human research shed light on the complexity of health behavior, and questions have been raised about the known psychological factors of the human reactions to suggested therapies, especially those of the vaccination propensity, rejection, and anti-vaccination movements. Although there are only a few systematic studies on this issue, the proper solutions of the Covid-19 should consider the psychological aspects of the acceptance and rejection of vaccination. We may consider that the first waves of the Covid-19 epidemic created situations requiring altered psychological coping, to which psychological research responded primarily by examining the epidemiological situation, illness, and the resulting psychological aspects of lifestyle (treatment of social isolation, stress management, anxiety, depression). Therefore, scientific data on risk perception and psychological factors of vaccine acceptance may contribute to preparedness for globally predicted epidemics and decision-making processes.
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EGGEL, MATTHIAS, CAROLYN P. NEUHAUS, and HERWIG GRIMM. "Reevaluating Benefits in the Moral Justification of Animal Research: A Comment on “Necessary Conditions for Morally Responsible Animal Research”." Cambridge Quarterly of Healthcare Ethics 29, no. 1 (December 20, 2019): 131–43. http://dx.doi.org/10.1017/s0963180119000860.

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Abstract:In a recent paper in Cambridge Quarterly of Healthcare Ethics on the necessary conditions for morally responsible animal research David DeGrazia and Jeff Sebo claim that the key requirements for morally responsible animal research are (1) an assertion of sufficient net benefit, (2) a worthwhile-life condition, and (3) a no-unnecessary-harm condition. With regards to the assertion (or expectation) of sufficient net benefit (ASNB), the authors claim that morally responsible research offers unique benefits to humans that outweigh the costs and harms to humans and animals. In this commentary we will raise epistemic, practical, and ethical challenges to DeGrazia and Sebo’s emphasis on benefits in the prospective assessment of research studies involving animals. We do not disagree with DeGrazia and Sebo that, at the theoretical level, the benefits of research justify our using animals. Our contribution intends to clarify, at the practical level, how we should understand benefits in the prospective assessment and moral justification of animal research. We argue that ASNB should be understood as an assessment of Expectation of Knowledge Production (EKP) in the prospective assessment and justification of animal research. EKP breaks down into two further claims: (1) that morally responsible research generates knowledge worth having and (2) that morally responsible research is designed and executed to produce generalizable knowledge. We understand the condition called knowledge worth having as scientists’ testing a hypothesis that, whether verified or falsified, advances an important interest, and production of generalizable knowledge in terms of scientific integrity. Generalizable knowledge refers to experimental results that generalize to a larger population beyond the animals studied. Generalizable scientific knowledge is reliable, replicable, and accurately descriptive. In sum, morally responsible research will be designed and carefully executed to successfully test a hypothesis that, whether verified or falsified, advances important interests. Our formulation of EKP, crucially, does not require further showing that an experiment involving animals will produce societal benefits.
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23

Sonne, James William Hendry. "Neuroanatomy of the Will." NeuroSci 3, no. 4 (November 7, 2022): 616–23. http://dx.doi.org/10.3390/neurosci3040044.

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Questions regarding the nature and source of consciousness and individual agency to make decisions have enormous practical implications that include human health and wellbeing, social policy, and economics. Ethical issues involving the ability for patients to make conscious, informed choices, such as in cases of dementia or coma, abound, and the health implications of individual choice on public wellbeing are becoming increasingly important as population densities increase. Furthermore, the use of animals for drug testing presents moral dilemmas related to our concepts of consciousness, pain, and consent. While philosophers have long debated aspects of consciousness, the means to scientifically address specific questions regarding regional and cellular functions of the brain are constantly emerging, as are new theories of physical laws and particle interactions which allow for the formation of new hypotheses of the source of consciousness. These emerging capabilities and hypotheses are increasingly able to be subjected to methodological scrutiny by the scientific community. To facilitate open discussion and advances in investigations regarding the nature of consciousness, this Topical Collection is intended to provide a peer-reviewed space to discuss or propose falsifiable hypotheses of consciousness in a full range of systems, using methods across disciplines of biology, physics, computer science, and philosophy of science that can inform such a discussion, while emphasizing the role that our conception of consciousness has on human health, society, and policy.
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Chandrakala, V., and Utpal Kumar Sanki. "Review of Present Trends and Future Scope of Pharmacogenomics in Drug Discovery and Development Process." International Journal of PharmTech Research 13, no. 1 (2020): 66–78. http://dx.doi.org/10.20902/ijptr.2019.130108.

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Pharmacogenomics combines traditional pharmaceutical sciences such as biochemistry with annotated knowledge of genetics, protein chemistry, and DNA polymorphisms. The difference of therapeutic efficacy of the same drug in different individual can be best explained by the study of genetic polymorphisms that underlie individual differences in drug response. The small change of the genome in one individual may make a drug inefficacious as oppose to the other patients. Such variability will bring the individualization of the therapy to obtain the best effects of the drug, as an example autologous dendrimer got a tremendous success in the cancer therapy of the individual. Markers of exposure can determine whether the desired target tissues of a subject have been exposed to a drug at physiological concentrations. Gene expression profiling is a tool that can be used to characterize chemically induced toxicity in cells and/or animal models, in order to provide plausible explanations for observed toxicity in preclinical testing. Pharmacogenomics holds the promise that drugs might one day in future be tailor-made for individuals and adapted to each person's own genetic makeup by the use of microarray technology to express the gene which in turn helps to develop receptor protein. The stability of the drug and its toxicity can be predicted prior to administration of the drug to the subject through the knowledge of computer assisted structural simulation and DNA reactivity technology respectively. This article provides some critical aspects of drug developments, clinical trial design and ethical issues which are centered with pharmacogenomics.
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Hughes, Tara, Timothy Bracewell-Milnes, Srdjan Saso, Benjamin P. Jones, Paula A. Almeida, Katherine Maclaren, Julian Norman-Taylor, Mark Johnson, and Dimitrios Nikolaou. "A review on the motivations, decision-making factors, attitudes and experiences of couples using pre-implantation genetic testing for inherited conditions." Human Reproduction Update 27, no. 5 (May 10, 2021): 944–66. http://dx.doi.org/10.1093/humupd/dmab013.

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Abstract BACKGROUND In pre-implantation genetic testing (PGT), fertile couples undergo IVF with genetic testing of embryos to avoid conceptions with a genetic condition. There is an exponentially increasing uptake with over 600 applications listed by the Human Fertilisation and Embryology Authority in the UK. The psychological aspects of the decision-making process and the experience of PGT, however, are relatively underevaluated, with the potential to leave patients unsupported in their journeys. OBJECTIVE AND RATIONALE In this review, we aim to comprehensively report on every aspect of couples’ experiences of PGT. We consider what motivates users, the practical and ethical decisions involved and how couples navigate the decision-making process. Additionally, we report on the social and psychological impact on couples who are actively undergoing or have completed the PGT process. SEARCH METHODS A systematic search of English peer-reviewed journals of three computerized databases was undertaken following PRISMA guidelines. Studies that examined the motivations, attitudes, decision-making factors and experiences of patients who have been actively engaged in the PGT process were included. No restrictions were placed on study design or date of publication. Studies examining patients using PGT in a hypothetical context or solely using PGT for aneuploidy were excluded. Qualitative data were extracted using thematic analysis. OUTCOMES The main outcomes were patient motivations, deciding factors and attitudes, as well as the patient experience of coming to a decision and going through PGT. Patients were primarily motivated by the desire to have a healthy child and to avoid termination of pregnancy. Those with a sick child or previous experience of termination were more likely to use PGT. Patients also felt compelled to make use of the technology available, either from a moral responsibility to do so or to avoid feelings of guilt if not. The main factors considered when deciding to use PGT were the need for IVF and the acceptability of the technology, the financial cost of the procedure and one’s ethical standpoint on the creation and manipulation of embryos. There was a general consensus that PGT should be applied to lethal or severe childhood disease but less agreement on use for adult onset or variable expression conditions. There was an agreement that it should not be used to select for aesthetic traits and a frustration with the views of PGT in society. We report that couples find it difficult to consider all of the benefits and costs of PGT, resulting in ambivalence and prolonged indecision. After deciding on PGT use, we found that patients find the process extremely impractical and psychologically demanding. WIDER IMPLICATIONS This review aimed to summarize the current knowledge on how patients decide to use and experience PGT and to make suggestions to incorporate the findings into clinical practice. We cannot stress enough the importance of holistic evaluation of patients and thorough counselling prior to and during PGT use from a multidisciplinary team that includes geneticists, IVF clinicians, psychologists and also patient support groups. Large prospective studies using a validated psychological tool at various stages of the PGT process would provide an invaluable database for professionals to better aid patients in their decision-making and to improve the patient experience.
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26

Takooshian, Harold. "Book Review." Society & Animals 1, no. 1 (1993): 101–6. http://dx.doi.org/10.1163/156853093x00181.

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AbstractThe aim of the book is to "capture the movement's moral vision and sense of mission, with sensitivity to its concerns but also an awareness of some of its excesses" (book jacket). It is a brave book in its attempt to provide a dispassionate account of what has become (along with abortion) one of the most passionate controversies of our era. The authors are two sociologists currently at New York University, with long and prolific careers writing about the interface of science and social values. Jasper has written widely on nuclearism, technology, and social change, and Nelkin on genetic engineering, biotechnology, AIDS, nuclearism, ecology, and job safety. Regarding animals, apparently their only two prior studies were co-authored presentations at recent sociology meetings (Jasper & Poulsen, 1989; Jasper, Nelkin, & Poulsen, 1990). Seven of the 12 chapters analyze the nature of the movement. Over the centuries, several social forces (urbanization, industrialization, democratization) have caused a shift in humans' view of animals, from instruments to be used for food, clothing, and farm work to companions to be cherished - pets given a name and family status. It has led to what the authors term "sentimental anthropomorphism," people's attribution to animals of human sentiments such as the abilities to feel emotions and communicate, and to form social relationships. Borrowing tactics from other reformist movements, animal advocates have become more effective in several ways - protests, litigation, boycotts, lobbying, and public relations. Since the 1970s, philosophers like Peter Singer and Tom Regan have honed a notion of "animal rights," providing an important ideological base that has further accelerated the movement. The remaining five chapters focus on five specific themes of the crusade: Regarding "animals in the wild," strong protests have been mounted against large-scale seal hunts, dolphin-safe tuna, trapping, and hunting. "From rabbits to petri dishes" describes the dramatic drop in industrial testing of cosmetics, drugs and toiletries since 1980, to the point where the once-routine Draize and LD-50 tests are now viewed by many as obsolete. "Test tubes with legs" documents the dramatic rise in biomedical research after World War II, and the effectiveness of protests challenging this- reportedly more easily at some labs (Cornell, Berkeley, Museum of Natural History) than at others (New York University, Stanford). "Animals as commodities" concludes that the crusade has persuasively made moral issues of factory farming, humane slaughter, and fur production (both wild and ranch). Finally, in "Animals on display," earlier protests against pit bull and cock fighting have now expanded to rodeos, circuses, Hollywood films, zoos, and animal shows, with only partial impact. Jasper and Nelkin present an overview of the evolution of the animal rights movement by dividing the movement into three parts: (1) Since the 1860s, the original SPCA "welfarists" were part of a larger humanitarian tradition of helping others; (2) Since the 1970s, more assertive "pragmatists" like Henry Spira have demanded "animal rights," using stronger methods in order to force negotiation with those who violate these rights; (3) Since the 1980s, "fundamentalists" like People for the Ethical Treatment of Animals (PETA) have sought to protect animal rights without "hobnobbing in the halls with our enemy" (p. 154) or compromising. Even in the 1990s, welfarist groups like the HSUS and SPCA remain the largest in both membership and funding. Yet there has been a meteoric rise of the crusader factions, eclipsing the welfarists - pragmatists like Spira's Animal Rights International, Joyce Tischler's Animal Legal Defense Fund, Cleveland Amory's Fund for Animals, as well as fundamentalists like PETA, Trans-Species Unlimited, and the Animal Liberation Front. Moreover, the achievements of the crusader groups are telling. For instance PETA grew from its two founders in 1980 to 300,000 in 1990 (p. 31), and between 1980-87 much of the cosmetics industry had come to pledge an end to all animal testing and allocated $5,000,000 for research on alternatives (p. 2). Some of this strength comes from alliance with parallel movements against pollution, racism, sexism, nuclearism, agribusiness, even cholesterol.
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Temmingh, H., D. J. Stein, F. M. Howells, U. A. Botha, L. Koen, M. Mazinu, E. Jordaan, et al. "Biological Psychiatry Congress 2015." South African Journal of Psychiatry 21, no. 3 (August 1, 2015): 24. http://dx.doi.org/10.4102/sajpsychiatry.v21i3.893.

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<p><strong>List of Abstract Titles and authors:<br /></strong></p><p><strong>1. Psychosis: A matter of mental effort?</strong></p><p>M Borg, Y Y van der Zee, J H Hsieh, H Temmingh, D J Stein, F M Howells</p><p><strong>2.In search of an affordable, effective post-discharge intervention: A randomised control trial assessing the influence of a telephone-based intervention on readmissions for patients with severe mental illness in a developing country</strong></p><p><strong></strong>U A Botha, L Koen, M Mazinu, E Jordaan, D J H Niehaus</p><p><strong>3. The effect of early abstinence from long-term methamphetamine use on brain metabolism using 1H-magnetic resonance spectro-scopy (1H-MRS)</strong></p><p>A Burger, S Brooks, D J Stein, F M Howells</p><p><strong>4. The effect of <em>in utero exposure </em>to methamphetamine on brain metabolism in childhood using 1H-magnetic resonance spectroscopy (1H-MRS)</strong></p><p>A Burger, A Roos, M Kwiatkowski, D J Stein, K A Donald, F M Howells</p><p><strong>5. A prospective study of clinical, biological and functional aspects of outcome in first-episode psychosis: The EONKCS Study</strong></p><p><strong></strong>B Chiliza, L Asmal, R Emsley</p><p><strong>6. Stimulants as cognitive enhancers - perceptions v. evidence in a very real world</strong></p><p><strong></strong>H M Clark</p><p><strong>7. Pharmacogenomics in antipsychotic drugs</strong></p><p><strong></strong>Ilse du Plessis</p><p><strong>8. Serotonin in anxiety disorders and beyond</strong></p><p><strong></strong>Ilse du Plessis</p><p><strong>9. HIV infection results in ventral-striatal reward system hypo-activation during cue processing</strong></p><p><strong></strong>S du Plessis, M Vink, J A Joska, E Koutsilieri, A Bagadia, D J Stein, R Emsley</p><p><strong>10. Disease progression in schizophrenia: Is the illness or the treatment to blame?</strong></p><p>R Emsley, M J Sian</p><p><strong>11. Serotonin transporter variants play a role in anxiety sensitivity in South African adolescents</strong></p><p> S M J Hemmings, L I Martin, L van der Merwe, R Benecke, K Domschke, S Seedat</p><p><strong>12. Iron deficiency in two children diagnosed with multiple sclerosis: Report on whole exom sequencing</strong></p><p><strong></strong>S Janse van Rensburg, R van Toorn, J F Schoeman, A Peeters, L R Fisher, K Moremi, M J Kotze</p><p><strong>13. Benzodiazepines: Practical pharmacokinetics</strong></p><p><strong></strong>P Joubert</p><p><strong>14. What to consider when prescribing psychotropic medications</strong></p><p><strong></strong>G Lippi</p><p><strong>15. Current prescribing practices for obsessive-compulsive disorder in South Africa: Controversies and consensus</strong></p><p><strong></strong>C Lochner, L Taljaard, D J Stein</p><p><strong>16. Correlates of emotional and behavioural problems in children with preinatally acquired HIV in Cape Town, South Africa</strong></p><p><strong></strong>K-A Louw, N Phillips, JIpser, J Hoare</p><p><strong>17. The role of non-coding RNAs in fear extinction</strong></p><p><strong></strong>S Malan-Muller, L Fairbairn, W M U Daniels, M J S Dashti, E J Oakleley, M Altorfer, J Harvey, S Seedat, J Gamieldien, S M J Hemmings</p><p><strong>18. An analysis of the management og HIV-mental illness comorbidity at the psychiatric unit of the Dr George Mukhari Academic Hospital</strong></p><p><strong></strong>M L Maodi, S T Rataemane, T Kyaw</p><p><strong>19. The identification of novel genes in anxiety disorders: A gene X environment correlation and interaction study</strong></p><p><strong></strong>N W McGregor, J Dimatelis, S M J Hemmings, C J Kinnear, D J Stein, V Russel, C Lochner</p><p><strong>20. Collaborations between conventional medicine and traditional healers: Obstacles and possibilities</strong></p><p><strong></strong>G Nortje, S Seedat, O Gureje</p><p><strong>21. Thought disorder and form perception: Relationships with symptoms and cognitive function in first-episode schizophrenia</strong></p><p>M R Olivier, R Emsley</p><p><strong>22. Investigating the functional significance of genome-wide variants associated with antipsychotic treatment response</strong></p><p><strong></strong>E Ovenden, B Drogemoller, L van der Merwe, R Emsley, L Warnich</p><p><strong>23. The moral and bioethical determinants of "futility" in psychiatry</strong></p><p><strong></strong>W P Pienaar</p><p><strong>24. Single voxel proton magnetic resonance spectroscopy (1H-MRS) and volumetry of the amylgdala in social anxiety disorder in the context of early developmental trauma</strong></p><p>D Rosenstein, A T Hess, J Zwart, F Ahmed-Leitao, E Meintjies, S Seedat</p><p><strong>25. Schizoaffective disorder in an acute psychiatric unit: Profile of users and agreement with Operational Criteria (OPCRIT)</strong></p><p><strong></strong>R R Singh, U Subramaney</p><p><strong>26. The right to privacy and confidentiality: The ethics of expert diagnosis in the public media and the Oscar Pistorius trial</strong></p><p><strong></strong>C Smith</p><p><strong>27. A birth cohort study in South Africa: A psychiatric perspective</strong></p><p>D J Stein</p><p><strong>28. 'Womb Raiders': Women referred for observation in terms of the Criminal Procedures Act (CPA) charged with fetal abduction and murder</strong></p><p><strong></strong>U Subramaney</p><p><strong>29. Psycho-pharmacology of sleep wake disorders: An update</strong></p><p>R Sykes</p><p><strong>30. Refugee post-settlement in South Africa: Role of adjustment challenges and family in mental health outcomes</strong></p><p><strong></strong>L Thela, A Tomita, V Maharaj, M Mhlongo, K Jonathan</p><p><strong>31. Dstinguishing ADHD symptoms in psychotic disorders: A new insight in the adult ADHD questionnaire</strong></p><p>Y van der Zee, M Borg, J H Hsieh, H Temmingh, D J Stein, F M Howells</p><p><strong>32. Oscar Pistorius ethical dilemmas in a trial by media: Does this include psychiatric evaluation by media?</strong></p><p>M Vorster</p><p><strong>33. Genetic investigation of apetite aggression in South African former young offenders: The involvement of serotonin transporter gene</strong></p><p>K Xulu, J Somer, M Hinsberger, R Weierstall, T Elbert, S Seedat, S Hemmings</p><p><strong>34. Effects of HIV and childhood trauma on brain morphemtry and neurocognitive function</strong></p><p>G Spies, F Ahmed-Leitao, C Fennema-Notestine, M Cherner, S Seedat</p><p><strong>35. Measuring intentional behaviour normative data of a newly developed motor task battery</strong></p><p><strong></strong>S Bakelaar, J Blampain, S Seedat, J van Hoof, Y Delevoye-Turrel</p><p><strong>36. Resilience in social anxiety disorder and post-traumatic stress disorder in the context of childhood trauma</strong></p><p>M Bship, S Bakelaar, D Rosenstein, S Seedat</p><p><strong>37. The ethical dilemma of seclusion practices in psychiatry</strong></p><p>G Chiba, U Subramaney</p><p><strong>38. Physical activity and neurological soft signs in patients with schizophrenia</strong></p><p>O Esan, C Osunbote, I Oladele, S Fakunle, C Ehindero</p><p><strong>39. A retrospective study of completed suicides in the Nelson Mandela Bay Metropolitan Area from 2008 to 2013 - preliminary results</strong></p><p><strong></strong>C Grobler, J Strumpher, R Jacobs</p><p><strong>40. Serotonin transporter variants play a role in anxiety sensitivity in South African adolescents</strong></p><p><strong></strong>S M J Hemmings, L I Martin, L van der Merwe, R Benecke, K Domschke, S Seedat</p><p><strong>41. Investigation of variants within antipsychotic candidate pharmacogenes associated with treatment outcome</strong></p><p>F Higgins, B Drogmoller, G Wright, L van der Merwe, N McGregor, B Chiliza, L Asmal, L Koen, D Niehaus, R Emsley, L Warnich</p><p><strong>42. Effects of diet, smoking and alcohol consumption on disability (EDSS) in people diagnosed with multiple sclerosis</strong></p><p>S Janse van Rensburg, W Davis, D Geiger, F J Cronje, L Whati, M Kidd, M J Kotze</p><p><strong>43. The clinical utility of neuroimaging in an acute adolescnet psychiatric inpatient population</strong></p><p><strong></strong>Z Khan, A Lachman, J Harvey</p><p><strong>44. Relationships between childhood trauma (CT) and premorbid adjustment (PA) in a highly traumatised sample of patients with first-episode schizophrenia (FES</strong>)</p><p>S Kilian, J Burns, S Seedat, L Asmal, B Chiliza, S du Plessis, R Olivier, R Emsley</p><p><strong>45. Functional and cognitive outcomes using an mTOR inhibitor in an adolescent with TSC</strong></p><p>A Lachman, C van der Merwe, P Boyes, P de Vries</p><p><strong>46. Perceptions about adolescent body image and eating behaviour</strong></p><p><strong></strong>K Laxton, A B R Janse van Rensburg</p><p><strong>47. Clinical relevance of FTO rs9939609 as a determinant of cardio-metabolic risk in South African patients with major depressive disorder</strong></p><p>H K Luckhoff, M J Kotze</p><p><strong>48. Childhood abuse and neglect as predictors of deficits in verbal auditory memory in non-clinical adolescents with low anxiety proneness</strong></p><p>L Martin, K Martin, S Seedat</p><p><strong>49. The changes of pro-inflammatory cytokines in a prenatally stressed febrile seizure animal model and whether <em>Rhus chirindensis</em> may attenuate these changes</strong></p><p><strong></strong>A Mohamed, M V Mabandla, L Qulu</p><p><strong>50. Influence of TMPRSS6 A736v and HFE C282y on serum iron parameters and age of onset in patients with multiple sclerosis</strong></p><p><strong></strong>K E Moremi, M J Kotze, H K Luckhoff, L R Fisher, M Kidd, R van Toorn, S Janse van Rensburg</p><p><strong>51. Polypharmacy in pregnant women with serious mental illness</strong></p><p>E Thomas, E du Toit, L Koen, D Niehaus</p><p><strong>52. Infant attachment and maternal depression as predictors of neurodevelopmental and behavioural outcomes at follow-up</strong></p><p>J Nothling, B Laughton, S Seedat</p><p><strong>53. Differences in abuse, neglect and exposure to community violence in adolescents with and without PTSD</strong></p><p><strong></strong>J Nothling, S Suliman, L Martin, C Simmons, S Seedat</p><p><strong>54. Assessment of oxidative stress markers in children with autistic spectrum disorders in Lagos, Nigeria</strong></p><p><strong></strong>Y Oshodi, O Ojewunmi, T A Oshodi, T Ijarogbe, O F Aina, J Okpuzor, O C F E A Lesi</p><p><strong>55. Change in diagnosis and management of 'gender identity disorder' in pre-adolescent children</strong></p><p>S Pickstone-Taylor</p><p><strong>56. Brain network connectivity in women exposed to intimate partner violence</strong></p><p>A Roos, J-P Fouche, B Vythilingum, D J Stein</p><p><strong>57. Prolonged exposure treatment for PTSD in a Third-World, task-shifting, community-based environment</strong></p><p>J Rossouw, E Yadin, I Mbanga, T Jacobs, W Rossouw, D Alexander, S Seedat</p><p><strong>58. Contrasting effects of early0life stress on mitochondrial energy-related proteins in striatum and hippocampus of a rat model of attention-deficit/ hyperactivity disorder</strong></p><p><strong></strong>V Russell, J Dimatelis, J Womersley, T-L Sterley</p><p><strong>59. Attention-deficit hyperactivity disorder in adults: A South African perspective</strong></p><p>R Schoeman, M de Klerk, M Kidd</p><p><strong>60. Cognitive function in women with HIV infection and early-life stress</strong></p><p>G Spies, C Fennema-Notestine, M Cherner, S Seedat</p><p><strong>61. Changes in functional connectivity networks in bipolar disorder patients after mindfulness-based cognitic therapy</strong></p><p>J A Starke, C F Beckmann, N Horn</p><p><strong>62. Post-traumatic stress disorder, overweight and obesity: A systematic review and meta-analysis</strong></p><p><strong></strong>S Suliman, L Anthonissen, J Carr, S du Plessis, R Emsley, S M J Hemmings, C Lochner, N McGregor L van den Heuvel, S Seedat</p><p><strong>63. The brain and behaviour in a third-trimester equivalent animal model of fetal alcohol spectrum disorders</strong></p><p>P C Swart, C B Currin, J J Dimatelis, V A Russell</p><p><strong>64. Irritability Assessment Model (IAM) to monitor irritability in child and adolescent psychiatric disorders.</strong></p><p>D van der Westhuizen</p><p><strong>65. Outcome of parent-adolescent training in chilhood victimisation: Adaptive functioning, psychosocial and physiological variables</strong></p><p>D van der Westhuizen</p><p><strong>66. The effect of ketamine in the Wistar-Kyoto and Sprague Dawley rat models of depression</strong></p><p>P J van Zyl, J J Dimatelis, V A Russell</p><p><strong>67. Investigating COMT variants in anxiety sensitivity in South African adolescents</strong></p><p>L J Zass, L Martin, S Seedat, S M J Hemmings</p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p><strong><br /></strong></p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p><p> </p>
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Lemoine, Marie-Eve. "Moral Responsibility in the Context of Prenatal Testing: What can be Expected?" Commentary 4 (March 4, 2016). http://dx.doi.org/10.7202/1035496ar.

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Authors have suggested that considering the ethical and social aspects of prenatal testing could be seen as an individual responsibility for patients, but no conceptual grounds have been provided for this thesis. I argue that Candace Cummins Gauthier’s account of “moral responsibility as a virtue”, developed as an attempt to reconcile notions of autonomy and community, provides such basis.
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Alpinar-Sencan, Zümrüt, Silke Schicktanz, Natalie Ulitsa, Daphna Shefet, and Perla Werner. "Moral motivation regarding dementia risk testing among affected persons in Germany and Israel." Journal of Medical Ethics, July 21, 2021, medethics—2020–106990. http://dx.doi.org/10.1136/medethics-2020-106990.

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Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer’s disease at a presymptomatic (preclinical) stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel (N=88; 44 participants in each country). Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results.
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30

Vakharia, Kunal. "The right to know: ethical implications of antibody testing for healthcare workers and overlooked societal implications." Journal of Medical Ethics, June 3, 2020, medethics—2020–106467. http://dx.doi.org/10.1136/medethics-2020-106467.

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After the initial surge in cases of coronavirus (COVID-19), the outbreak has been managed differently in different countries. In the USA, it has been managed in many different ways between states, cities and even counties. This disparity is slowly becoming more and more pronounced with the advent of antibody testing. Although many argue over the potential merits of antibody testing as an immunity passport to allow the economy to restart, there are other implications that stand at the heart of the bioethical debate that are often overlooked. Particularly with COVID-19, there are many uncertainties and the discourse alone of antibodies presumes misinformation that may outweigh the epidemiological benefits of antibody testing. Although this paper does not seek to eliminate antibody testing, it does highlight the need for appropriate counselling both on a personal level with each patient but on a more global level. This moral standard of appropriate education is key to allowing the continued autonomy needed during this pandemic.
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31

Dekker, Sidney W. A., Mark D. Layson, and David D. Woods. "Repentance as Rebuke: Betrayal and Moral Injury in Safety Engineering." Science and Engineering Ethics 28, no. 6 (November 14, 2022). http://dx.doi.org/10.1007/s11948-022-00412-2.

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AbstractFollowing other contributions about the MAX accidents to this journal, this paper explores the role of betrayal and moral injury in safety engineering related to the U.S. federal regulator’s role in approving the Boeing 737MAX—a plane involved in two crashes that together killed 346 people. It discusses the tension between humility and hubris when engineers are faced with complex systems that create ambiguity, uncertain judgements, and equivocal test results from unstructured situations. It considers the relationship between moral injury, principled outrage and rebuke when the technology ends up involved in disasters. It examines the corporate backdrop against which calls for enhanced employee voice are typically made, and argues that when engineers need to rely on various protections and moral inducements to ‘speak up,’ then the ethical essence of engineering—skepticism, testing, checking, and questioning—has already failed.
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32

Schmitz, Dagmar, and Wolfram Henn. "The fetus in the age of the genome." Human Genetics, August 23, 2021. http://dx.doi.org/10.1007/s00439-021-02348-2.

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AbstractDue to a number of recent achievements, the field of prenatal medicine is now on the verge of a profound transformation into prenatal genomic medicine. This transformation is expected to not only substantially expand the spectrum of prenatal diagnostic and screening possibilities, but finally also to advance fetal care and the prenatal management of certain fetal diseases and malformations. It will come along with new and profound challenges for the normative framework and clinical care pathways in prenatal (and reproductive) medicine. To adequately address the potential ethically challenging aspects without discarding the obvious benefits, several agents are required to engage in different debates. The permissibility of the sequencing of the whole fetal exome or genome will have to be examined from a philosophical and legal point of view, in particular with regard to conflicts with potential rights of future children. A second requirement is a societal debate on the question of priority setting and justice in relation to prenatal genomic testing. Third, a professional-ethical debate and positioning on the goal of prenatal genomic testing and a consequential re-structuring of clinical care pathways seems to be important. In all these efforts, it might be helpful to envisage the unborn rather not as a fetus, not as a separate moral subject and a second “patient”, but in its unique physical connection with the pregnant woman, and to accept the moral quandaries implicitly given in this situation.
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33

Khasueva, Eliza Umarovna, Yana Evgenevna Efimova, Diana Khasanbievna Khatanova, Leila Ibragimovna Bachieva, Alina Yurievna Maslova, Kamila Nurmagomedovna Magomedova, Aiza Gazimagomedovna Galbatsova, Miyasat Sirazhutdinovna Kurbanova, Taibat Yunadievna Mirzaeva, and Ahmed Romanovich Zadaev. "Particular Patterns of the Influence of the Physiology of Normal Pregnancy on the Pharmacokinetics of Drugs in the Liver." Journal of Pharmaceutical Research International, December 13, 2021, 256–61. http://dx.doi.org/10.9734/jpri/2021/v33i55a33830.

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Pregnant women are the most "untouchable" group of people in relation to pharmacological research due to ethical and legal aspects, as well as concerns for the health and integrity of the fetus. And that is why pregnant women practically do not participate in clinical, pharmacodynamic, or pharmacokinetic testing. The mechanisms of teratogenesis are unpredictable, and in this case mutations can occur regardless of the duration of pregnancy and at any level. In women during pregnancy, the activity of liver enzyme systems involved in drug metabolism changes completely, which affects their clearance. This should be taken into account when selecting drugs and dosages for the treatment of various diseases. Our study showed that during pregnancy, a significant decrease in the intrinsic hepatic clearance of the CYP1A2 substrate is enhanced by a decrease in the binding of theophylline to plasma proteins and an increase in the glomerular filtration rate.
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34

Pugh, Jonathan, Dominic Wilkinson, and Julian Savulescu. "Sense and sensitivity: can an inaccurate test be better than no test at all?" Journal of Medical Ethics, April 5, 2021, medethics—2021–107234. http://dx.doi.org/10.1136/medethics-2021-107234.

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The UK government has put lateral flow antigen tests (LFATs) at the forefront of its strategy to scale-up testing in the coronavirus pandemic. However, evidence from a pilot trial using an LFAT to identify asymptomatic infections in the community suggested that the test missed over half of the positive cases in the tested population. This raises the question of whether it can be ethical to use an inaccurate test to guide public health measures. We begin by explicating different dimensions of test accuracy (sensitivity, specificity and predictive value), and why they matter morally, before highlighting key data from the Liverpool pilot. We argue that the poor sensitivity of the LFAT in this pilot trial suggests that there are important limitations to what we can expect these tests to achieve. A test with low sensitivity will provide false-negative results, and in doing so generate the risk of false assurance and its attendant moral costs. However, we also suggest that the deployment of an insensitive but specific test could identify many asymptomatic carriers of the virus who are currently being missed under existing arrangements. Having outlined ways in which the costs of false reassurance could potentially be mitigated, we conclude that the use of an insensitive LFAT in mass testing may be ethical if (1) it is used predominantly to identify positive cases, (2) it is a cost-effective method of achieving that goal and (3) if other public health tools can effectively prevent widespread false reassurance.
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Abdullah bin Ahmed Al-Anzi. "The possibilities of extracurricular activities in the students' Spiritual and moral formation at Aktobe University, Orenburg in Russia and Kazakhstan." مجلة العلوم التربوية و النفسية 3, no. 10 (May 30, 2019). http://dx.doi.org/10.26389/ajsrp.e051218.

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The aim of the research was to identify the role of extracurricular activities in the emotional and moral development of students at the universities of Aktobe and Orenburg in Prussia and Kazakhstan. To achieve this goal, research was carried out in three stages: Phase I- Analysis and Diagnosis- The stage included the definition of the systematic basis of research and the degree of problem of study in Kazakhstan and Russia, foreign literature and student education, analysis of the main provisions of the normative documents of the legislative, and the characteristics of the main positions of research, conceptual and class system. , Tasks, search hypotheses. At this stage, a number of methods and methods were adopted: analysis of theoretical sources, targeted educational supervision, questionnaire, and experiment testing. Phase II- Model Design- The trial phase during which the work system was conducted on the moral and spiritual composition of the student identity, the reform and preliminary analysis of the received facts was carried out. Search hypothesis selected. The data obtained was analyzed and interpreted. At this stage, a number of methods and techniques have been adopted: modeling, theoretical analysis, information synthesis, questionnaire, testing, skilled and experimental work, and methods of mathematical statistics. Phase III- Summary and Analysis- The stage is characterized by the final analysis of the results received during the skilled and experimental work, its methodology, the generalization, the formulation of research findings, and the recording of research in the form of thesis. The methods used at this stage were: mathematical data processing, tabulation and interpretation of the graph of the results received, comparative analysis. The study sample consisted of (89) respondents from Aktobe University, Orenburg in Russia and Kazakhstan, divided into three groups; two groups and two other groups with 29 students each. The study showed the following results: • Changes were made in a motivational standard and value for spiritual and moral formation: positive positive motives and aspiration for spiritual moral improvement were found in 74.7% of students (compared to 19.5% at the beginning of the experiment). Values ​​measured such as "freedom", "responsibility", "action", "education", "conscience", "mercy". • The student initiative in the social and educational practice of activities for us was an indicator of the positive change of the activity standard. • Extra-curricular activities are integrated in content and techniques and provide mutual enrichment of the spiritual ethical standards of the subject. • Extracurricular activities promote the inclusion of essential aspects of the spiritual and moral formation of the personality at the level of the subjects studied by the student. • The opportunities offered by extracurricular activities allow for the improvement of the spiritual and moral formation of the student, taking into account the requirements of modern science and practice.
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36

Magelssen, Morten, Magnhild Rasmussen, Sean Wallace, and Reidun Førde. "Priority setting at the clinical level: the case of nusinersen and the Norwegian national expert group." BMC Medical Ethics 22, no. 1 (May 4, 2021). http://dx.doi.org/10.1186/s12910-021-00623-5.

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Abstract Background Nusinersen is one of an increasing number of new, expensive orphan drugs to receive authorization. These drugs strain public healthcare budgets and challenge principles for resource allocation. Nusinersen was introduced in the Norwegian public healthcare system in 2018. A national expert group consisting of physicians was formed to oversee the introduction and continuation of treatment in light of specific start and stop criteria. Methods We have studied experiences within the expert group with a special emphasis on their application of the start and stop criteria, rationing of treatment, and experienced moral dilemmas. A research interview with six members of the national expert group was performed, then analysed with manifest content analysis. The analysis was supplemented with publically available sources on priority setting and the process leading up to the introduction of nusinersen and the establishment of the expert group. Results Sixty-six patients have received treatment within the first 25 months since the national expert group’s establishment. Treatment has not been discontinued for any patient. No patients under 18 years of age have been denied treatment, as those who were referred at this age were all deemed to fulfill the start criteria. The expert group has, however, increased geographical treatment equity and facilitated important cooperation at the national level. Furthermore, it has enhanced open and critical discussions of both medical issues and new ethical dilemmas. Conclusion Although facilitating equal access to treatment for SMA patients, the national expert group has not discontinued treatment for any patient. It is suggested that in order for clinicians to be able to ration care for individual patients, they require both adequate support and sufficient formal authority. Start and stop criteria need to be re-evaluated as more knowledge and experience are gained regarding the treatment.
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Lilley, Cullen M., and Kamran M. Mirza. "Critical role of pathology and laboratory medicine in the conversation surrounding access to healthcare." Journal of Medical Ethics, April 16, 2021, medethics—2021–107251. http://dx.doi.org/10.1136/medethics-2021-107251.

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Pathology and laboratory medicine are a key component of a patient’s healthcare. From academic care centres, community hospitals, to clinics across the country, pathology data are a crucial component of patient care. But for much of the modern era, pathology and laboratory medicine have been absent from health policy conversations. Though select members in the field have advocated for an enhanced presence of these specialists in policy conversations, little work has been done to thoroughly evaluate the moral and ethical obligations of the pathologist and the role they play in healthcare justice and access to care. In order to make any substantive improvements in access to care, pathology and laboratory medicine must have a seat at the table. Specifically, pathologists and laboratorians can assist in bringing about change through improving clinician test choice, continuing laboratory improvement programmes, promoting just advanced diagnostic distribution, triage testing and be good stewards of healthcare dollars, and recruiting a more robust laboratory workforce. In order to get to that point, much work has to be done in pathology education and the laboratory personnel training pipeline but there also needs to be adjustments at the system level to better involve this invaluable group of specialists in these policy conversations.
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Mihailov, Emilian, Veerle Provoost, and Tenzin Wangmo. "Acceptable objectives of empirical research in bioethics: a qualitative exploration of researchers’ views." BMC Medical Ethics 23, no. 1 (December 28, 2022). http://dx.doi.org/10.1186/s12910-022-00845-1.

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Abstract Background This is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable. Methods Using qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. Results From the eight objectives presented to the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results. Conclusions Our results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry.
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39

Childers, Chad. "Extending Animal Cruelty Protections to Scientific Research." Voices in Bioethics 8 (July 5, 2022). http://dx.doi.org/10.52214/vib.v8i.9490.

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Photo by Sandy Millar on Unsplash INTRODUCTION On November 25, 2019, the federal law H.R. 724 – the Preventing Animal Cruelty and Torture Act (PACT) prohibiting the intentional harm of “living non-human mammals, birds, reptiles, or amphibians” was signed.[1] This law was a notable step in extending protections, rights, and respect to animals. While many similar state laws existed, the passing of a federal law signaled a new shift in public tone. PACT is a declaration of growing societal sentiments that uphold the necessity to shield our fellow creatures from undue harm. Protecting animals from the harm of citizens is undoubtedly important, but PACT does nothing to protect animals from state-sanctioned harm, particularly in the form of research, which causes death and cruelty. It is time to extend and expand protections for animals used in research. BACKGROUND There is a long history of animal experimentation in the US, but no meaningful ethical protections of animals emerged until the 20th century. Proscription of human experimentation and dissection led to animals bearing the brunt of harm for scientific and medical progress. For instance, English physician William Harvey discovered the heart did not continuously produce blood but instead recirculated it; he made this discovery by dissecting and bleeding out living dogs without anesthesia.[2] Experiments like this were considered ethically tenable for hundreds of years. Philosophers like Immanuel Kant, Thomas Aquinas, and Rene Descartes held that humans have no primary moral obligations to animals and that one should be concerned about the treatment of an animal only because it could indicate how one would treat a human.[3] During the 20th century, as agriculture became more industrialized and government funding for animal research increased, the social demand for ethical regulations finally began to shift. In 1966, the Animal Welfare Act (Public Law 89-544) marked the first American federal legislation to protect laboratory animals, setting standards for use of animals in research.[4] ANALYSIS There has been progress in the field of animal research ethics since Harvey’s experiments, but much work remains. In the US alone, there are an estimated 20 million mice, fish, birds, and invertebrates used for animal research each year that are not regulated by the Animal Welfare Act.[5] Instead, the “3Rs Alternatives” approach (“reduce, replace, and refine”)[6] is one framework used to guide ethical treatment of animals not covered by federal protections. Unfortunately, unpacking the meaning and details of this approach only leads to ambiguity and minimal actionable guidance. For instance, an experimenter could reduce the number of animals used in research but subsequently increase the number of experiments conducted on the remaining animals. Replace could be used in the context of replacing one species with another. Refining is creating “any decrease in the severity of inhumane procedures applied to those animals, which still have to be used.”[7] The vague “any” implies that even a negligible minimization would be ethically acceptable.[8] An experimenter could technically follow each of the “3Rs” with minimal to no reduction in harm to the animals. One must also consider whether it is coherent to refer to guidelines as ethical when they inevitably produce pain, suffering, and death as consequences of research participation. Other ethical guides like Humane Endpoints for Laboratory Animals Used in Regulatory Testing[9] encourage researchers to euthanize animals that undergo intractable pain or distress. This is a fate that an estimated one million animals face yearly in the US.[10] However, to use the word “humane” in this context contradicts the traditional meaning and undermines the integrity of the word. Taking living creatures, forcing them to experience intractable pain and suffering for human benefit, and killing them is the antithesis of what it means to be humane. During one of my Animal Ethics classes as a graduate student, our cohort visited an animal research facility to help inform our opinions on animal research. We observed one of the euthanasia chambers for lab mice – an enclosed metal lab bench with a sign above describing methods for euthanasia if CO2 asphyxiation were to fail. The methods included decapitation, removal of vital organs, opening of the chest cavity, incision of major blood vessels, and cervical dislocation.[11] Behind us were rows and rows of see-through shoebox-sized containers housing five mice in each little box. Thousands of mice were packed together in this room for the sole purpose of breeding. If the mice were not the correct “type” for research, then they were “humanely” euthanized. “Humane,” in this context, has been deprived of its true meaning. One can acknowledge that animal research was historically necessary for scientific progress, but those that currently claim these practices are still required must show empirically and undoubtedly this is true. As of now, this is not a settled issue. In the scientific community, there is contention about whether current animal research is actually applicable to humans.[12] Many drug researchers even view animal testing as a tedious barrier to development as it may be wholly irrelevant to the drug or medical device being tested. Since 1962, the FDA has required preclinical testing in animals; it is time to question whether this is necessary or helpful for drug development. CONCLUSION The scientific community should stop viewing animal testing as an unavoidable evil in the search for medical and technological innovation. PACT should be amended and extended to all animals and the FDA should modify the requirement for preclinical animal testing of all drugs and medical devices. It is time to encourage the scientific community to find alternative research methods that do not sacrifice our fellow animals. We use animals as test subjects because, in some sense, they resemble humans. But, if they are indeed like humans, they should receive similar protections. Science builds a better world for humans, but perhaps it is time for science to be more inclusive and build a better world for all creatures. - [1] Theodore E. Deutch, “Text - H.R.724 - 116th Congress (2019-2020): Preventing Animal Cruelty and Torture Act,” legislation, November 25, 2019, 2019/2020, https://www.congress.gov/bill/116th-congress/house-bill/724/text. [2] Anita Guerrini, “Experiments, Causation, and the Uses of Vivisection in the First Half of the Seventeenth Century,” Journal of the History of Biology 46, no. 2 (2013): 227–54. [3] Bernard E. Rollin, “The Regulation of Animal Research and the Emergence of Animal Ethics: A Conceptual History,” Theoretical Medicine and Bioethics 27, no. 4 (September 28, 2006): 285–304, https://doi.org/10.1007/s11017-006-9007-8; Darian M Ibrahim, “A Return to Descartes: Property, Profit, and the Corporate Ownership of Animals,” LAW AND CONTEMPORARY PROBLEMS 70 (n.d.): 28. [4] Benjamin Adams and Jean Larson, “Legislative History of the Animal Welfare Act: Introduction | Animal Welfare Information Center| NAL | USDA,” accessed November 3, 2021, https://www.nal.usda.gov/awic/legislative-history-animal-welfare-act-introduction. [5] National Research Council (US) and Institute of Medicine (US) Committee on the Use of Laboratory Animals in Biomedical and Behavioral Research, Patterns of Animal Use, Use of Laboratory Animals in Biomedical and Behavioral Research (National Academies Press (US), 1988), https://www.ncbi.nlm.nih.gov/books/NBK218261/. [6] Robert C. Hubrecht and Elizabeth Carter, “The 3Rs and Humane Experimental Technique: Implementing Change,” Animals: An Open Access Journal from MDPI 9, no. 10 (September 30, 2019): 754, https://doi.org/10.3390/ani9100754. [7] Hubrecht and Carter. [8] Hubrecht and Carter. [9] William S. Stokes, “Humane Endpoints for Laboratory Animals Used in Regulatory Testing,” ILAR Journal 43, no. Suppl_1 (January 1, 2002): S31–38, https://doi.org/10.1093/ilar.43.Suppl_1.S31. [10] Stokes. [11] “Euthanasia of Research Animals,” accessed April 21, 2022, https://services-web.research.uci.edu/compliance/animalcare-use/research-policies-and-guidance/euthanasia.html. [12] Neal D. Barnard and Stephen R. Kaufman, “Animal Research Is Wasteful and Misleading,” Scientific American 276, no. 2 (1997): 80–82.
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40

Nairn, Angelique, and Deepti Bhargava. "Demon in a Dress?" M/C Journal 24, no. 5 (October 6, 2021). http://dx.doi.org/10.5204/mcj.2846.

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Introduction The term monster might have its roots in the Latin word monere (to warn), but it has since evolved to have various symbolic meanings, from a terrifying mythical creature to a person of extreme cruelty. No matter the flexibility in use, the term is mostly meant to be derogatory (Asma). As Gilmore puts it, monsters “embody all that is dangerous and horrible in the human imagination” (1). However, it may be argued that monsters sometimes perform the much-needed work of defining and policing our norms (Mittman and Hensel). Since their archetype is predisposed to transgressing boundaries of human integrity (Gilmore), they help establish deviation between human and in-human. Their cognition and action are considered ‘other’ (Kearney) and a means with which people can understand what is right and wrong, and what is divergent from appropriate ways of being. The term monster need not even refer to the werewolves, ogres, vampires, zombies and the like that strike fear in audiences through their ‘immoral, heinous or unjust’ appearance or behaviours. Rather, the term monster can be, and has been, readily applied as a metaphor to describe the unthinkable, unethical, and brutal actions of human beings (Beville 5). Inadvertently, “through their bodies, words, and deeds, monsters show us ourselves” (Mittman and Hensel 2), or what we consider monstrous about ourselves. Therefore, humans acting in ways that deviate from societal norms and standards can be viewed as monstrous. This is evident in the representations of public relations practitioners in media offerings. In the practice of public relations, ethical standards are advocated as the norm, and deviating from them considered unprofessional (Fawkes), and as we contend: monstrous. However, the practice has long suffered a negative stereotypical perception of being deceptive, and with public relations roles receiving less screen time than shows and films about lawyers, accountants, teachers and the like, these few derogatory depictions can distort how audiences view the occupation (Johnston). Depictions of professions (lawyers, cops, journalists, etc.) tend to be cliché, but our contention is that fewer depictions of public relations practitioners on screen further limit the possibility for diverse depictions. The media can have a socialising impact and can influence audiences to view the content they consume as a reflection of the real world around them (Chandler). Television, in particular, with its capacity to prompt heuristic processing in audiences (Shurm), has messages that can be easily decoded by people of various literacies as they become immersed in the viewing experiences (Gerbner and Gross). These messages gain potency because, despite being set in fictional worlds, they can be understood as reflective of the world and audiences’ experiences of it (Gerbner and Gross). Tsetsura, Bentley, and Newcomb add that popular stories recounted in the media have authoritative power and can offer patterns of meaning that shape individual perceptions. Admittedly, as Stuart Hall suggests, media offerings can be encoded with ideologies and representations that are considered appropriate according to the dominant elite, but these may not necessarily be decoded as preferred meanings. In other words, those exposed to stories of monstrous public relations practitioners can agree with such a position, oppose this viewpoint, or remain neutral, but this is dependent on individual experiences. Without other frames of reference, it could be that viewers of negative portrayals of public relations accept the encoded representation that inevitably does a disservice to the profession. When the representations of the field of public relations suggest, inaccurately, that the industry is dominated by men (Johnston), and women practitioners are shown as slick dressers who control and care little about ethics (Dennison), the distortions can adversely impact on the identities of public relations practitioners and on how they are collectively viewed (Tsetsura et al.). Public relations practitioners view this portrayal as the ‘other’ and tend to distance the ideal self from it, continuing to be stuck in the dichotomy of saints and sinners (Fawkes). Our observation of television offerings such as Scandal, Flack, Call My Agent!, Absolutely Fabulous, Sex and the City, You’re the Worst, and Emily in Paris reveals how television programmes continue to perpetuate the negative stereotypes about public relations practice, where practitioners are anything but ethical—therefore monstrous. The characters, mostly well-groomed women, are shown as debased, liars and cheaters who will subvert ethical standards for personal and professional gain. Portrayals of Public Relations Practitioners in Television and Media According to Miller, the eight archetypical traits identified in media representations of public relations practitioners are: ditzy, obsequious, cynical, manipulative, money-minded, isolated, accomplished, or unfulfilled. In later research, Yoon and Black found that television representations of public relations tended to suggest that people in these roles were heartless, manipulative bullies, while Lambert and White contend that the depiction of the profession has improved to be more positive, but nonetheless continues to do a disservice to the practice by presenting female workers, especially, as “shallow but loveable” (18). We too find that public relations practitioners continue to be portrayed as morally ambiguous characters who are willing to break ethical codes of conduct to suit the needs of their clients. We discuss three themes prevalent as popular tropes in television programmes that characterise public relations practitioners as monstrous. To Be or Not to Be a Slick and Skilful Liar? Most television programmes present public relations practitioners as slick and skilful liars, who are shown as well-groomed and authoritative, convinced that they are lying only to protect their clients. In fact, in most cases the characters are shown to not only believe but also advocate to their juniors that ‘a little bit of lying’ is almost necessary to maintain client relationships and ensure campaign success. For example, in the British drama Flack, the main character of Robyn (played by Anna Paquin) is heard advising her prodigy “just assume we are lying to everyone”. The programmes also feature characters who are in dilemma about the monstrous expectations from their roles, struggling to accept that that they engage in deception as part of their jobs. However, most of them are presented as somewhat of an ugly duckling or the modest character in the programme, who is not always rational or in an explicit position of power. For example, Emily from Emily in Paris (played by Lily Collins), while working as a social media manager, regularly questions the approaches taken by the firm she works for. Her boss Sylvie Grateux (played by Philippine Leroy-Beaulieu), who embodies the status quo, is constantly disapproving of Emily’s lack of sophisticated self-presentation, among other aspects. In the episode ‘Faux Amis’, Sylvie quips “it’s not you personally. It’s everything you stand for. You’re the enemy of luxury because luxury is defined by sophistication and taste, not emilyinparis”. Similarly, in the first episode of Call My Agent!, Samuel Kerr (played by Alain Rimoux), the head of a film publicity firm, solves the conundrum faced by his anxious junior Gabriel (played by Grégory Montel) by suggesting that he lie to his client about the real reason why she lost the film. When a modestly dressed Gabriel questions how he can lie to someone he cares for, Samuel, towering over him in an impeccable suit and a confident demeanour, advises “who said anything about lying? Don’t lie. Simply don’t tell her the truth”. However, the subtext here is that the lie is to protect the client from unnecessary hurt and in doing so nurtures the client relationship. So, it lets the audience decide the morality of lying here. It may be argued that moral ambiguity may not necessarily be monstrous. Such grey characters are often crafted because they allow audiences to relate more readily to themselves by encouraging what Hawkins refers to as mental play. Audiences are less interested in the black and white of morality and veer towards shows such as Call My Agent! where storylines hone in on the need to do bad for the greater good. In these ways, public relations practitioners still transgress moral standards but are less likely to be considered monstrous because the impact and effect on others is utilitarian in nature. It is also interesting to note that in these programmes physical appearance is made to play a crucial role in showcasing the power and prestige of the senior public relations practitioner. This focus on attire can tend to further perpetuate unfavourable stereotypes about public relations practitioners being high income earners (Grandien) who are styled with branded apparel but lacking in substance and morals (Fröhlich and Peters). Promiscuous Women The urge to attract audiences to a female character can also lead to developing and cementing unfavourable stereotypes of public relations practitioners as uninhibited women who live on blurred lines between personal and professional. These characters are not portrayed as inherently bad, but instead are found to indulge in lives of excess. In her definition of the monstrous, Arumugam suggests that excess and insatiable appetites direct the monster’s behaviour, and Kearney outlines that this uncontainable excess is what signals the difference between humans and others. Such excess is readily identifiable in the character of Patsy Stone (played by Joanna Lumley) in Absolutely Fabulous. She is an alcoholic, regularly uses recreational drugs, is highly promiscuous, and chain-smokes throughout the series. She is depicted as prone to acting deceptively to maintain her vices. In Flack, Robyn is shown as regularly snorting cocaine and having sex with her clients. Those reviewing the show highlight how it will attract those interested in “its dark, acidic sense of humour” (Greene) while others condemn it because it emphasises the “depraved publicist” trope (Knibbs) and call it “one of the worst TV shows ever made” even though it is trying to highlight concerns raised in the MeToo movement about how men need to respect women (McGurk). Female characters such as Robyn, with her willingness to question why a client has not tried to sleep with her, appear to undermine the empowerment of the movement rather than support it, and continue to maintain the archetypes that those working in the field of public relations abhor. Similarly, Samantha Jones (played by Kim Cattrell) of Sex and the City is portrayed as sexually liberated, and in one episode another character describes Samantha’s vagina as “the hottest spot in town: it’s always open”. In many ways Samantha’s sexual behaviour reflects a post-feminist narrative of empowerment, agency, and choice, but it could also be read as a product of being a public relations practitioner frequenting parties and bars as she rubs shoulders with clients, celebrities, and high-profile businesspeople. To this end, Patsy, Samantha, and Robyn glamourise public relations and paint it as simply an extension of their liberated and promiscuous selves, with little care for any expectation of professionalism or work ethic. This is also in stark contrast to the reality, where women often tend to occupy technical roles that see much of their time spent in doing the hard yards of publicity and promotion (Krugler). Making Others Err Public relations practitioners are not just shown as being morally ambiguous themselves, but often quite adept at making others do deceitful acts on their behalf, thus nonchalantly oppressing others to get their way. For example, although lauded for elevating an African-American woman to the lead role despite the show maintaining misrepresentations of race (Lambert), the main character of Olivia Pope (played by Kerry Washington) in the television programme Scandal regularly subverts the law for her clients despite considering herself one of the “good guys” and wearing a “white hat”. Over the course of seven seasons, Olivia Pope is found to rig elections, plant listening devices in political figures’ offices, bribe, threaten, and conduct an affair with the President. In some cases, she calls on the services of her colleague Huck to literally, and figuratively, get rid of the barriers in the way of protecting her clients. For example, in season one’s episode Crash and Burn she asks Huck to torture a suspect for information about a dead client. Her willingness to request such actions of her friend and colleague, regardless of perceived good motivations, reinforces Mittman’s categorisation that monsters are identified by their effect and impact on others. Here, the impact includes the torturing of a suspect and the revisiting of psychological trauma by Huck’s character. Huck struggles to overcome his past as a killer and spends much of the show trying to curb his monstrous tendencies which are often brought on by PR woman Olivia’s requests. Although she is sometimes striving for justice, Olivia’s desire for results can lead her to act monstrously, which inadvertently contributes to the racist and sexist ideologies that have long been associated with monsters and perceptions of the Other. Across time and space, certain ethnic groups, such as those of African descent, have been associated with the demonic (Cohen). Similarly, all that is feminine often needs to be discarded as the monster to conform to the patriarchal order of society (Creed). Therefore, Olivia Pope’s monstrous behaviour not only does a disservice to representations of public relations practitioners, but also inadvertently perpetuates negative and inaccurate stereotypes about women of African American descent. Striving to be Ethical The majority of public relations practitioners are encouraged, and in some cases expected, to conform to ethical guidelines to practice and gain respect, admiration, and in-group status. In New Zealand, those who opt to become members of the Public Relations Institute of New Zealand (PRINZ) are required to abide by the association’s code of ethics. The code stipulates that members are bound to act in ways that serve public interests by ensuring they are honest, disclose conflict of interests, follow the law, act with professionalism, ensure openness and privacy are maintained, and uphold values of loyalty, fairness, and independence (PRINZ). Similarly, the Global Alliance of Public Relations and Communication Management that binds practitioners together identifies nine guiding principles that are to be adhered to to be recognised as acting ethically. These include obeying laws, working in the public’s interest, ensuring freedom of speech and assembly, acting with integrity, and upholding privacy in sensitive matters (to name a few). These governing principles are designed to maintain ethical practice in the field. Of course, the trouble is that not all who claim to practice public relations become members of the local or global governing bodies. This implies that professional associations like PRINZ are not able to enforce ethics across the board. In New Zealand alone, public relations consultants have had to offer financial reparations for acting in defamatory ways online (Fisher), or have been alleged to have bribed an assault victim to prevent the person giving evidence in a court case (Hurley). Some academics have accused the industry of being engaged in organised lying (Peacock), but these are not common, nor are these moral transgressors accepted into ethical bodies that afford practitioners authenticity and legitimacy. In most cases, public relations practitioners view their role as acting as the moral conscience of the organisations they support (Schauster, Neill, Ferrucci, and Tandoc). Furthermore, they rated better than the average adult when it came to solving ethical dilemmas through moral reasoning (Schuaster et al.). Additionally, training of practitioners through guidance of mentors has continued to contribute to the improved ethical ratings of public relations. What these findings suggest is that the monsters of public relations portrayed on our television screens are exaggerations that are not reflective of most of the practice. Women of Substance, But Not Necessarily Power Exploring the role of women in public relations, Topic, Cunha, Reigstad, Jele-Sanchez, and Moreno found that female practitioners were subordinated to their male counterparts but were found to be more inclined to practice two-way communication, offer balanced perspectives, opt to negotiate, and build relationships through cooperation. The competitiveness, independence, and status identified in popular media portrayals were found to be exhibited more by male practitioners, despite there being more women in the public relations industry than men. As Fitch argues, popular culture continues to suggest that men dominate public relations, and their preferred characteristics end up being those elements that permeate the media messages, regardless of instances where the lead character is a woman or the fact that feminist values of “loyalty, ethics, morality, [and] fairness” are advocated by female practitioners in real life (Vardeman-Winter and Place 333). Additionally, even though public relations is a feminised field, female practitioners struggle to break the glass ceiling, with male practitioners dominating executive positions and out-earning women (Pompper). Interestingly, in public relations, power is not just limited due to gender but also area of practice. In her ethnographic study of the New Zealand practice, Sissons found that practitioners who worked in consultancies were relatively powerless vis-à-vis their clients, and often this asymmetry negatively affected the practitioner’s decision-making. This implies that in stark contrast to the immoral, glamourous, and authoritative depiction of public relations women in television programmes, in reality they are mired by the struggles of a gendered occupation. Accordingly, they are not in fact in a position to have monstrous power over and impact on others. Therefore, one of the only elements the shows seem to capture and emphasise is that public relations is an occupation that specialises in image management; but what these shows contribute to is an ideology that women are expected to look and carry themselves in particular ways, ultimately constructing aesthetic standards that can diminish women’s power and self-esteem. Conclusion Miller’s archetypes may be over twenty years old, but the trend towards obsequious, manipulative, and cynical television characters remains. Although there have been identifiable shifts to loveable, yet shallow, public relations practitioners, such as Alexis Rose on Schitt’s Creek, the appeal of monstrous public relations practitioners remains. As Cohen puts it, monsters reveal to audiences “what a member of that society can become when those same dictates are rejected, when the authority of leaders or customs disintegrates and the subordination of individual to hierarchy is lost” (68). In other words, audiences enjoy watching the stories of metaphorical monsters because they exhibit the behaviours that are expected to be repressed in human beings; they depict what happens when the social norms of society are disturbed (Levina and Bui). At the very least, these media representations can act, much as monster narratives do, as a cautionary tale on how not to think and act to remain accepted as part of the in-group rather than being perceived as the Other. As Mittman and Hensel argue, society can learn much from monsters because monsters exist within human beings. According to Cohen, they offer meaning about the world and can teach audiences so they can learn, in this case, how to be better. Although the representations of public relations in television can offer insights into roles that are usually most effective when they are invisible (Chorazy and Harrington), the continued negative stereotypes of public relations practitioners can adversely impact on the industry if people are unaware of the practices of the occupation, because lacking a reference point limits audiences’ opportunities to critically evaluate the media representations. This will certainly harm the occupation by perpetuating existing negative stereotypes of charming and immoral practitioners, and perhaps add to its struggles with gendered identity and professional legitimacy. References Absolutely Fabulous. Created by Jennifer Saunders and Dawn French. 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Dennison, Mikela. An Analysis of Public Relations Discourse and Its Representations in Popular Culture. Masters Thesis. Auckland: Auckland University of Technology, 2012. Emily in Paris. Created by Darren Starr. Darren Starr Productions, 2020-present. Fawkes, Johanna. “A Jungian Conscience: Self-Awareness for Public Relations Practice.” Public Relations Review 41.5 (2015): 726-33. Fisher, David. “’Hit’ Jobs Case: PR Consultant Apologises and Promises Cash to Settle Defamation Case That Came from Dirty Politics”. New Zealand Herald, 3 Mar. 2021. 7 July 2021 <https://www.nzherald.co.nz/nz/hit-jobs-case-pr-consultant-apologises-and-promises-cash-to-settle-defamation-case-that-came-from-dirty-politics/C4KN5H42UUOCSXD7OFXGZ6YCEA/>. Fiske, John. Television Culture. Routledge, 2010. Fitch, Kate. “Promoting the Vampire Rights Amendment: Public Relations, Postfeminism and True Blood”. Public Relations Review 41.5 (2015): 607-14. Flack. Created by Oliver Lansley. 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Lambert, Cheryl Ann. “Post-Racial Public Relations on Primetime Television: How Scandal Represents Olivia Pope.” Public Relations Review 43.4 (2017): 750-54. Lambert, Cheryl Ann, and Candace White. “Feminization of the film? Occupational Roles of Public Relations Characters in Movies.” Public Relations Journal 6.4 (2012): 1-24. Levina, Marina, and Diem-My Bui. “Introduction”. In Monster Culture in the 21st Century. Eds. Marina Levina and Diem-My Bui. Bloomsbury, 2013. 1-13. McGurk, Stuart. “PR Drama Flack Might Be One of the Worst TV Shows Ever Made.” GQ Magazine 19 Feb. 2019. 7 July 2021 <https://www.gq-magazine.co.uk/article/flack-tv-show-review>. Miller, Karen S. “Public Relations in Film and Fiction: 1930 to 1995.” Journal of Public Relations Research 11.1 (1999): 3-28. Mittman, Asa Simon. “Introduction: The Impact of Monsters and Monster Studies.” The Ashgate Research Companion to Monsters and the Monstrous. Eds. Asa Simon Mittman and Peter Dendle. London: Ashgate, 2012. 1-14. 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Potts, Graham. ""I Want to Pump You Up!" Lance Armstrong, Alex Rodriguez, and the Biopolitics of Data- and Analogue-Flesh." M/C Journal 16, no. 6 (November 6, 2013). http://dx.doi.org/10.5204/mcj.726.

Full text
Abstract:
The copyrighting of digital augmentations (our data-flesh), their privatization and ownership by others from a vast distance that is simultaneously instantly telematically surmountable started simply enough. It was the initially innocuous corporatization of language and semiotics that started the deeper ontological flip, which placed the posthuman bits and parts over the posthuman that thought that it was running things. The posthumans in question, myself included, didn't help things much when, for instance, we all clicked an unthinking or unconcerned "yes" to Facebook® or Gmail®'s "terms and conditions of use" policies that gives them the real ownership and final say over those data based augments of sociality, speech, and memory. Today there is growing popular concern (or at least acknowledgement) over the surveillance of these augmentations by government, especially after the Edward Snowden NSA leaks. The same holds true for the dataveillance of data-flesh (i.e. Gmail® or Facebook® accounts) by private corporations for reasons of profit and/or at the behest of governments for reasons of "national security." While drawing a picture of this (bodily) state, of the intrusion through language of brands into our being and their coterminous policing of intelligible and iterative body boundaries and extensions, I want to address the next step in copyrighted augmentation, one that is current practice in professional sport, and part of the bourgeoning "anti-aging" industry, with rewriting of cellular structure and hormonal levels, for a price, on the open market. What I want to problematize is the contradiction between the rhetorical moralizing against upgrading the analogue-flesh, especially with respect to celebrity sports stars like Lance Armstrong and Alex Rodriquez, all the while the "anti-aging" industry does the same without censor. Indeed, it does so within the context of the contradictory social messaging and norms that our data-flesh and electric augmentations receive to constantly upgrade. I pose the question of the contradiction between the messages given to our analogue-flesh and data-flesh in order to examine the specific site of commentary on professional sports stars and their practices, but also to point to the ethical gap that exists not just for (legal) performance enhancing drugs (PED), but also to show the link to privatized and copyrighted genomic testing, the dataveillance of this information, and subsequent augmentations that may be undertaken because of the results. Copyrighted Language and Semiotics as Gateway Drug The corporatization of language and semiotics came about with an intrusion of exclusively held signs from the capitalist economy into language. This makes sense if one want to make surplus value greater: stamp a name onto something, especially a base commodity like a food product, and build up the name of that stamp, however one will, so that that name has perceived value in and of itself, and then charge as much as one can for it. Such is the story of the lack of real correlation between the price of Starbucks Coffee® and coffee as a commodity, set by Starbucks® on the basis of the cultural worth of the symbols and signs associated with it, rather than by what they pay for the labor and production costs prior to its branding. But what happens to these legally protected stamps once they start acting as more than just a sign and referent to a subsection of a specific commodity or thing? Once the stamp has worth and a life that is socially determined? What happens when these stamps get verbed, adjectived, and nouned? Naomi Klein, in the book that the New York Times referred to as a "movement bible" for the anti-globalization forces of the late 1990s said "logos, by the force of ubiquity, have become the closest thing we have to an international language, recognized and understood in many more places than English" (xxxvi). But there is an inherent built-in tension of copyrighted language and semiotics that illustrates the coterminous problems with data- and analogue-flesh augments. "We have almost two centuries' worth of brand-name history under our collective belt, coalescing to create a sort of global pop-cultural Morse code. But there is just one catch: while we may all have the code implanted in our brains, we're not really allowed to use it" (Klein 176). Companies want their "brands to be the air you breathe in - but don't dare exhale" or otherwise try to engage in a two-way dialogue that alters the intended meaning (Klein 182). Private signs power first-world and BRIC capitalism, language, and bodies. I do not have a coffee in the morning; I have Starbucks®. I do not speak on a cellular phone; I speak iPhone®. I am not using my computer right now; I am writing MacBook Air®. I do not look something up, search it, or research it; I Google® it. Klein was writing before the everyday uptake of sophisticated miniaturized and mobile computing and communication devices. With the digitalization of our senses and electronic limbs this viral invasion of language became material, effecting both our data- and analogue-flesh. The trajectory? First we used it; then we wore it as culturally and socially demarcating clothing; and finally we no longer used copyrighted speech terms: it became an always-present augmentation, an adjective to the lexicon body of language, and thereby out of democratic semiotic control. Today Twitter® is our (140 character limited) medium of speech. Skype® is our sense of sight, the way we have "real" face-to-face communication. Yelp® has extended our sense of taste and smell through restaurant reviews. The iPhone® is our sense of hearing. And OkCupid® and/or Grindr® and other sites and apps have become the skin of our sexual organs (and the site where they first meet). Today, love at first sight happens through .jpeg extensions; our first sexual experience ranked on a scale of risk determined by the type of video feed file format used: was it "protected" enough to stop its "spread"? In this sense the corporatization of language and semiotics acted as the gateway drug to corporatized digital-flesh; from use of something that is external to us to an augmentation that is part of us and indeed may be in excess of us or any notion of a singular liberal subject.Replacement of Analogue-Flesh? Arguably, this could be viewed as the coming to be of the full replacement of the fleshy analogue body by what are, or started as digital augmentations. Is this what Marshall McLuhan meant when he spoke of the "electronic exteriorization of the central nervous system" through the growing complexity of our "electric extensions"? McLuhan's work that spoke of the "global village" enabled by new technologies is usually read as a euphoric celebration of the utopic possibilities of interconnectivity. What these misreadings overlook is the darker side of his thought, where the "cultural probe" picks up the warning signals of the change to come, so that a Christian inspired project, a cultural Noah’s Ark, can be created to save the past from the future to come (Coupland). Jean Baudrillard, Paul Virilio, and Guy Debord have analyzed this replacement of the real and the changes to the relations between people—one I am arguing is branded/restricted—by offering us the terms simulacrum (Baudrillard), substitution (Virilio), and spectacle (Debord). The commonality which links Baudrillard and Virilio, but not Debord, is that the former two do not explicitly situate their critique as being within the loss of the real that they then describe. Baudrillard expresses that he can have a 'cool detachment' from his subject (Forget Foucault/Forget Baudrillard), while Virilio's is a Catholic moralist's cry lamenting the disappearance of the heterogeneous experiential dimensions in transit along the various axes of space and time. What differentiates Debord is that he had no qualms positioning his own person and his text, The Society of the Spectacle (SotS), as within its own subject matter - a critique that is limited, and acknowledged as such, by the blindness of its own inescapable horizon.This Revolt Will Be Copyrighted Yet today the analogue - at the least - performs a revolt in or possibly in excess of the spectacle that seeks its containment. How and at what site is the revolt by the analogue-flesh most viewable? Ironically, in the actions of celebrity professional sports stars and the Celebrity Class in general. Today it revolts against copyrighted data-flesh with copyrighted analogue-flesh. This is even the case when the specific site of contestation is (at least the illusion of) immortality, where the runaway digital always felt it held the trump card. A regimen of Human Growth Hormone (HGH) and other PEDs purports to do the same thing, if not better, at the cellular level, than the endless youth paraded in the unaging photo employed by the Facebook or Grindr Bodies®. But with the everyday use and popularization of drugs and enhancement supplements like HGH and related PEDs there is something more fundamental at play than the economic juggernaut that is the Body Beautiful; more than fleshy jealousy of Photoshopped® electronic skins. This drug use represents the logical extension of the ethics that drive our tech-wired lives. We are told daily to upgrade: our sexual organs (OkCupid® or Grindr®) for a better, more accurate match; our memory (Google® services) for largeness and safe portability; and our hearing and sight (iPhone® or Skype®) for increase connectivity, engaging the "real" (that we have lost). These upgrades are controlled and copyrighted, but that which grows the economy is an especially favored moral act in an age of austerity. Why should it be surprising, then, that with the economic backing of key players of Google®—kingpin of the global for-profit dataveillance racket—that for $99.95 23andMe® will send one a home DNA test kit, which once returned will be analyzed for genetic issues, with a personalized web-interface, including "featured links." Analogue-flesh fights back with willing copyrighted dataveillance of its genetic code. The test and the personalized results allow for augmentations of the Angelina Jolie type: private testing for genetic markers, a double mastectomy provided by private healthcare, followed by copyrighted replacement flesh. This is where we find the biopolitics of data- and analogue-flesh, lead forth, in an ironic turn, by the Celebrity Class, whom depend for their income on the lives of their posthuman bodies. This is a complete reversal of the course Debord charts out for them: The celebrity, the spectacular representation of a living human being, embodies this banality by embodying the image of a possible role. Being a star means specializing in the seemingly lived; the star is the object of identification with the shallow seeming life that has to compensate for the fragmented productive specializations which are actually lived. (SotS) While the electronic global village was to have left the flesh-and-blood as waste, today there is resistance by the analogue from where we would least expect it - attempts to catch up and replant itself as ontologically prior to the digital through legal medical supplementation; to make the posthuman the posthuman. We find the Celebrity Class at the forefront of the resistance, of making our posthuman bodies as controlled augmentations of a posthuman. But there is a definite contradiction as well, specifically in the press coverage of professional sports. The axiomatic ethical and moral sentiment of our age to always upgrade data-flesh and analogue-flesh is contradicted in professional sports by the recent suspensions of Lance Armstrong and Alex Rodriguez and the political and pundit critical commentary on their actions. Nancy Reagan to the Curbside: An Argument for Lance Armstrong and Alex Rodriguez's "Just Say Yes to Drugs" Campaign Probably to the complete shock of most of my family, friends, students, and former lovers who may be reading this, I actually follow sports reporting with great detail and have done so for years. That I never speak of any sports in my everyday interactions, haven't played a team or individual sport since I could speak (and thereby use my voice to inform my parents that I was refusing to participate), and even decline amateur or minor league play, like throwing a ball of any kind at a family BBQ, leaves me to, like Judith Butler, "give an account of oneself." And this accounting for my sports addiction is not incidental or insignificant with respect either to how the posthuman present can move from a state of posthumanism to one of posthumanism, nor my specific interpellation into (and excess) in either of those worlds. Recognizing that I will not overcome my addiction without admitting my problem, this paper is thus a first-step public acknowledgement: I have been seeing "Dr. C" for a period of three years, and together, through weekly appointments, we have been working through this issue of mine. (Now for the sake of avoiding the cycle of lying that often accompanies addiction I should probably add that Dr. C is a chiropractor who I see for back and nerve damage issues, and the talk therapy portion, a safe space to deal with the sports addiction, was an organic outgrowth of the original therapy structure). My data-flesh that had me wired in and sitting all the time had done havoc to the analogue-flesh. My copyrighted augments were demanding that I do something to remedy a situation where I was unable to be sitting and wired in all the time. Part of the treatment involved the insertion of many acupuncture needles in various parts of my body, and then having an electric current run through them for a sustained period of time. Ironically, as it was the wired augmentations that demanded this, due to my immobility at this time - one doesn't move with acupuncture needles deep within the body - I was forced away from my devices and into unmediated conversation with Dr. C about sports, celebrity sports stars, and the recent (argued) infractions by Armstrong and Rodriguez. Now I say "argued" because in the first place are what A-Rod and Armstrong did, or are accused of doing, the use of PEDs, HGH, and all the rest (cf. Lupica; Thompson, and Vinton) really a crime? Are they on their way, or are there real threats of jail and criminal prosecution? And in the most important sense, and despite all the rhetoric, are they really going against prevailing social norms with respect to medical enhancement? No, no, and no. What is peculiar about the "witch-hunt" of A-Rod and Armstrong - their words - is that we are undertaking it in the first place, while high-end boutique medical clinics (and internet pharmacies) offer the same treatment for analogue-flesh. Fixes for the human in posthuman; ways of keeping the human up to speed; arguably the moral equivalent, if done so with free will, of upgrading the software for ones iOS device. If the critiques of Baudrillard and Virilio are right, we seem to find nothing wrong with crippling our physical bodies and social skills by living through computers and telematic technologies, and obsess over the next upgrade that will make us (more) faster and quicker (than the other or others), while we righteously deny the same process to the flesh for those who, in Debord's description, are the most complicit in the spectacle, to the supposedly most posthuman of us - those that have become pure spectacle (Debord), pure simulation (Baudrillard), a total substitution (Virilio). But it seems that celebrities, and sports celebrities in specific haven't gone along for the ride of never-ending play of their own signifiers at the expense of doing away with the real; they were not, in Debord's words, content with "specializing in the seemingly lived"; they wanted, conversely, to specialize in the most maximally lived flesh, right down to cellular regeneration towards genetic youth, which is the strongest claim in favor of taking HGH. It looks like they were prepared to, in the case of Armstrong, engage in the "most sophisticated, professionalized and successful doping program that sport has ever seen" in the name of the flesh (BBC). But a doping program that can, for the most part, be legally obtained as treatment, and in the same city as A-Rod plays in and is now suspended for his "crimes" to boot (NY Vitality). This total incongruence between what is desired, sought, and obtained legally by members of their socioeconomic class, and many classes below as well, and is a direct outgrowth of the moral and ethical axiomatic of the day is why A-Rod and Armstrong are so bemused, indignant, and angry, if not in a state of outright denial that they did anything that was wrong, even while they admit, explicitly, that yes, they did what they are accused of doing: taking the drugs. Perhaps another way is needed to look at the unprecedentedly "harsh" and "long" sentences of punishment handed out to A-Rod and Armstrong. The posthuman governing bodies of the sports of the society of the spectacle in question realize that their spectacle machines are being pushed back at. A real threat because it goes with the grain of where the rest of us, or those that can buy in at the moment, are going. And this is where the talk therapy for my sports addiction with Dr. C falls into the story. I realized that the electrified needles were telling me that I too should put the posthuman back in control of my damaged flesh; engage in a (medically copyrighted) piece of performance philosophy and offset some of the areas of possible risk that through restricted techne 23andMe® had (arguably) found. Dr. C and I were peeved with A-Rod and Armstrong not for what they did, but what they didn't tell us. We wanted better details than half-baked admissions of moral culpability. We wanted exact details on what they'd done to keep up to their digital-flesh. Their media bodies were cultural probes, full in view, while their flesh bodies, priceless lab rats, are hidden from view (and likely to remain so due to ongoing litigation). These were, after all, big money cover-ups of (likely) the peak of posthuman science, and the lab results are now hidden behind an army of sports federations lawyers, and agents (and A-Rod's own army since he still plays); posthuman progress covered up by posthuman rules, sages, and agents of manipulation. Massive posthuman economies of spectacle, simulation, or substitution of the real putting as much force as they can bare on resurgent posthuman flesh - a celebrity flesh those economies, posthuman economies, want to see as utterly passive like Debord, but whose actions are showing unexpected posthuman alignment with the flesh. Why are the centers of posthumanist power concerned? Because once one sees that A-Rod and Armstrong did it, once one sees that others are doing the same legally without a fuss being made, then one can see that one can do the same; make flesh-and-blood keep up, or regrow and become more organically youthful, while OkCupid® or Grindr® data-flesh gets stuck with the now lagging Photoshopped® touchups. Which just adds to my desire to get "pumped up"; add a little of A-Rod and Armstrong's concoction to my own routine; and one of a long list of reasons to throw Nancy Reagan under the bus: to "just say yes to drugs." A desire that is tempered by the recognition that the current limits of intelligibility and iteration of subjects, the work of defining the bodies that matter that is now set by copyrighted language and copyrighted electric extensions is only being challenged within this society of the spectacle by an act that may give a feeling of unease for cause. This is because it is copyrighted genetic testing and its dataveillance and manipulation through copyrighted medical technology - the various branded PEDs, HGH treatments, and their providers - that is the tool through which the flesh enacts this biopolitical "rebellion."References Baudrillard, Jean. Forget Foucault/Forget Baudrillard. Trans Nicole Dufresne. Los Angeles: Semiotext(e), 2007. ————. Simulations. Trans. Paul Foss, Paul Patton and Philip Beitchman. Cambridge: Semiotext(e), 1983. BBC. "Lance Armstong: Usada Report Labels Him 'a Serial Cheat.'" BBC Online 11 Oct. 2012. 1 Dec. 2013 ‹http://www.bbc.co.uk/sport/0/cycling/19903716›. Butler, Judith. Giving an Account of Oneself. New York: Fordham University Press, 2005. Clark, Taylor. Starbucked: A Double Tall Tale of Caffeine, Commerce, and Culture. New York: Back Bay, 2008. Coupland, Douglas. Marshall McLuhan. Toronto: Penguin Books, 2009. Debord, Guy. Society of the Spectacle. Detroit: Black & Red: 1977. Klein, Naomi. No Logo: Taking Aim at the Brand Bullies. Toronto: Knopf Canada, 1999. Lupica, Mike. "Alex Rodriguez Beginning to Look a Lot like Lance Armstrong." NY Daily News. 6 Oct. 2013. 1 Dec. 2013 ‹http://www.nydailynews.com/sports/baseball/lupica-a-rod-tour-de-lance-article-1.1477544›. McLuhan, Marshall. Understanding Media: The Extensions of Man. New York: McGraw-Hill Book Company, 1964. NY Vitality. "Testosterone Treatment." NY Vitality. 1 Dec. 2013 ‹http://vitalityhrt.com/hgh.html›. Thompson, Teri, and Nathaniel Vinton. "What Does Alex Rodriguez Hope to Accomplish by Following Lance Armstrong's Legal Blueprint?" NY Daily News 5 Oct. 2013. 1 Dec. 2013 ‹http://www.nydailynews.com/sports/i-team/a-rod-hope-accomplish-lance-blueprint-article-1.1477280›. Virilio, Paul. Speed and Politics. Trans. Mark Polizzotti. New York: Semiotext(e), 1986.
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42

Croydon, Silvia. "In It Together." Voices in Bioethics 8 (March 17, 2022). http://dx.doi.org/10.52214/vib.v8i.9426.

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Photo by Sangharsh Lohakare on Unsplash ABSTRACT The public should debate the ethical and social challenges arising from heritable human genome editing (HHGE). The notorious case involving He Jiankui may have led to the disfavor of gene editing and a precautionary approach. While the de facto global moratorium on HHGE is clearly justified considering our current inability to implement it safely and effectively, the difficult ethical considerations should be addressed prior to the ability to initiate widespread HHGE. This piece argues that prospective patients and other members of society beyond the scientific community must be included in the conversation. It emphasizes the potential role of those not directly participating in HHGE science, calling the broader academic community not simply to wait for scientists’ results and only afterward react. Pointing to key historical examples, I contend that scientific progress is intrinsically linked with the surrounding societal discussion and that it is not only scientists who can influence where the HHGE story ends. INTRODUCTION l. Rogue Scientists Chinese biophysicist He Jiankui announced the world’s first genetically modified babies in 2018. Naturally, the treatment aroused the attention of the world’s media, which focused on He’s reckless actions. Indeed, in setting up and carrying out the procedure in question, he flouted norms of good scientific practice on a range of levels—errors paid with time in prison. Since the He controversy, few scientists have aggressively approached heritable human genome editing (HHGE) and challenged the current research norms. The most outspoken exception is the Russian molecular biologist Denis Rebrikov of the Pirogov Russian National Research Medical University. He publicly declared his intention to apply clustered regularly interspaced short palindromic repeats (CRISPR) to embryos to help couples avoid passing serious medical conditions to their children. However, Rebrikov met fierce opposition both inside and beyond Russia and, with leading CRISPR scientists and bioethicists abroad describing him as a “cowboy” who had “weak data” and was trying to “grab some attention.”[1] So far, Rebrikov’s plans have failed to come to fruition. Although there are 126 entries listed in a registry of HHGE research recently created by the World Health Organization (WHO),[2],[3] it seems that clinical HHGE has been paused for the time being. ll. Steering the Conversation A section of the scientific community has been trying to steer the ethical debate on HHGE away from the actions of rogue scientists and back to an issue that is central to the matter—the interests of patients. The majority would agree that the most compelling potential application of germline genome editing is for the prevention of devastating genetic conditions, for example, when both parents carry Huntington’s disease, for which “genome editing offers the only prospect of bearing a healthy, genetically related child.”[4] Despite such justification for scientists to continue pursuing research in the area, there has been a notable reticence in the wider academic community regarding making the ethical case for HHGE and clarifying in which medical situations such a technique might be reasonably applied. Even among those who recognize that the HHGE cases' controversies should not be a reason for panic over designer babies, some believe that starting the ethical debate is premature. A key part of the argument is that the current technological and scientific knowledge available is far from ready to deliver on treatments. A similar stance preventing debate in the wider society is that “difficult questions” about cost, accessibility, and social justice remain.[5] Whether intended or not, the implication is that the position of wider society in the HHGE story should be a reactive one, namely waiting to see what the scientists throw at them and then dealing with it. I argue that there is not only an immediate need for broader academic and societal input on the ethical and social aspects of the HHGE debate but that there is a deep symbiosis between scientific progress and its surroundings, whereby science both shapes and is shaped by the societal environment in which it takes place. The WHO published a position paper, recommendations, and a framework for governance. The framework for governance describes global standards for the governance and oversight of HHGE.[6] The position paper emphasized the importance of global and inclusive dialogue,[7] and many other boards have also called for broad public engagement.[8] It is imperative that WHO’s governance framework meets everyone’s needs. After all, as with any medical treatment, it is not the scientist who developed the treatment or the doctor who delivers it that is most important– that honor falls to the patient. In the case of HHGE, the beneficiaries include those members of society who hope to reproduce. Yet HHGE has the potential to impact society. We all should have an opportunity to be a part of world-changing decisions that lead to the creation are made and feel a responsibility to participate. lll. Shutting Down the Academic Debate At the 30th Annual Conference of the Japanese Association for Bioethics, which took place in late 2018 after He’s experiment, the discussion about HHGE was shut down quickly. Notwithstanding the understandable issues raised with He’s case, one participant after another stood up to voice support for an outright and complete ban on the use of CRISPR.[9] The ban was based on the grounds that editing the human genome would result in a cascade of unforeseen and irreversible consequences for future generations. One participant forcefully argued that “the deoxyribose nucleic acid (DNA) rubicon should never be crossed for above all, it was deeply immoral to do so when there was no way of obtaining the consent of those who would actually stand affected—our descendants.”[10] Another saw it as putting humanity on a slippery slope toward enhancements, and some feared the catastrophic mistakes that might result from their use.[11] While the above event provides just one snapshot of the debate that was taking place around the world at the time, it captures the strong reservations in the scientific community. It is a common view, not only in Japan, that the human genome is something sacred, a relic handed down from generations, that we ought to treasure and preserve. In support of such a view, religious and other more pragmatic reasons are offered. For example, some may fear the disasters that might befall us if we choose to intervene in the process through which we pass our genetic code from one generation to another. Such arguments are certainly still at the heart of the ethical debate, but the foundations upon which they are built are by no means universally accepted. Stanford University bioethicist Henry Greely writes, “the human germline genome” does not exist; instead, each of us has a unique genome.[12] Greely argues that HHGE is no different from the changes our genomes have undergone through numerous medical interventions. For example, synthetic insulin has increased the number of people with DNA variations that lead to diabetes. Those with this condition would have died as a child in the past. However, now they live long enough to be able to reproduce. Similarly, the transition from hunting to farming centuries ago resulted in a greater number of copies in our gene pool of starch-digesting genes. Yet Greely suggested that, practically, HHGE is “not very useful in the near- to midterm” (by which he means “the next several decades”)[13] “mainly because other technologies can attain almost all the important hoped-for benefits of [HHGE], often with lower risk,” citing embryo selection and somatic gene editing as two alternative options. Greely argued that applying HHGE for enhancement beyond disease prevention and is currently not a realistic option because we lack the necessary knowledge. In Greely’s opinion, “how worried should we be [about HHGE]…? A bit, but not very and not about much.”[14] Greely’s assertions that other scientific debates should take precedence and that the concerns are not ripe for debate yet are concerning. lV. Why Shutting Down the Debate Might Not be a Good Idea First, the timeframe described by Greely seems somewhat out of line with that described by leading scientists. As far back as 2018, at the same Summit where He made his revelations, George Q. Daley stressed that HHGE is scientifically feasible here and that the ethical considerations can no longer be put off: “…a number of groups have applied gene editing now to human embryos in the context of in vitro fertilization and attempting to determine variations of a protocol that would enhance the fidelity and reduce mosaicism. I think there has been an emerging consensus that the off-target problem is manageable, and in some cases even infinitesimal. There are some interesting proofs of principles, like diseases such as beta-thalassemia that could potentially be approached with this strategy.”[15] It would also be possible to challenge Greely on various other aspects. One of which would be the number of cases to which HHGE would be relevant and the kinds of moral allowances that might be made, and each case concludes that more urgency is required in the ethical debate. Greely suggests that most people can use preimplantation genetic testing (PGD), which is the embryo selection process, and that perhaps HHGE could apply to couples where both have the same autosomal recessive gene.[16] Greely rules out considering HHGE in cases where PGD is applicable. Greely concedes PGD does not already represent the answer on this topic, as it often fails to provide couples with enough healthy embryos to transfer. As a resolution to this issue, he points to the creation of eggs using induced pluripotent stem cell (iPSC) techniques, whereby eggs can potentially be created from other cells.[17] However, given the extremely limited success of iPSCs in the clinical arena to date, in vitro gametogenesis is a highly speculative solution. Certainly, the progress of iPSC research is not such a safe bet that placing all our hopes on it at the expense of HHGE techniques is currently justified. (Also, it should be noted that making eggs using the iPSC technique is hardly an ethical problem-free area itself.) In summary, the cases of couples looking to conceive that Greely rules out by pointing to PGD should be kept on the HHGE table, as various other scholars have suggested.[18] Many of us debating HHGE are not scientists, so the best we can do is draw from the information we glean from those more technically capable. As a society, we are not just passive observers of science; we should have influence over decisions that impact society. Indeed, even if the available science is not yet at a place where we should be worried about large-scale ethical and social concerns, the story will continue to unfold in the future. While Greely is happy to see the human race “muddle through” the ethical challenges of scientific breakthroughs, such a position fails to recognize that society at large is far from powerless. V. Society Influencing Scientific Progress There are some notable examples of society’s impact on scientific progress. For example, political policies led to the development of nuclear technology for war and strategic deterrence, despite societal objections seen through demonstrations of people protesting using the slogan “no nukes.” Furthermore, the Bush administration drastically limited the use of embryonic stem cells in the 2000s due to a strong religious and cultural influence on policy.[19] Societal debate potentially serves as a powerful factor in guiding science. Where societal acceptance is ambiguous, science tends to operate on its own. But where science would impact life’s fundamental issues like war, how embryos should be valued, or the end of life, society should weigh in and influence the role of science. Societal views on the current global moratorium on HHGE could lead to a ban, as has been advocated.[20] On the other hand, societal views that value HHGE as a way to expand reproductive autonomy may justify permitting its use. Opening an ethics debate about it would enable scientists to pursue technologies that society deems justifiable as well as set limits for where they should stop. Making this process more difficult, the He affair has clearly colored public discourse on HHGE in a way that inhibits debate. In Japan, a sequence of questionnaires in 2016, 2018, and 2019 showed that the widely publicized HHGE scandal led to a significant decline in the acceptance of genome editing technology in general, particularly for human reproduction. Specifically, the surveys revealed a stark rise in disapproval of the technology’s use on fertilized human eggs—from 12 percent in 2018 to 29 percent in 2019.[21] The three scientists that conducted these surveys suggested that “the news of the twin babies in China had a substantial influence on the Japanese public,” damaging the reputation of HHGE.[22] It seems likely that the public distaste for HHGE was prompted by He’s research rather than considerations about the scientific potential of HHGE The change in public opinion may also make politicians and scientists more hesitant when it comes to taking the lead in the HHGE debate. Ultimately, this can restrict the public discussion of the central ethical challenges of the technology and hinder efforts to determine whether there is a responsible path forward other than an outright ban. Stressing the importance of the issue again to potential patients and failing to engage further with the HHGE debate is surely not something society should allow. While there are many important ongoing debates about genetics, like biohacking and DIY hobbyists, HHGE deserves attention as well. In fact, attention to the ethics of HHGE should help — more awareness of how these tools can be applied and what germline genome editing is will make people more alert to the existing danger and better understand how to mitigate it. Perhaps more importantly, a clear message from society to researchers about what objectives are reasonable to pursue regarding the HHGE technologies will facilitate good science. Having a publicly determined criterion would allow scientists to not live in fear that they might be blacklisted for seeking progress in grey areas and instead confidently chase progress where it is allowed. Vl. What Now? HHGE is here (or will be soon) and brings many ethical and social challenges. However, the challenges should not be left to individual scientists and couples in desperate situations to manage alone. Moving toward how these challenges can be met practically, it is helpful to draw a parallel with the issue of implementing human rights. In the early 21st century, political philosopher Michael Freeman of the University of Essex lamented that implementing human rights had been left to lawyers. Although legal experts were clearly essential in putting together the global human rights framework, Freeman’s concern was that they were not best placed to understand implementing human rights in various contexts. Setting out a broader, interdisciplinary approach, he called for social scientists to tackle these difficult questions, ultimately moving human rights forward around the world. Similarly, in medical technology like HHGE, scientists are crucial to the story, but at the same time, they are not trained to deal with all the accompanying challenges. Bioethicists are also important, clarifying the arguments that society needs to resolve. There is a need for even wider input from across the scholarly community. For instance, as with human rights, international and domestic regulation is required, and clearly, the legal community has a role here. Moreover, as described by Freeman, since all law is political in its creation and has impacts across society, political scientists and sociologists can provide impactful input. CONCLUSION We are in it together, and we have roles to play in the discussion of HHGE. Societal discourse does not always trail the scientific reality, but rather, it can condition the path that science will follow. Given the importance of what is at stake, not only for the potential patients, but for humanity, we should not leave the HHGE debate only to scientists, and we should not leave it until later. - [1] Cohen J. “Embattled Russian scientist sharpens plans to create gene-edited babies,” Science, 21 Oct. 2019. doi:10.1126/science.aaz9337. [2] World Health Organization. “WHO issues new recommendations on human genome editing for the advancement of public health,” News release, 12 July 2021, www.who.int/news/item/12-07-2021-who-issues-new-recommendations-on-human-genome-editing-for-the-advancement-of-public-health. [3] World Health Organization. “Human Genome Editing Registry,” https://www.who.int/groups/expert-advisory-committee-on-developing-global-standards-for-governance-and-oversight-of-human-genome-editing/registry. [4] Daley GQ, Lovell-Badge R, and Steffann J. “After the Storm–A Responsible Path for Genome Editing,” New England Journal of Medicine 380, no. 10 (2019): 897-9. doi:10.1056/NEJMp1900504. [5] Daley GQ, Lovell-Badge R, and Steffann J. “After the Storm–A Responsible Path for Genome Editing,” New England Journal of Medicine 380, no. 10 (2019): 897-9. doi:10.1056/NEJMp1900504 [6] World Health Organization. “WHO issues new recommendations on human genome editing for the advancement of public health,” News Release, July 12, 2021, www.who.int/news/item/12-07-2021-who-issues-new-recommendations-on-human-genome-editing-for-the-advancement-of-public-health. [7] WHO 2021. Human Genome Editing: Position Paper, WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. [8] Daley GQ, Lovell-Badge R, and Steffann J. “After the Storm–A Responsible Path for Genome Editing,” New England Journal of Medicine 380, no. 10 (2019): 897-9. doi:10.1056/NEJMp1900504. [9] 30th Annual Conference of the Japanese Association for Bioethics, 8-9 Dec. 2018, Kyoto Prefectural University, Kyoto. [10] 30th Annual Conference of the Japanese Association for Bioethics, 8-9 Dec. 2018, Kyoto Prefectural University, Kyoto. [11] 30th Annual Conference of the Japanese Association for Bioethics, 8-9 Dec. 2018, Kyoto Prefectural University, Kyoto. [12] Greely HT. “Why the Panic Over ‘Designer Babies’ Is the Wrong Worry,” LeapsMag, 30 Oct. 2017, leapsmag.com/much-ado-about-nothing-much-crispr-for-human-embryo-editing; Greely HT. “CRISPR’d babies: human germline genome editing in the ‘He Jiankui Affair’,” Journal of Law and the Biosciences 2019; 6(1): 111–83. doi: 10.1093/jlb/lsz010; Greely HT. CRISPR People: The Science and Ethics of Editing Humans (Massachusetts: Massachusetts Institute of Technology Press, 2021). [13] Greely HT. “Why the Panic Over ‘Designer Babies’ Is the Wrong Worry,” LeapsMag, 30 Oct. 2017, leapsmag.com/much-ado-about-nothing-much-crispr-for-human-embryo-editing. [14] Greely HT. “Why the Panic Over ‘Designer Babies’ Is the Wrong Worry,” LeapsMag, 30 Oct. 2017, leapsmag.com/much-ado-about-nothing-much-crispr-for-human-embryo-editing. [15] Daley, G. (n.d.). Genome-editing-pathways to Translation. Transcript of the Human-Genome Editing Summit 2018 Hong Kong. Retrieved March 17, 2022, from https://diyhpl.us/wiki/transcripts/human-genome-editing-summit/2018-hong-kong/george-daley-genome-editing-pathways-to-translation/ [16] Greely HT. “CRISPR’d babies: human germline genome editing in the ‘He Jiankui affair’,” Journal of Law and the Biosciences 2019: 6(1): 111–83. doi:10.1093/jlb/lsz010. [17] Greely HT. CRISPR People: The Science and Ethics of Editing Humans (Massachusetts: Massachusetts Institute of Technology Press, 2021). [18] Rasnich R. “Germline genome editing versus preimplantation genetic diagnosis: Is there a case in favour of germline interventions?.” Bioethics 2020; 34(1): 60–9. [19] Murugan, Varnee. “Embryonic stem cell research: a decade of debate from Bush to Obama.” The Yale journal of biology and medicine vol. 82,3 (2009): 101-3. [20] Lander E, Baylis F, Zhang F, et al. “Adopt a moratorium on heritable genome editing,” Nature 2019; 567(7747): 165–8. pmid:30867611. [21] Watanabe D, Sato Y, Tsuda M, and Ohsawa R. Increased awareness and decreased acceptance of genome-editing technology: The impact of the Chinese twin babies. PLoS ONE 2000; 15(1): 1-13. doi:10.1371/journal.pone.0238128. [22] Watanabe D, Sato Y, Tsuda M, and Ohsawa R. Increased awareness and decreased acceptance of genome-editing technology: The impact of the Chinese twin babies. PLoS ONE 2000; 15(1): 1-13. doi:10.1371/journal.pone.0238128.
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43

Mantle, Martin. "“Have You Tried Not Being a Mutant?”." M/C Journal 10, no. 5 (October 1, 2007). http://dx.doi.org/10.5204/mcj.2712.

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There is an expression, in recent Marvel superhero films, of a social anxiety about genetic science that, in part, replaces the social anxieties about nuclear weapons that can be detected in the comic books on which these films are based (Rutherford). Much of the analysis of superhero comics – and the films on which they are based – has focussed its attention on the anxieties contained within them about gender, sexuality, race, politics, and the nation. Surprisingly little direct critique is applied to the most obvious point of difference within those texts, namely the acquisition, display, and use of extra-ordinary abilities. These superhero films represent some of the ways that audiences come to understand genetics. I am interested in this essay in considering how the representation of genetic mutation, as an error in a bio-chemical code, is a key narrative device. Moreover, mutation is central to the way the films explore the social exclusion of characters who acquire super-abilities. My contention is that, in these Marvel comic films, extra-ordinary ability, and the anxieties expressed about those abilities, parallels some of the social and cultural beliefs about the disabled body. The impaired body thus becomes a larger trope for any deviation from the “normal” body and gives rise to the anxieties about deviation and deviance explored in these films. Impairment and illness have historically been represented as either a blessing or a curse – the source of revelation and discovery, or the site of ignominy. As Western culture developed, the confluence of Greek and Judeo-Christian stories about original sin and inherited punishment for parental digression resulted in the entrenchment of beliefs about bent and broken bodies as the locus of moral questions (and answers) about the abilities and use of the human body (Sontag 47). I want to explore, firstly, in the film adaptations of the Marvel comics X-Men, Spiderman, Fantastic Four, and The Hulk, the representation of changes to the body as the effect of invisible bio-chemical states and processes. It has been impossible to see DNA, whether with the human eye or with technical aid; the science of genetics is largely based on inference from other observations. In these superhero films, the graphic display of DNA and genetic restructuring is strikingly large. This overemphasis suggests both that the genetic is a key narrative impetus of the films and that there is something uncertain or disturbing about genetic science. One such concern about genetic science is identifying the sources of oppression that might underlie the, at times understandable, desire to eliminate disease and congenital defect through changes to the genetic code or elimination of genetic error. As Adrienne Asch states, this urge to eliminate disease and impairment is problematic: Why should it be acceptable to avoid some characteristics and not others? How can the society make lists of acceptable and unacceptable tests and still maintain that only disabling traits, and not people who live with those traits, are to be avoided? (339) Asch’s questioning ends with the return to the moral concerns that have always circulated around the body, and in particular a body that deviates from a norm. The maxim “hate the sin, not the sinner” is replaced by “eradicate the impairment, not the impaired”: it is some kind of lack of effort or resourcefulness on the part of the impaired that is detectable in the presence of the impairment. This replacement of sin by science is yet another example of the trace of the body as the site of moral arguments. As Bryan Turner argues, categories of disease, and by association impairment, are intrinsic to the political discourse of Western societies about otherness and exclusion (Turner 216). It is not surprising then, that characters that experience physical changes caused by genetic mutation may take on for themselves the social shame that is part of the exclusion process. As genetic science has increasingly infiltrated the popular imagination and thus finds expression in cinema, so too has this concern of shame and guilt become key to the narrative tension of films that link changes in the genetic code to the acquisition of super-ability. In the X-Men franchise, the young female character Rogue (Anna Paquin), acquires the ability to absorb another’s life force (and abilities), and she seeks to have her genetic code resequenced in order to be able to touch others, and thus by implication have a “normal” life. In X2 (Bryan Singer, 2003), Rogue’s boyfriend, Iceman (Shawn Ashmore), who has been largely excluded from her touch, returns home with other mutants. After having hidden his mutant abilities from his family, he finally confesses to them the truth about himself. His shocked mother turns to him and asks: “Have you tried not being a mutant?” Whilst this moment has been read as an expression of anxiety about homosexuality (“Pop Culture: Out Is In”; Vary), it also marks a wider social concern about otherness, including disability, and its attendant social exclusion. Moreover, this moment reasserts the paradigm of effort that underlies anxieties about deviations from the norm: Iceman could have been normal if only he had tried harder, had a different girlfriend, remained at home, sought more knowledge, or had better counsel. Science, and more specifically genetic science, is suggested in many of these films as the site of bad counsel. The narratives of these superhero stories, almost without exception, begin or hinge on some kind of mistake by scientists – the escaped spider, the accident in the laboratory, the experiment that gets out of control. The classic image of the mad scientist or Doctor Frankenstein type, locked away in his laboratory is reflected in the various scenes in all these films, in which the scientists are separated from wider society. In Fantastic 4 (Tim Story, 2005), the villain, Dr Von Doom (Julian McMahon), is located at the top of a large multi-story building, as too are the heroes. Their separation from the rest of society is made even more dramatic by placing the site of their exposure to cosmic radiation, the source of the genetic mutation, in a space station that is empty of anyone else except the five main characters whose bodies will be altered. In Spiderman (Sam Raimi, 2002), the villain is a scientist whose experiments are kept secret by the military, emphasising the danger inherent in his work. The mad-scientist imagery dominates the representation of Bruce Bannor’s father in Hulk (Ang Lee, 2003), whose experiments have altered his genetic code, and that alteration in genetic structure has subsequently been passed onto his son. The Fantastic 4 storyline returns several times to the link between genetic mutation and the exposure to cosmic radiation. Indeed, it is made explicit that human existence – and by implication the human body and abilities – is predicated on this cosmic radiation as the source of transformations that formed the human genetic code. The science of early biology thus posits this cosmic radiation as the source of what is “normal,” and it is this appeal to the cosmos – derived from the Greek kosmos meaning “order” – that provides, in part, the basis on which to value the current human genetic code. This link to the cosmic is also made in the opening sequence of X-Men in which the following voice-over is heard as we see a ball of light form. This light show is both a reminder of the Big Bang (the supposed beginning of the universe which unleased vast amounts of radiation) and the intertwining of chromosomes seen inside biological nuclei: Mutation, it is the key to our evolution. It has enabled us to evolve from a single celled organism to the dominant species on the planet. This process is slow, normally taking thousands and thousands of years. But every few hundred millennia evolution leaps forward. Whilst mutation may be key to human evolution and the basis for the dramatic narratives of these superhero films, it is also the source of social anxiety. Mutation, whilst derived from the Latin for “change,” has come to take on the connotation of an error or mistake. Richard Dawkins, in his celebrated book The Selfish Gene, compares mutation to “an error corresponding to a single misprinted letter in a book” (31). The language of science is intended to be without the moral overtones that such words as “error” and “misprint” attract. Nevertheless, in the films under consideration, the negative connotations of mutation as error or mistake, are, therefore, the source of the many narrative crises as characters seek to rid themselves of their abilities. Norman Osborn (Willem Dafoe), the villain of Spiderman, is spurred on by his belief that human beings have not achieved their potential, and the implication here is that the presence of physical weakness, illness, and impairment is the supporting evidence. The desire to return the bodies of these superheroes to a “normal” state is best expressed in_ Hulk_, when Banner’s father says: “So you wanna know what’s wrong with him. So you can fix him, cure him, change him.” The link between a mistake in the genetic code and the disablement of the these characters is made explicit when Banner demands from his father an explanation for his transformation into the Hulk – the genetic change is explicitly named a deformity. These films all gesture towards the key question of just what is the normal human genetic code, particularly given the way mutation, as error, is a fundamental tenet in the formation of that code. The films’ focus on extra-ordinary ability can be taken as a sign of the extent of the anxiety about what we might consider normal. Normal is represented, in part, by the supporting characters, named and unnamed, and the narrative turns towards rehabilitating the altered bodies of the main characters. The narratives of social exclusion caused by such radical deviations from the normal human body suggest the lack of a script or language for being able to talk about deviation, except in terms of disability. In Spiderman, Peter Parker (Tobey Maguire) is doubly excluded in the narrative. Beginning as a classic weedy, glasses-wearing, nerdy individual, unable to “get the girl,” he is exposed to numerous acts of humiliation at the commencement of the film. On being bitten by a genetically altered spider, he acquires its speed and agility, and in a moment of “revenge” he confronts one of his tormentors. His super-ability marks him as a social outcast; his tormentors mock him saying “You are a freak” – the emphasis in speech implying that Parker has never left a freakish mode. The film emphasises the physical transformation that occurs after Parker is bitten, by showing his emaciated (and ill) body then cutting to a graphic depiction of genes being spliced into Parker’s DNA. Finally revealing his newly formed, muscular body, the framing provides the visual cues as to the verbal alignment of these bodies – the extraordinary and the impaired bodies are both sources of social disablement. The extreme transformation that occurs to Ben Grimm (Michael Chiklis), in Fantastic 4, can be read as a disability, buying into the long history of the disabled body as freak, and is reinforced by his being named “The Thing.” Socially, facial disfigurement may be regarded as one of the most isolating impairments; for example, films such as The Man without a Face (Mel Gibson, 1993) explicitly explore this theme. As the only character with a pre-existing relationship, Grimm’s social exclusion is reinforced by the rejection of his girlfriend when she sees his face. The isolation in naming Ben Grimm as “The Thing” is also expressed in the naming of Bruce Banner’s (Eric Bana) alter ego “Hulk.” They are grossly enlarged bodies that are seen as grotesque mutations of the “normal” human body – not human, but “thing-like.” The theme of social exclusion is played alongside the idea that those with extra-ordinary ability are also emblematic of the evolutionary dominance of a superior species of which science is an example of human dominance. The Human Genome Project, begun in 1990, and completed in 2003, was in many ways the culmination of a century and a half of work in biochemistry, announcing that science had now completely mapped the human genome: that is, provided the complete sequence of genes on each of the 46 chromosomes in human cells. The announcement of the completed sequencing of the human genome led to, what may be more broadly called, “genomania” in the international press (Lombardo 193). But arguably also, the continued announcements throughout the life of the Project maintained interest in, and raised significant social, legal, and ethical questions about genetics and its use and abuse. I suggest that in these superhero films, whose narratives centre on genetic mutation, that the social exclusion of the characters is based in part on fears about genetics as the source of disability. In these films deviation becomes deviance. It is not my intention to reduce the important political aims of the disability movement by equating the acquisition of super-ability and physical impairment. Rather, I suggest that in the expression of the extraordinary in terms of the genetic within the films, we can detect wider social anxieties about genetic science, particularly as the representations of that science focus the audience’s attention on mutation of the genome. An earlier film, not concerned with superheroes but with the perfectibility of the human body, might prove useful here. Gattaca (Andrew Nicol, 1997), which explores the slippery moral slope of basing the value of the human body in genetic terms (the letters of the title recall the chemicals that structure DNA, abbreviated to G, A, T, C), is a powerful tale of the social consequences of the primacy of genetic perfectibility and reflects the social and ethical issues raised by the Human Genome Project. In a coda to the film, that was not included in the theatrical release, we read: We have now evolved to the point where we can direct our own evolution. Had we acquired this knowledge sooner, the following people may never have been born. The screen then reveals a list of significant people who were either born with or acquired physical or psychological impairments: for example, Abraham Lincoln/Marfan Syndrome, Jackie Joyner-Kersee/Asthma, Emily Dickinson/Manic Depression. The audience is then given the stark reminder of the message of the film: “Of course the other birth that may never have taken place is your own.” The social order of Gattaca is based on “genoism” – discrimination based on one’s genetic profile – which forces characters to either alter or hide their genetic code in order to gain social and economic benefit. The film is an example of what the editors of the special issue of the Florida State University Law Journal on genetics and disability note: how we look at genetic conditions and their relationship to health and disability, or to notions of “normalcy” and “deviance,” is not strictly or even primarily a legal matter. Instead, the issues raised in this context involve ethical considerations and require an understanding of the social contexts in which those issues appear. (Crossley and Shepherd xi) Implicit in these commentators’ concern is the way an ideal body is assumed as the basis from which a deviation in form or ability is measured. These superhero films demonstrate that, in order to talk about super-ability as a deviation from a normal body, they rely on disability scripts as the language of deviation. Scholars in disability studies have identified a variety of ways of talking about disability. The medical model associates impairment or illness with a medical tragedy, something that must be cured. In medical terms an error is any deviation from the norm that needs to be rectified by medical intervention. By contrast, in the social constructivist model, the source of disablement is environmental, political, cultural, or economic factors. Proponents of the social model do not regard impairment as equal to inability (Karpf 80) and argue that the discourses of disability are “inevitably informed by normative beliefs about what it is proper for people’s bodies and minds to be like” (Cumberbatch and Negrine 5). Deviations from the normal body are classification errors, mistakes in social categorisation. In these films aspects of both the medical tragedy and social construction of disability can be detected. These films come at a time when disability remains a site of social and political debate. The return to these superheroes, and their experiences of exclusion, in recent films is an indicator of social anxiety about the functionality of the human body. And as the science of genetics gains increasing public representation, the idea of ability – and disability – that is, what is regarded as “proper” for bodies and minds, is increasingly related to how we regard the genetic code. As the twenty first century began, new insights into the genetic origins of disease and congenital impairments offered the possibility that the previous uncertainty about the provenance of these illnesses and impairments may be eliminated. But new uncertainties have arisen around the value of human bodies in terms of ability and function. This essay has explored the way representations of extra-ordinary ability, as a mutation of the genetic code, trace some of the experiences of disablement. A study of these superhero films suggests that the popular dissemination of genetics has not resulted in an understanding of ability and form as purely bio-chemical, but that thinking about the body as a bio-chemical code occurs within already present moral discourses of the body’s value. References Asch, Adrienne. “Disability Equality and Prenatal Testing: Contradictory or Compatible?” Florida State University Law Review 30.2 (2003): 315-42. Crossley, Mary, and Lois Shepherd. “Genes and Disability: Questions at the Crossroads.” Florida State University Law Review 30.2 (2003): xi-xxiii. Cumberbatch, Guy, and Ralph Negrine. Images of Disability on Television. London: Routledge, 1992. Dawkins, Richard. The Selfish Gene. 30th Anniversary ed. Oxford: Oxford UP, 2006. Karpf, A. “Crippling Images.” Framed: Interrogating Disability in the Media. Eds. A. Pointon and C. Davies. London: British Film Institute, 1997. 79-83. Lombardo, Paul A. “Taking Eugenics Seriously: Three Generations Of ??? Are Enough.” Florida State University Law Review 30.2 (2003): 191-218. “Pop Culture: Out Is In.” Contemporary Sexuality 37.7 (2003): 9. Rutherford, Adam. “Return of the Mutants.” Nature 423.6936 (2003): 119. Sontag, Susan. Illness as Metaphor. London: Penguin, 1988. Turner, Bryan S. Regulating Bodies. London: Routledge, 1992. Vary, Adam B. “Mutant Is the New Gay.” Advocate 23 May 2006: 44-45. Citation reference for this article MLA Style Mantle, Martin. "“Have You Tried Not Being a Mutant?”: Genetic Mutation and the Acquisition of Extra-ordinary Ability." M/C Journal 10.5 (2007). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0710/10-mantle.php>. APA Style Mantle, M. (Oct. 2007) "“Have You Tried Not Being a Mutant?”: Genetic Mutation and the Acquisition of Extra-ordinary Ability," M/C Journal, 10(5). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0710/10-mantle.php>.
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44

Chen, Peter. "Community without Flesh." M/C Journal 2, no. 3 (May 1, 1999). http://dx.doi.org/10.5204/mcj.1750.

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On Wednesday 21 April the Minister for Communications, Information Technology and the Arts introduced a piece of legislation into the Australian Senate to regulate the way Australians use the Internet. This legislation is presented within Australia's existing system of content regulation, a scheme that the Minister describes is not censorship, but merely regulation (Alston 55). Underlying Senator Alston's rhetoric about the protection of children from snuff film makers, paedophiles, drug pushers and other criminals, this long anticipated bill is aimed at reducing the amount of pornographic materials available via computer networks, a censorship regime in an age when regulation and classification are the words we prefer to use when society draws the line under material we want to see, but dare not allow ourselves access to. Regardless of any noble aspirations expressed by free-speech organisations such as Electronic Frontiers Australia relating to the defence of personal liberty and freedom of expression, this legislation is about porn. Under the Bill, Australia would proscribe our citizens from accessing: explicit depictions of sexual acts between consenting adults; mild non-violent fetishes; depictions of sexual violence, coercion or non-consent of any kind; depictions of child sexual abuse, bestiality, sexual acts accompanied by offensive fetishes, or exploitative incest fantasies; unduly detailed and/or relished acts of extreme violence or cruelty; explicit or unjustifiable depictions of sexual violence against non-consenting persons; and detailed instruction or encouragement in matters of crime or violence or the abuse of proscribed drugs. (OFLC) The Australian public, as a whole, favour the availability of sexually explicit materials in some form, with OFLC data indicating a relatively high degree of public support for X rated videos, the "high end" of the porn market (Paterson et al.). In Australia strict regulation of X rated materials in conventional media has resulted in a larger illegal market for these materials than the legalised sex industries of the ACT and Northern Territory (while 1.2 million X rated videos are legally sold out of the territories, 2 million are sold illegally in other jurisdictions, according to Patten). In Australia, censorship of media content has traditionally been based on the principles of the protection of society from moral harm and individual degradation, with specific emphasis on the protection of innocents from material they are not old enough for, or mentally capable of dealing with (Joint Select Committee on Video Material). Even when governments distanced themselves from direct personal censorship (such as Don Chipp's approach to the censorship of films and books in the late 1960s and early 1970s) and shifted the rationale behind censorship from prohibition to classification, the publicly stated aims of these decisions have been the support of existing community standards, rather than the imposition of strict legalistic moral values upon an unwilling society. In the debates surrounding censorship, and especially the level of censorship applied (rather than censorship as a whole), the question "what is the community we are talking about here?" has been a recurring theme. The standards that are applied to the regulation of media content, both online and off, are often the focus of community debate (a pluralistic community that obviously lacks "standards" by definition of the word). In essence the problem of maintaining a single set of moral and ethical values for the treatment of media content is a true political dilemma: a problem that lacks any form of solution acceptable to all participants. Since the introduction of the Internet as a "mass" medium (or more appropriately, a "popular" one), government indecision about how best to treat this new technology has precluded any form or content regulation other than the ad hoc use of existing non-technologically specific law to deal with areas of criminal or legally sanctionable intent (such as the use of copyright law, or the powers under the Crimes Act relating to the improper use of telecommunications services). However, indecision in political life is often associated with political weakness, and in the face of pressure to act decisively (motivated again by "community concern"), the Federal government has decided to extend the role of the Australian Broadcasting Authority to regulate and impose a censorship regime on Australian access of morally harmful materials. It is important to note the government's intention to censor access, rather than content of the Internet. While material hosted in Australia (ignoring, of course, the "cyberspace" definitions of non-territorial existence of information stored in networks) will be censored (removed from Australia computers), the government, lacking extraterritorial powers to compel the owners of machines located offshore, intends to introduce of some form of refused access list to materials located in other nations. What is interesting to consider in this context is the way that slight shifts of definitional paradigm alter the way this legislation can be considered. If information flows (upon which late capitalism is becoming more dependent) were to be located within the context of international law governing the flow of waterways, does the decision to prevent travel of morally dubious material through Australia's informational waterways impinge upon the riparian rights of other nations (the doctrine of fair usage without impeding flow; Godana 50)? Similarly, if we take Smith's extended definition of community within electronic transactional spaces (the maintenance of members' commitment to the group, monitoring and sanctioning behaviour and the production and distribution of resources), then the current Bill proposes the regulation of the activities of one community by another (granted, a larger community that incorporates the former). Seen in this context, this legislation is the direct intervention in an established social order by a larger and less homogeneous group. It may be trite to quote the Prime Minister's view of community in this context, where he states ...It is free individuals, strong communities and the rule of law which are the best defence against the intrusive power of the state and against those who think they know what is best for everyone else. (Howard 21) possibly because the paradigm in which this new legislation is situated does not classify those Australians online (who number up to 3 million) as a community in their own right. In a way the Internet users of Australia have never identified themselves as a community, nor been asked to act in a communitarian manner. While discussions about the value of community models when applied to the Internet are still divided, there are those who argue that their use of networked services can be seen in this light (Worthington). What this new legislation does, however, is preclude the establishment of public communities in order to meet the desires of government for some limits to be placed on Internet content. The Bill does allow for the development of "restricted access systems" that would allow pluralistic communities to develop and engage in a limited amount of self-regulation. These systems include privately accessible Intranets, or sites that restrict access through passwords or some other form of age verification technique. Thus, ignoring the minimum standards that will be required for these communities to qualify for some measure of self-regulatory freedom, what is unspoken here is that specific subsections of the Internet population may exist, provided they keep well away from the public gaze. A ghetto without physical walls. Under the Bill, a co-regulatory approach is endorsed by the government, favouring the establishment of industry codes of practice by ISPs and (or) the establishment of a single code of practice by the content hosting industry (content developers are relegated to yet undetermined complementary state legislation). However, this section of the Bill, in mandating a range of minimum requirements for these codes of practice, and denying plurality to the content providers, places an administrative imperative above any communitarian spirit. That is, that the Internet should have no more than one community, it should be an entity bound by a single guiding set of principles and be therefore easier to administer by Australian censors. This administrative imperative re-encapsulates the dilemma faced by governments dealing with the Internet: that at heart, the broadcast and print press paradigms of existing censorship regimes face massive administrative problems when presented with a communications technology that allows for wholesale publication of materials by individuals. Whereas the limited numbers of broadcasters and publishers have allowed the development of Australia's system of classification of materials (on a sliding scale from G to RC classifications or the equivalent print press version), the new legislation introduced into the Senate uses the classification scheme simply as a censorship mechanism: Internet content is either "ok" or "not ok". From a public administration perspective, this allows government to drastically reduce the amount of work required by regulators and eases the burden of compliance costs by ISPs, by directing clear and unambiguous statements about the acceptability of existing materials placed online. However, as we have seen in other areas of social policy (such as the rationalisation of Social Security services or Health), administrative expedience is often antipathetic to small communities that have special needs, or cultural sensitivities outside of mainstream society. While it is not appropriate to argue that public administration creates negative social impacts through expedience, what can be presented is that, where expedience is a core aim of legislation, poor administration may result. For many Australian purveyors of pornography, my comments will be entirely unhelpful as they endeavour to find effective ways to spoof offshore hosts or bone up (no pun intended) on tunnelling techniques. Given the easy way in which material can be reconstituted and relocated on the Internet, it seems likely that some form of regulatory avoidance will occur by users determined not to have their content removed or blocked. For those regulators given the unenviable task of censoring Internet access it may be worthwhile quoting from Sexing the Cherry, in which Jeanette Winterson describes the town: whose inhabitants are so cunning that to escape the insistence of creditors they knock down their houses in a single night and rebuild them elsewhere. So the number of buildings in the city is always constant but they are never in the same place from one day to the next. (43) Thus, while Winterson saw this game as a "most fulfilling pastime", it is likely to present real administrative headaches to ABA regulators when attempting to enforce the Bill's anti-avoidance clauses. The Australian government, in adapting existing regulatory paradigms to the Internet, has overlooked the informal communities who live, work and play within the virtual world of cyberspace. In attempting to meet a perceived social need for regulation with political and administrative expedience, it has ignored the potentially cohesive role of government in developing self-regulating communities who need little government intervention to produce socially beneficial outcomes. In proscribing activity externally to the realm in which these communities reside, what we may see is a new type of community, one whose desire for a feast of flesh leads them to evade the activities of regulators who operate in the "meat" world. What this may show us is that in a virtual environment, the regulators' net is no match for a world wide web. References Alston, Richard. "Regulation is Not Censorship." The Australian 13 April 1999: 55. Paterson, K., et. al. Classification Issues: Film, Video and Television. Sydney: The Office of Film and Literature Classification, 1993. Patten, F. Personal interview. 9 Feb. 1999. Godana, B.A. Africa's Shared Water Resources: Legal and Institutional Aspects of the Nile, Niger and Senegal River Systems. London: Frances Pinter, 1985. Howard, John. The Australia I Believe In: The Values, Directions and Policy Priorities of a Coalition Government Outlined in 1995. Canberra: Liberal Party, 1995. Joint Select Committee On Video Material. Report of the Joint Select Committee On Video Material. Canberra: APGS, 1988. Office of Film and Literature Classification. Cinema & Video Ratings Guide. 1999. 1 May 1999 <http://www.oflc.gov.au/classinfo.php>. Smith, Marc A. "Voices from the WELL: The Logic of the Virtual Commons." 1998. 2 Mar. 1999 <http://www.sscnet.ucla.edu/soc/csoc/papers/voices/Voices.htm>. Winterson, Jeanette. Sexing the Cherry. New York: Vintage Books. 1991. Worthington, T. Testimony before the Senate Select Committee on Information Technologies. Unpublished, 1999. Citation reference for this article MLA style: Peter Chen. "Community without Flesh: First Thoughts on the New Broadcasting Services Amendment (Online Services) Bill 1999." M/C: A Journal of Media and Culture 2.3 (1999). [your date of access] <http://www.uq.edu.au/mc/9905/bill.php>. Chicago style: Peter Chen, "Community without Flesh: First Thoughts on the New Broadcasting Services Amendment (Online Services) Bill 1999," M/C: A Journal of Media and Culture 2, no. 3 (1999), <http://www.uq.edu.au/mc/9905/bill.php> ([your date of access]). APA style: Author. (1999) Community without flesh: first thoughts on the new broadcasting services amendment (online services) bill 1999. M/C: A Journal of Media and Culture 2(3). <http://www.uq.edu.au/mc/9905/bill.php> ([your date of access]).
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45

Hoffman, David, Ashley Stewart, Jennifer Breznay, Kara Simpson, and Johanna Crane. "Vaccine Hesitancy Narratives." Voices in Bioethics 7 (October 18, 2021). http://dx.doi.org/10.52214/vib.v7i.8789.

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Photo by Hush Naidoo Jade Photography on Unsplash INTRODUCTION In this collection of narratives, the authors describe their own experiences with and reflections on healthcare worker vaccine hesitancy. The narratives explore each author’s engagement with different communities experiencing vaccine hesitancy, touching on reasons for hesitancy, proposed solutions, and legal aspects. Author’s names appear above their narratives. l. Johanna T. Crane Vaccine hesitancy, defined as “a delay of acceptance or refusal of vaccination despite the availability of vaccination services,”[1] is a worldwide but locally shaped phenomenon that pre-dates the COVID-19 pandemic.[2] Contrary to some portrayals, vaccine hesitancy is not the same as the more absolute antivaccination stance, or what some call “anti-vax.” Many people who are hesitant are not ideologically opposed to vaccines. Hesitancy is also sometimes framed as anti-science, yet reluctance to vaccinate is often about managing risk, trustworthiness, and doubt in the context of uncertainty; it represents an effort to “talk back to science” about unaddressed needs and concerns.[3] In the US, the newness of the vaccines, the unprecedented speed at which they were developed, and their remaining under emergency use authorization at first complicated public confidence. Political polarization and racial and social inequality shape vaccine acceptance and public distrust as well. While vaccine acceptance has increased in the months since the vaccines first became available, many eligible individuals have not yet been vaccinated, including a significant number of healthcare workers.[4] Vaccine hesitancy among healthcare workers may seem surprising, especially given their frontline experience – I confess that it surprised me at first. But when I began interviewing health care workers for a study on COVID vaccine roll-out at community health centers, I learned to take a more complex view. Although the study was focused on patient vaccine access,[5] many of the frontline health care workers we spoke with also described hesitancy among some of their colleagues (and, in a few cases, themselves). From these conversations, I learned that these “healthcare heroes” are also regular people and members of communities. Their concerns about COVID vaccination often reflect the prevailing concerns advanced in their communities, such as worries about vaccine side effects and safety. Like other workers, some fear missing work and losing income, as not all healthcare employers offer paid time off for vaccination or recovery. (Importantly, reluctance to vaccinate is highest among healthcare workers in lower-paid positions with little job security, such as clerks, housekeepers, patient care assistants, and home health aides.)[6] For some healthcare workers of color, the protection offered by the vaccine sits in tension with both current and historical experiences of medical abuse and neglect. Some interviewees, fully vaccinated themselves, rejected the framework of “hesitancy” entirely, arguing that Black and Brown reluctance to be vaccinated first should be understood through the lens of “self-protection”. Due to the nature of their work, healthcare workers have faced great social pressure to vaccinate and vaccinate first. This is understandable, given that vaccination against COVID-19 protects not only workers themselves but aligns with the ethical duty to prevent harm to patients by reducing the risk of transmission in healthcare settings. When the FDA approved COVID-19 vaccines under emergency use authorization in December 2020, many healthcare workers were extremely grateful to be designated “1a” – the first group prioritized to receive the shots.[7] For many bioethicists, prioritization of healthcare workers represented a recognition of the extreme risks that many front-line workers had endured since the onset of the pandemic, including critical shortages in PPE. But it is important to remember that for some workers, going first may have felt like serving as guinea pigs for new vaccines that had yet to be granted full FDA approval. For these individuals, the expectation that they would vaccinate first may have felt like an additional risk rather than a reward. Healthcare workers who are hesitant to vaccinate may feel ashamed or be subject to shaming by others;[8] this may make it difficult to discuss their concerns in the workplace. Throughout the pandemic, healthcare workers have been lauded as “heroes”, and some healthcare employers have promoted vaccination among their workforce as a “heroic” action. This messaging implies that waiting to vaccinate is shameful or cowardly and is echoed in opinion pieces and op-eds describing unvaccinated people as “selfish” or “free riders.”[9] By fostering the proper dialogue, we can respond respectfully to hesitancy among healthcare workers while still working towards the goal of increased vaccination. We in the bioethics and medical community should be willing to listen to our colleagues’ concerns with respect. Top-down approaches aimed at “correcting” hesitancy cannot address the more fundamental issues of trust that are often at stake. Instead, there must be dialogue over time. Conversations with a trusted healthcare provider have a crucial role.[10] Blaming and shaming rhetoric, whether explicit or implicit, gets us nowhere – in fact, it likely moves us backward by likely exacerbating any existing distrust or resentment that workers may hold toward their employers.[11] Lastly, the onus of trust must be with institutions, not individuals. There is a lot of talk about getting communities of color, and Black people, particularly, to "trust" healthcare institutions and the COVID vaccines. This racializes trust and puts the burden on harmed communities rather than on institutions acting in trustworthy ways.[12] Dialogue, respect, and trustworthiness must guide us even in the new era of workplace mandates. Mandates make these strategies even more important as we look toward an uncertain future. As Heidi Larson, founder of the Vaccine Confidence Project, recently said, “We should not forget that we are making people's future history now. Are people going to remember that they were treated respectfully and engaged?”[13] ll. Kara Simpson Since the release of the vaccine for COVID-19 in late 2020, there have been robust discussions within the medical community, the media, and political arenas about vaccine hesitancy among healthcare workers. The public became aware that healthcare workers, the first group to become eligible for the vaccine, were not rushing to “take the shot.” Many people’s opinions were aligned by race, ethnicity, socioeconomic status, and political affiliation. People of color were one of the first groups to be labeled vaccine hesitant as our experiences of distrust of the medical community and the politicization of the vaccine explained the low turnout.[14] It was not uncommon to hear, “this vaccine just came out; let’s wait and see if there are side effects.” Interestingly, many people in the healthcare community and in the public did not understand why healthcare workers of color remained hesitant. Trust is a vital component of any viable relationship, especially in the clinical realm. To have successful health outcomes, it is essential for clinicians to build trusting relationships with their patients and peers. Many people of color are distrustful towards the medical institution due to the years of systemic racism and abuses that they have experienced, witnessed, or learned about. Healthcare workers of color are not excluded from the experiences of their communities outside of work. In fact, I assert that healthcare of color may have an additional burden of hesitation because of their lived experiences of distrust in receiving care and inequality within their professional environment. These dual traumas can work in tandem to strengthen hesitancy. I assert that building trusting clinical relationships will address hesitancy over time. Currently, many healthcare workers are worried about vaccine mandates. For a group of people that have experienced intergenerational enslavement and marginalization, mandates feel coercive and serve as a reminder of how “lesser” bodies are considered unworthy of voice, fundamental human rights, independent decision making. To call the vaccine mandate paternalistic would be an understatement. An unintended result of vaccine mandates will be the reinforcement of hesitancy and distrust of the medical institution as trust and coercion cannot coexist. This mandate will give more power to the conspiracy theories and harm those who already do not seek or receive adequate health care because of systemic inequalities. Furthermore, mandates can also dissuade people of color from becoming healthcare workers, and others may leave the field. In essence, vaccine hesitancy is a symptom of a much larger problem: the distrust of the medical establishment. As bioethicists, our mission should be to support interventions that foster “trustworthiness” of the institutions rather than those that cause trauma. Several organizations have proposed mask mandates and weekly testing as a measure to protect the population at large and still respect the autonomy of the unvaccinated.[15] lll. Jennifer Breznay I work in a very large community teaching hospital in Brooklyn, and we were extremely hard hit by COVID in March 2020. I worked on inpatient medical units and witnessed a lot of suffering. And after nine months of fear and despair about COVID’s toll, I felt tremendous frustration in December when I heard that many healthcare workers would reject the vaccine. As the co-chair of the Bioethics Committee, I drafted a statement recommending vaccination for all employees. When the draft was revised and approved by the Bioethics Committee, I began to discuss it with employees, and I appreciated different perspectives I had not heard before. In the end, rather than releasing the statement, we directed our efforts at creating a dialogue. I also volunteer at a not-for-profit which operates seven early childhood education centers in Northern Brooklyn. The Executive Director invited me to collaborate on strategies to encourage staff vaccination, and we decided to offer a Zoom conference to 20 members of the staff. I was extremely nervous about how the audience would perceive me, a white doctor whom they did not know. I felt awkward about coming to them with an agenda. And there was also the question of whether I was an appropriate messenger compared to a person of color. Yet, I felt like I shouldn't back away from this. So, I chose to simply disclose my discomfort at the beginning of the Zoom. I said, “Thanks for having me. You know, as a white physician, I understand you might have concerns about trusting what I say. Four hundred years of inequity and abuse by the healthcare system can create a lot of mistrust, but I’m here to try to answer your questions.” Ultimately the Executive Director reported that the Zoom was successful in stimulating a lot of conversation among the staff about the vaccine. I think the critical piece is the intimate but open conversation, where you can elicit values. lV. Ashley L. Stewart In the rural areas of our state, healthcare institutions are inextricably tied to their communities. Rural hospitals hire from, serve, and function in the community where they are located. Successful implementation of a vaccine roll-out in such rural areas requires explicit recognition of the role and influence of the community. After identifying issues common to the area, rural institutions can address them. Even when rural institutions find that healthcare worker concerns seem to be unique or personal, they are often related to the larger concerns of the community.[16] Community-based increased vaccine hesitancy may coincide with an underlying issue, such as lack of information rather than principled or experience-based resistance.[17] When the vaccines became available, rural vaccination coordinators encountered a wealth of misinformation that left many people initially undecided. Compounding this lack of information, workers expressed a sense of fear about the professional consequences of voicing concerns, especially in tight-knit communities. Many workers expressed concern about being judged merely for sharing their questions or decisions.[18] They also felt that saying or doing something to promote the value of vaccination might change their relationship with members of the community where they live and work.[19] As there was a fear of engaging in productive conversations, it was difficult for them to find valuable information, and the lack of information discouraged them from being vaccinated. Vaccine coordinators wanted to get information to the entire community based on the most current research and release unbiased, consistent, and timely information from sources all people in the community could trust, including from multiple sources at once. Communication must focus on answering many types of questions, which must often be done in private or anonymously. Where poorly supported or incorrect information is widely available, sharing objective information is crucial to turning the tide of distrust. If the healthcare community dismisses concerns or assumes that answering questions based on misinformation is a waste of time, the community-based institutions will further the distrust. Some may feel that vaccine coordinators should not address misinformation directly, yet avoidance has been widely unsuccessful.[20] Being respectful and non-judgmental in answering questions posed by people who do not know what is true can be hard, but in rural communities, answering completely and honestly without judgment is a critical component of any effort to inform people. Telling people to get vaccinated “for the greater good” can sound the same as being told not to get a vaccine because it is “bad” if both sources of information fail to back up their claims. Ultimately rural institutions are respected because they are a resource to their communities, a priority we must preserve. It is also critical to treat everyone respectfully regardless of vaccine status.[21] People may perceive mandates, divisive policies, or disrespectful treatment of people based on vaccination status as discriminatory or coercive, weakening the appeal of vaccination. Such practices may make people less trusting and more anchored to their position as they come to see vaccination proponents as untrustworthy or authoritarian. We must work to maintain respect for human autonomy. Using unethical means to achieve even a just end will not lead to a “greater good” but rather to the perception that people in positions of authority would achieve a result “by any means necessary.” V. David N. Hoffman The central moral quandary that arises whenever vaccine hesitancy among healthcare workers is discussed is whether workers who refuse to get vaccinated should or could be fired. We should clarify that we are applying a definition of mandate in the employment context for private employers, the violation of which results in loss of employment. Government-controlled provider organizations are just now weighing in on this topic and are generally pursuing strategies that impose periodic, usually weekly, testing requirements for those workers who decline to get vaccinated. In the private sector, employers can require their employees to do a great many things as a condition of employment, and one of them is to get vaccinated against COVID -19. In the most prominent case to date, just such a mandate gave rise to a lawsuit in Texas involving Houston Methodist Hospital. In that case, 170 employees asserted that an employer should not be allowed to force them to get vaccinated. The judge held that, while no employer can force an employee to get vaccinated, no employer is obligated to continue the employment of any employee who declines to follow rules established by that employer, including the obligation to get vaccinated.[22] In Texas, what the judge said is you are not being forced to get vaccinated, but your employer is allowed to set limits and conditions on employment, including vaccination. Employees do not have an obligation to get vaccinated, but they also have no right to their jobs. That is because of a widely misunderstood legal concept: “employment at will.” Employment at will sounds like a rule that employees can do what they want at work, but in fact, employment at will means only that you can quit your job whenever you want (we do not permit indentured servitude). At the same time, your employer can fire you at any time, for any reason or no reason, unless the reason is a pretext and involves one of the protected statuses (race, color, religion, sex, or national origin, and in some jurisdictions gender orientation, gender identity). Generally, any employers, including hospitals, can decide that if someone is not willing to get a vaccination, or if they are not willing to complete sexual harassment training or participate in the hospital’s infection control program, that is the employee’s right, but it will mean that an employer can similarly decline to continue providing employment. The evolution of this hesitancy discussion will be influenced by the narrower debate playing out in the court of public opinion, and the courts of law, over the enforceability of New York’s recently enacted vaccine mandate. Regardless of whether that mandate survives, with or without medical and religious exemptions, healthcare employers will be left with a profound ethical dilemma. At the end of all the litigation, if there is a religious exemption, employers will always be burdened with the responsibility to determine whether an individual employee has asserted a genuine and sincere religious objection to vaccination and whether the employer is able to provide an accommodation that is safe and effective in protecting the interests of co-workers and patients. The anticipated federal mandate, which reportedly will have a test/mask alternative, will only make this ethical task more challenging. This leads to the final point in this analysis, which is that while private employers, including hospitals, can deprive an individual of their employment if those individuals refuse to get vaccinated, just because an employer can do so does not mean it should do so.[23] - [1] MacDonald NE. Vaccine hesitancy: Definition, scope and determinants. Vaccine. 2015;33(34):4161-4164. doi:10.1016/j.vaccine.2015.04.036 [2] Larson HJ, de Figueiredo A, Xiahong Z, et al. The State of Vaccine Confidence 2016: Global Insights Through a 67-Country Survey. EBioMedicine. 2016;12:295-301. doi:10.1016/j.ebiom.2016.08.042 [3] Larson H. Stuck: How Vaccine Rumors Start - and Why They Don’t Go Away. Oxford University Press; 2020; Benjamin R. Informed Refusal: Toward a Justice-based Bioethics. Sci Technol Hum Values. 2016;41(6):967-990. doi:10.1177/0162243916656059 [4] Deepa Shivaram, In The Fight Against COVID, Health Workers Aren't Immune To Vaccine Misinformation September 18, 2021. NPR Special Series: The Coronavirus. https://www.npr.org/2021/09/18/1037975289/unvaccinated-covid-19-vaccine-refuse-nurses-heath-care-workers [5] Crane JT, Pacia D, Fabi R, Neuhaus C, and Berlinger N. Advancing Covid vaccination equity at Federally Qualified Health Centers: A rapid qualitative review. Accepted and awaiting publication at JGIM. [6] Ashley Kirzinger. “KFF/The Washington Post Frontline Health Care Workers Survey - Vaccine Intentions.” KFF, 22 Apr. 2021, https://www.kff.org/report-section/kff-washington-post-frontline-health-care-workers-survey-vaccine-intentions/. [7] Johanna Crane, Samuel Reis-Dennis and Megan Applewhite. “Prioritizing the ‘1a’: Ethically Allocating Scarce Covid Vaccines to Health Care Workers.” The Hastings Center, 21 Dec. 2020, https://www.thehastingscenter.org/prioritizing-the-1a-ethically-allocating-covid-vaccines-to-health-care-workers/. [8] “'I'm Not an Anti-Vaxxer, but...' US Health Workers' Vaccine Hesitancy Raises Alarm.” The Guardian, Guardian News and Media, 10 Jan. 2021, https://www.theguardian.com/world/2021/jan/10/coronavirus-covid-19-vaccine-hesitancy-us-health-workers. [9] Gerson M. If you are healthy and refuse to take the vaccine, you are a free-rider. Washington Post. April 15, 2021. [10] Crane JT, Pacia D, Fabi R, Neuhaus C, and Berlinger N. Advancing Covid vaccination equity at Federally Qualified Health Centers: A rapid qualitative review. Accepted and awaiting publication at JGIM. [11] Larson H. Stuck : How Vaccine Rumors Start - and Why They Don’t Go Away. Oxford University Press; 2020. [12] Benjamin R. Race for Cures: Rethinking the Racial Logics of ‘Trust’ in Biomedicine. Sociology Compass. 2014;8(6):755-769. doi:10.1111/soc4.12167; Warren RC, Forrow L, David Augustin Hodge S, Truog RD. Trustworthiness before Trust — Covid-19 Vaccine Trials and the Black Community. N Engl J Med. Published online October 16, 2020. doi:10.1056/NEJMp2030033 [13] Offri D. Heidi Larson, Vaccine Anthropologist. New Yorker. Published online June 12, 2021. Accessed August 11, 2021. https://www.newyorker.com/science/annals-of-medicine/heidi-larson-vaccine-anthropologist [14] Razai M S, Osama T, McKechnie D G J, Majeed A. Covid-19 Vaccine Hesitancy Among Ethnic Minority Groups. BMJ 2021; 372 :n513 doi:10.1136/bmj.n513 [15] Dasgupta, Sharoda, et al. “Differences in Rapid Increases in County-Level COVID-19 Incidence by Implementation of Statewide Closures and Mask Mandates — United States, June 1–September 30, 2020.” Annals of Epidemiology, vol. 57, Sept. 2021, pp. 46–53., https://doi.org/10.1016/j.annepidem.2021.02.006. [16] Do, Tuong Vi C et al. “COVID-19 Vaccine Acceptance Among Rural Appalachian Healthcare Workers (Eastern Kentucky/West Virginia): A Cross-Sectional Study.” Cureus vol. 13,8 e16842. 2 Aug. 2021, doi:10.7759/cureus.16842; Danabal, K.G.M., Magesh, S.S., Saravanan, S. et al. Attitude towards COVID 19 vaccines and vaccine hesitancy in urban and rural communities in Tamil Nadu, India – a community-based survey. BMC Health Serv Res 21, 994 (2021). https://doi.org/10.1186/s12913-021-07037-4 [17] Scott C. Ratzan MD, MPA, MA, Lawrence O. Gostin JD, Najmedin Meshkati PhD, CPE, Kenneth Rabin PhD & Ruth M. Parker MD (2020) COVID-19: An Urgent Call for Coordinated, Trusted Sources to Tell Everyone What They Need to Know and Do, Journal of Health Communication, 25:10, 747-749, DOI: 10.1080/10810730.2020.1894015 [18] Huang, Pien. “Some Health Care Workers Are Wary of Getting COVID-19 Vaccines.” NPR, NPR, 1 Dec. 2020, https://www.npr.org/sections/health-shots/2020/12/01/940158684/some-health-care-workers-are-wary-of-getting-covid-19-vaccines. Portnoy, Jenna. “Several Hundred Virginia Health-Care Workers Have Been Suspended or Fired over Coronavirus Vaccine Mandates.” The Washington Post, WP Company, 4 Oct. 2021, https://www.washingtonpost.com/local/covid-vaccine-mandate-hospitals-virginia/2021/10/01/b7976d16-21ff-11ec-8200-5e3fd4c49f5e_story.html. [19] Jennifer A. Lueck & Alaina Spiers (2020) Which Beliefs Predict Intention to Get Vaccinated against COVID-19? A Mixed-Methods Reasoned Action Approach Applied to Health Communication, Journal of Health Communication, 25:10, 790-798, DOI: 10.1080/10810730.2020.1865488 [20] Lockyer, Bridget, et al. “Understanding Covid-19 Misinformation and Vaccine Hesitancy in Context: Findings from a Qualitative Study Involving Citizens in Bradford, UK.” Health Expectations, vol. 24, no. 4, 4 May 2021, pp. 1158–1167., https://doi.org/10.1101/2020.12.22.20248259. Scott C. Ratzan & Ruth M. Parker (2020) Vaccine Literacy—Helping Everyone Decide to Accept Vaccination, Journal of Health Communication, 25:10, 750-752, DOI: 10.1080/10810730.2021.1875083. [21] Zimmerman, Anne. Columbia Academic Commons, 2020, Toward a Civilized Vaccination Discussion: Abandoning the False Assumption That Scientific Goals Are Shared by All, https://academiccommons.columbia.edu/doi/10.7916/d8-rzh0-1f73. [22] Bridges, et al v. Houston Methodist Hospital et al, https://docs.justia.com/cases/federal/districtcourts/texas/txsdce/4:2021cv01774/1830373/18 [23] David N. Hoffman, “Vaccine Mandates for Health Care Workers Raise Several Ethical Dilemmas,” Hasting Center Bioethics Forum. August 2021. https://www.thehastingscenter.org/vaccine-mandates-for-health-care-workers-raise-several-ethical-dilemmas/
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46

Potter, Emily. "Calculating Interests: Climate Change and the Politics of Life." M/C Journal 12, no. 4 (October 13, 2009). http://dx.doi.org/10.5204/mcj.182.

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Abstract:
There is a moment in Al Gore’s 2006 documentary An Inconvenient Truth devised to expose the sheer audacity of fossil fuel lobby groups in the United States. In their attempts to address significant scientific consensus and growing public concern over climate change, these groups are resorting to what Gore’s film suggests are grotesque distortions of fact. A particular example highlighted in the film is the Competitive Enterprise Institute’s (CPE—a lobby group funded by ExxonMobil) “pro” energy industry advertisement: “Carbon dioxide”, the ad states. “They call it pollution, we call it life.” While on the one hand employing rhetoric against the “inconvenient truth” that carbon dioxide emissions are ratcheting up the Earth’s temperature, these advertisements also pose a question – though perhaps unintended – that is worth addressing. Where does life reside? This is not an issue of essentialism, but relates to the claims, materials and technologies through which life as a political object emerges. The danger of entertaining the vested interests of polluting industry in a discussion of climate change and its biopolitics is countered by an imperative to acknowledge the ways in which multiple positions in the climate change debate invoke and appeal to ‘life’ as the bottom line, or inviolable interest, of their political, social or economic work. In doing so, other questions come to the fore that a politics of climate change framed in terms of moral positions or competing values will tend to overlook. These questions concern the manifold practices of life that constitute the contemporary terrain of the political, and the actors and instruments put in this employ. Who speaks for life? And who or what produces it? Climate change as a matter of concern (Latour) has gathered and generated a host of experts, communities, narratives and technical devices all invested in the administration of life. It is, as Malcom Bull argues, “the paradigmatic issue of the new politics,” a politics which “draws people towards the public realm and makes life itself subject to the caprices of state and market” (2). This paper seeks to highlight the politics of life that have emerged around climate change as a public issue. It will argue that these politics appear in incremental and multiple ways that situate an array of actors and interests as active in both contesting and generating the terms of life: what life is and how we come to know it. This way of thinking about climate change debates opposes a prevalent moralistic framework that reads the practices and discourses of debate in terms of oppositional positions alone. While sympathies may flow in varying directions, especially when it comes to such a highly charged and massively consequential issue as climate change, there is little insight to be had from charging the CPE (for example) with manipulating consumers, or misrepresenting well-known facts. Where new and more productive understandings open up is in relation to the fields through which these gathering actors play out their claims to the project of life. These fields, from the state, to the corporation, to the domestic sphere, reveal a complex network of strategies and devices that seek to secure life in constantly renovated terms. Life Politics Biopolitical scholarship in the wake of Foucault has challenged life as a pre-given uncritical category, and sought to highlight the means through which it is put under question and constituted through varying and composing assemblages of practitioners and practices. Such work regards the project of human well-being as highly complex and technical, and has undertaken to document this empirically through close attention to the everyday ecologies in which humans are enmeshed. This is a political and theoretical project in itself, situating political processes in micro, as well as macro, registers, including daily life as a site of (self) management and governance. Rabinow and Rose refer to biopolitical circuits that draw together and inter-relate the multiple sites and scales operative in the administration of life. These involve not just technologies, rationalities and regimes of authority and control, but also politics “from below” in the form of rights claims and community formation and agitation (198). Active in these circuits, too, are corporate and non-state interests for whom the pursuit of maximising life’s qualities and capabilities has become a concern through which “market relations and shareholder value” are negotiated (Rabinow and Rose 211). As many biopolitical scholars argue, biopower—the strategies through which biopolitics are enacted—is characteristic of the “disciplinary neo-liberalism” that has come to define the modern state, and through which the conduct of conduct is practiced (Di Muzio 305). Foucault’s concept of governmentality describes the devolution of state-based disciplinarity and sovereignty to a host of non-state actors, rationalities and strategies of governing, including the self-managing subject, not in opposition to the state, but contributing to its form. According to Bratich, Packer and McCarthy, everyday life is thus “saturated with governmental techniques” (18) in which we are all enrolled. Unlike regimes of biopolitics identified with what Agamben terms “thanopolitics”—the exercise of biopower “which ultimately rests on the power of some to threaten the death of others” (Rabinow and Rose 198), such as the Nazi’s National Socialism and other eugenic campaigns—governmental arts in the service of “vitalist” biopolitics (Rose 1) are increasingly diffused amongst all those with an “interest” in sustaining life, from organisations to individuals. The integration of techniques of self-governance which ask the individual to work on themselves and their own dispositions with State functions has broadened the base by which life is governed, and foregrounded an unsettled terrain of life claims. Rose argues that medical science is at the forefront of these contemporary biopolitics, and to this effect “has […] been fully engaged in the ethical questions of how we should live—of what kinds of creatures we are, of the kinds of obligations that we have to ourselves and to others, of the kinds of techniques we can and should use to improve ourselves” (20). Asking individuals to self-identify through their medical histories and bodily specificities, medical cultures are also shaping new political arrangements, as communities connected by shared genetics or physical conditions, for instance, emerge, evolve and agitate according to the latest medical knowledge. Yet it is not just medicine that provokes ethical work and new political forms. The environment is a key site for life politics that entails a multi-faceted discourse of obligations and entitlements, across fields and scales of engagement. Calculating Environments In line with neo-liberal logic, environmental discourse concerned with ameliorating climate change has increasingly focused upon the individual as an agent of self-monitoring, to both facilitate government agendas at a distance, and to “self-fashion” in the mode of the autonomous subject, securing against external risks (Ong 501). Climate change is commonly represented as such a risk, to both human and non-human life. A recent letter published by the Royal Australasian College of Physicians in two leading British medical journals, named climate change as the “biggest global health threat of the twenty-first century” (Morton). As I have argued elsewhere (Potter), security is central to dominant cultures of environmental governance in the West; these cultures tie sustainability goals to various and interrelated regimes of monitoring which attach to concepts of what Clark and Stevenson call “the good ecological citizen” (238). Citizenship is thus practiced through strategies of governmentality which call on individuals to invest not just in their own well-being, but in the broader project of life. Calculation is a primary technique through which modern environmental governance is enacted; calculative strategies are seen to mediate risk, according to Foucault, and consequently to “assure living” (Elden 575). Rationalised schemes for self-monitoring are proliferating under climate change and the project of environmentalism more broadly, something which critics of neo-liberalism have identified as symptomatic of the privatisation of politics that liberal governmentality has fostered. As we have seen in Australia, an evolving policy emphasis on individual practices and the domestic sphere as crucial sites of environmental action – for instance, the introduction of domestic water restrictions, and the phasing out of energy-inefficient light bulbs in the home—provides a leading discourse of ethico-political responsibility. The rise of carbon dioxide counting is symptomatic of this culture, and indicates the distributed fields of life management in contemporary governmentality. Carbon dioxide, as the CPE is keen to point out, is crucial to life, but it is also—in too large an amount—a force of destruction. Its management, in vitalist terms, is thus established as an effort to protect life in the face of death. The concept of “carbon footprinting” has been promoted by governments, NGOs, industry and individuals as a way of securing this goal, and a host of calculative techniques and strategies are employed to this end, across a spectrum of activities and contexts all framed in the interests of life. The footprinting measure seeks to secure living via self-policed limits, which also—in classic biopolitical form—shift previously private practices into a public realm of count-ability and accountability. The carbon footprint, like its associates the ecological footprint and the water footprint, has developed as a multi-faceted tool of citizenship beyond the traditional boundaries of the state. Suggesting an ecological conception of territory and of our relationships and responsibilities to this, the footprint, as a measure of resource use and emissions relative to the Earth’s capacities to absorb these, calculates and visualises the “specific qualities” (Elden 575) that, in a spatialised understanding of security, constitute and define this territory. The carbon footprint’s relatively simple remit of measuring carbon emissions per unit of assessment—be that the individual, the corporation, or the nation—belies the ways in which life is formatted and produced through its calculations. A tangled set of devices, practices and discourses is employed to make carbon and thus life calculable and manageable. Treading Lightly The old environmental adage to “tread lightly upon the Earth” has been literalised in the metaphor of the footprint, which attempts both to symbolise environmental practice and to directly translate data in order to meaningfully communicate necessary boundaries for our living. The World Wildlife Fund’s Living Planet Report 2008 exemplifies the growing popularity of the footprint as a political and poetic hook: speaking in terms of our “ecological overshoot,” and the move from “ecological credit to ecological deficit”, the report urges an attendance to our “global footprint” which “now exceeds the world’s capacity to regenerate by about 30 per cent” (1). Angela Crombie’s A Lighter Footprint, an instruction manual for sustainable living, is one of a host of media through which individuals are educated in modes of footprint calculation and management. She presents a range of techniques, including carbon offsetting, shifting to sustainable modes of transport, eating and buying differently, recycling and conserving water, to mediate our carbon dioxide output, and to “show […] politicians how easy it is” (13). Governments however, need no persuading from citizens that carbon calculation is an exercise to be harnessed. As governments around the world move (slowly) to address climate change, policies that instrumentalise carbon dioxide emission and reduction via an auditing of credits and deficits have come to the fore—for example, the European Union Emissions Trading Scheme and the Chicago Climate Exchange. In Australia, we have the currently-under-debate Carbon Pollution Reduction Scheme, a part of which is the Australian Emissions Trading Scheme (AETS) that will introduce a system of “carbon credits” and trading in a market-based model of supply and demand. This initiative will put a price on carbon dioxide emissions, and cap the amount of emissions any one polluter can produce without purchasing further credits. In readiness for the scheme, business initiatives are forming to take advantage of this new carbon market. Industries in carbon auditing and off-setting services are consolidating; hectares of trees, already active in the carbon sequestration market, are being cultivated as “carbon sinks” and key sites of compliance for polluters under the AETS. Governments are also planning to turn their tracts of forested public land into carbon credits worth billions of dollars (Arup 7). The attachment of emission measures to goods and services requires a range of calculative experts, and the implementation of new marketing and branding strategies, aimed at conveying the carbon “health” of a product. The introduction of “food mile” labelling (the amount of carbon dioxide emitted in the transportation of the food from source to consumer) in certain supermarkets in the United Kingdom is an example of this. Carbon risk analysis and management programs are being introduced across businesses in readiness for the forthcoming “carbon economy”. As one flyer selling “a suite of carbon related services” explains, “early action will give you the edge in understanding and mitigating the risks, and puts you in a prime position to capitalise on the rewards” (MGI Business Solutions Worldwide). In addition, lobby groups are working to ensure exclusions from or the free allocation of permits within the proposed AETS, with degrees of compulsion applied to different industries – the Federal Government, for instance, will provide a $3.9 billion compensation package for the electric power sector when the AETS commences, to enable their “adjustment” to this carbon regime. Performing Life Noortje Mares provides a further means of thinking through the politics of life in the context of climate change by complicating the distinction between public and private interest. Her study of “green living experiments” describes the rise of carbon calculation in the home in recent years, and the implementation of technologies such as the smart electricity meter that provides a constantly updating display of data relating to amounts and cost of energy consumed and the carbon dioxide emitted in the routines of domestic life. Her research tracks the entry of these personal calculative regimes into public life via internet forums such as blogs, where individuals notate or discuss their experiences of pursing low-carbon lifestyles. On the one hand, these calculative practices of living and their public representation can be read as evidencing the pervasive neo-liberal governmentality at work in contemporary environmental practice, where individuals are encouraged to scrupulously monitor their domestic cultures. The rise of auditing as a technology of self, and more broadly as a technique of public accountability, has come under fire for its “immunity-granting role” (Charkiewicz 79), where internal audits become substituted for external compliance and regulation. Mares challenges this reading, however, by demonstrating the ways in which green living experiments “transform everyday material practices into practices of public involvement” that (118) don’t resolve or pin down relations between the individual, the non-human environment, and the social, or reveal a mappable flow of actions and effects between the public realm and the home. The empirical modes of publicity that these individuals employ, “the careful recording of measurements and the reliable descriptions of sensory observation, so as to enable ‘virtual witnessing’ by wider audiences”, open up to much more complex understandings than one of calculative self-discipline at work. As “instrument[s] of public involvement” (120), the experiments that Mares describe locate the politics of life in the embodied socio-material entanglements of the domestic sphere, in arrangements of humans and non-human technologies. Such arrangements, she suggests, are ontologically productive in that they introduce “not only new knowledge, but also new entities […] to society” (119), and as such these experiments and the modes of calculation they employ become active in the composition of reality. Recent work in economic sociology and cultural studies has similarly contended that calculation, far from either a naturalised or thoroughly abstract process, relies upon a host of devices, relations, and techniques: that is, as Gay Hawkins explains, calculative processes “have to be enacted” (108). Environmental governmentality in the service of securing life is a networked practice that draws in a host of actors, not a top-down imposition. The institution of carbon economies and carbon emissions as a new register of public accountability, brings alternative ways to calculate the world into being, and consequently re-calibrates life as it emerges from these heterogeneous arrangements. All That Gathers Latour writes that we come to know a matter of concern by all the things that gather around it (Latour). This includes the human, as well as the non-human actors, policies, practices and technologies that are put to work in the making of our realities. Climate change is routinely represented as a threat to life, with predicted (and occurring) species extinction, growing numbers of climate change refugees, dispossessed from uninhabitable lands, and the rise of diseases and extreme weather scenarios that put human life in peril. There is no doubt, of course, that climate change does mean death for some: indeed, there are thanopolitical overtones in inequitable relations between the fall-out of impacts from major polluting nations on poorer countries, or those much more susceptible to rising sea levels. Biosocial equity, as Bull points out, is a “matter of being equally alive and equally dead” (2). Yet in the biopolitical project of assuring living, life is burgeoning around the problem of climate change. The critique of neo-liberalism as a blanketing system that subjects all aspects of life to market logic, and in which the cynical techniques of industry seek to appropriate ethico-political stances for their own material ends, are insufficient responses to what is actually unfolding in the messy terrain of climate change and its biopolitics. What this paper has attempted to show is that there is no particular purchase on life that can be had by any one actor who gathers around this concern. Varying interests, ambitions, and intentions, without moral hierarchy, stake their claim in life as a constantly constituting site in which they participate, and from this perspective, the ways in which we understand life to be both produced and managed expand. This is to refuse either an opposition or a conflation between the market and nature, or the market and life. It is also to argue that we cannot essentialise human-ness in the climate change debate. For while human relations with animals, plants and weathers may make us what we are, so too do our relations with (in a much less romantic view) non-human things, technologies, schemes, and even markets—from carbon auditing services, to the label on a tin on the supermarket shelf. As these intersect and entangle, the project of life, in the new politics of climate change, is far from straightforward. References An Inconvenient Truth. Dir. Davis Guggenheim. Village Roadshow, 2006. Arup, Tom. “Victoria Makes Enormous Carbon Stocktake in Bid for Offset Billions.” The Age 24 Sep. 2009: 7. Bratich, Jack Z., Jeremy Packer, and Cameron McCarthy. “Governing the Present.” Foucault, Cultural Studies and Governmentality. Ed. Bratich, Packer and McCarthy. Albany: State University of New York Press, 2003. 3-21. Bull, Malcolm. “Globalization and Biopolitics.” New Left Review 45 (2007): 12 May 2009 . < http://newleftreview.org/?page=article&view=2675 >. Charkiewicz, Ewa. “Corporations, the UN and Neo-liberal Bio-politics.” Development 48.1 (2005): 75-83. Clark, Nigel, and Nick Stevenson. “Care in a Time of Catastrophe: Citizenship, Community and the Ecological Imagination.” Journal of Human Rights 2.2 (2003): 235-246. Crombie, Angela. A Lighter Footprint: A Practical Guide to Minimising Your Impact on the Planet. Carlton North, Vic.: Scribe, 2007. Di Muzio, Tim. “Governing Global Slums: The Biopolitics of Target 11.” Global Governance. 14.3 (2008): 305-326. Elden, Stuart. “Governmentality, Calculation and Territory.” Environment and Planning D: Society and Space 25 (2007): 562-580. Hawkins, Gay. The Ethics of Waste: How We Relate to Rubbish. Sydney: University of New South Wales Press, 2006. Latour, Bruno. “Why Has Critique Run Out of Steam?: From Matters of Fact to Matters of Concern.” Critical Inquiry 30.2 (2004): 225-248. Mares, Noortje. “Testing Powers of Engagement: Green Living Experiments, the Ontological Turn and the Undoability and Involvement.” European Journal of Social Theory 12.1 (2009): 117-133. MGI Business Solutions Worldwide. “Carbon News.” Adelaide. 2 Aug. 2009. Ong, Aihwa. “Mutations in Citizenship.” Theory, Culture and Society 23.2-3 (2006): 499-505. Potter, Emily. “Footprints in the Mallee: Climate Change, Sustaining Communities, and the Nature of Place.” Landscapes and Learning: Place Studies in a Global World. Ed. Margaret Somerville, Kerith Power and Phoenix de Carteret. Sense Publishers. Forthcoming. Rabinow, Paul, and Nikolas Rose. “Biopower Today.” Biosocieties 1 (2006): 195-217. Rose, Nikolas. “The Politics of Life Itself.” Theory, Culture and Society 18.6 (2001): 1-30. World Wildlife Fund. Living Planet Report 2008. Switzerland, 2008.
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47

Foith, Michael. "Virtually Witness Augmentation Now: Video Games and the Future of Human Enhancement." M/C Journal 16, no. 6 (November 6, 2013). http://dx.doi.org/10.5204/mcj.729.

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Abstract:
Introduction Ever-enduring advancements in science and technology promise to offer solutions to problems or simply to make life a bit easier. However, not every advancement has only positive effects, but can also have undesired, negative ramifications. This article will take a closer look at Deus Ex: Human Revolution (DXHR), a dystopian video game which promises to put players in the position of deciding whether the science of human enhancement is a way to try to play God, or whether it enables us “to become the Gods we’ve always been striving to be” (Eidos Montreal, “Deus Ex: Human Revolution”). In this article I will argue that DXHR creates a space in which players can virtually witness future technologies for human performance enhancement without the need to alter their own bodies. DXHR is special particularly in two respects: first, the developers have achieved a high credibility and scientific realism of the enhancement technologies depicted in the game which can be described as being “diegetic prototypes” (Kirby, “The Future Is Now ” 43); second, the game directly invites players to reflect upon the impact and morality of human enhancement. It does so through a story in line with the cyberpunk genre, which envisions not only the potential benefits of an emergent technology, but has an even stronger focus on the negative contingencies. The game and its developers foresee a near-future society that is split into two fractions due to human enhancement technologies which come in the form of neuro-implants and mechanical prosthetics; and they foresee a near-future setting in which people are socially and economically forced to undergo enhancement surgery in order to keep up with the augmented competition. DXHR is set in the year 2027 and the player takes control of Adam Jensen, an ex-SWAT police officer who is now the chief of security of Sarif Industries, one of the world's leading biotechnology companies that produce enhancement technologies. Augmented terrorists attack Sarif Industries, abduct the head scientists, and nearly kill Jensen. Jensen merely survives because his boss puts him through enhancement surgery, which replaces many parts of his body with mechanical augmentations. In the course of the game it becomes clear that Jensen has been augmented beyond any life-saving necessity that grants him superhuman abilities and allows him to find and defeat the terrorists, but the augmentations also challenge his humanity. Is Jensen a human, a cyborg, or has he become more machine than man? DXHR grants players the illusion of immersion into a virtual world in which augmentations exist as a matter of fact and in which a certain level of control can be practiced. Players take up the role of a character distinctly more powerful and capable than the person in control, exceeding the limits of human abilities. The superior abilities are a result of scientific and technological advancements implying that every man or woman is able to attain the same abilities by simply acquiring augmentations. Thus, with the help of the playable character, Adam Jensen, the game lets players experience augmentations without any irreparable damages done to their bodies, but the experience will leave a lasting impression on players regarding the science of human enhancement. The experience with augmentations happens through and benefits from the effect of “virtual witnessing”: The technology of virtual witnessing involves the production in a reader’s mind of such an image of an experimental scene as obviates the necessity for either direct witness or replication. Through virtual witnessing the multiplication of witnesses could be, in principle, unlimited. (Shapin and Schaffer 60) In other words, simply by reading about and/or seeing scientific advancements, audiences can witness them without having to be present at the site of creation. The video game, hereby, is itself the medium of virtual witnessing whereby audiences can experience scientific advancements. Nevertheless, the video game is not just about reading or seeing potential future enhancement technologies, but permits players to virtually test-drive augmentations—to actually try out three-dimensionally rendered prototypes on a virtual body. In order to justify this thesis, a couple of things need to be clarified that explain in which ways the virtual witnessing of fictional enhancements in DXHR is a valid claim. Getting into the Game First I want to briefly describe how I investigated the stated issue. I have undertaken an auto-ethnography (Ellis, Adams, and Bochner) of DXHR, which concretely means that I have analytically played DXHR in an explorative fashion (Aarseth) trying to discover as many elements on human enhancement that the game has to offer. This method requires not only close observation of the virtual environment and documentation through field notes and screenshots, but also self-reflection of the actions that I chose to take and that were offered to me in the course of the game. An essential part of analytically playing a game is to be aware that the material requires “the activity of an actual player in order to be accessible for scrutiny” (Iversen), and that the player’s input fundamentally shapes the gaming experience (Juul 42). The meaning of the game is contingent upon the contribution of the player, especially in times in which digital games grant players more and more freedom in terms of narrative construction. In contrast to traditional narrative, the game poses an active challenge to the player which entails the need to become better in relation to the game’s mechanics and hence “studying games … implies interacting with the game rules and exploring the possibilities created by these rules, in addition to studying the graphical codes or the narration that unfolds” (Malliet). It is important to highlight that, although the visual representation of human enhancement technologies has an enormous potential impact on the player’s experience, it is not the only crucial element. Next to the representational shell, the core of the game, i.e. “how game rules and interactions with game objects and other players are structured” (Mäyrä 165), shapes the virtual witnessing of the augmentations in just an important way. Finally, the empirical material that was collected was analyzed and interpreted with the help of close-reading (Bizzocchi and Tanenbaum 395). In addition to the game itself, I have enriched my empirical material with interviews of developers of the game that are partly freely available on the Internet, and with the promotional material such as the trailers and a website (Eidos Montreal, “Sarif Industries”) that was released prior to the game. Sociotechnical Imaginaries In this case study of DXHR I have not only investigated how augmented bodies and enhancement technologies are represented in this specific video game, but also attempted to uncover which “sociotechnical imaginaries” (Jasanoff and Kim) underlie the game and support the virtual witnessing experience. Sociotechnical imaginaries are defined as “collectively imagined forms of social life and social order reflected in the design and fulfillment of nation-specific scientific and/or technological projects” (Jasanoff and Kim 120). The concept appeared to be suitable for this study as it covers and includes “promises, visions and expectations of future possibilities” (Jasanoff and Kim 122) of a technology as well as “implicit understandings of what is good or desirable in the social world writ large” (Jasanoff and Kim 122–23). The game draws upon several imaginaries of human enhancement. For example, the most basic imaginary in the game is that advanced engineered prosthetics and implants will be able to not only remedy dysfunctional parts of the human body, but will be able to upgrade these. Apart from this idea, the two prevailing sociotechnical imaginaries that forward the narrative can be subsumed as the transhumanist and the purist imaginary. The latter views human enhancement, with the help of science and technology, as unnatural and as a threat to humanity particularly through the power that it grants to individuals, while the former transports the opposing view. Transhumanism is: the intellectual and cultural movement that affirms the possibility and desirability of fundamentally improving the human condition through applied reason, especially by developing and making widely available technologies to eliminate aging and to greatly enhance human intellectual, physical, and psychological capacities. (Chrislenko et al.) The transhumanist imaginary in the game views technological development of the body as another step in the human evolution, not as something abhorrent to nature, but a fundamental human quality. Similar ideas can be found in the writings of Sigmund Freud and Arnold Gehlen, who both view the human being’s need to improve as part of its culture. Gehlen described the human as a “Mängelwesen”—a ‘deficient’ creature—who is, in contrast to other species, not specialized to a specific environment, but has the ability to adapt to nearly every situation because of this deficiency (Menne, Trutwin, and Türk). Freud even denoted the human as a “Prothesengott”—a god of prostheses: By means of all his tools, man makes his own organs more perfect—both the motor and the sensory—or else removes the obstacles in the way of their activity. Machinery places gigantic power at his disposal which, like his muscles, he can employ in any direction; ships and aircraft have the effect that neither air nor water can prevent his traversing them. With spectacles he corrects the defects of the lens in his own eyes; with telescopes he looks at far distances; with the microscope he overcomes the limitations in visibility due to the structure of his retina. (Freud 15) Returning to DXHR, how do the sociotechnical imaginaries matter for the player? Primarily, the imaginaries cannot be avoided as they pervade nearly every element in the game, from the main story that hinges upon human enhancement over the many optional side missions, to contextual elements such as a conference on “the next steps in human evolution” (Eidos Montreal, “Deus Ex: Human Revolution”). Most importantly, it impacts the player’s view in a crucial way. Human enhancement technologies are presented as controversial, neither exclusively good nor bad, which require reflection and perhaps even legal regulation. In this way, DXHR can be seen as offering the player a restricted building set of sociotechnical imaginaries of human enhancement, whereby the protagonist, Adam Jensen, becomes the player’s vessel to construct one’s own individual imaginary. In the end the player is forced to choose one of four outcomes to complete the game, and this choice can be quite difficult to make. Anticipation of the Future It is not unusual for video games to feature futuristic technologies that do not exist in the real world, but what makes DXHR distinct from others is that the developers have included an extent of information that goes beyond any game playing necessity (see Figures 1 & 2). Moreover, the information is not fictional but the developers have taken strategic steps to make it credible. Mary DeMarle, the narrative designer, explained at the San Diego Comic-Con in 2011, that a timeline of augmentation was created during the production phase in which the present state of technology was extrapolated into the future. In small incremental steps the developers have anticipated which enhancement technologies might be potentially feasible by the year 2027. Their efforts were supported by the science consultant, Will Rosellini, who voluntarily approached the development team to help. Being a neuroscientist, he could not have been a more fitting candidate for the job as he is actively working and researching in the biotechnology sector. He has co-founded two companies, MicroTransponder Inc., which produces tiny implantable wireless devices to interface with the nervous system to remedy diseases (see Rosellini’s presentation at the 2011 Comic-Con) and Rosellini Scientific, which funds, researches and develops advanced technological healthcare solutions (Rosellini; Rosellini Scientific). Due to the timeline which has been embedded explicitly and implicitly, no augmentation appears as a disembodied technology without history in the game. For example, although the protagonist wears top-notch military arm prostheses that appear very human-like, this prosthesis is depicted as one of the latest iterations and many non-playable characters possess arm prostheses that appear a lot older, cruder and more industrial than those of Jensen. Furthermore, an extensive description employing scientific jargon for each of the augmentations can be read on the augmentation overview screen, which includes details about the material composition and bodily locations of the augmentations. Figure 1: More Info Section of the Cybernetic Arm Prosthesis as it appears in-game (all screenshots taken with permission from Deus Ex: Human Revolution (2011), courtesy of Eidos Montreal) More details are provided through eBooks, which are presented in the form of scientific articles or conference proceedings, for which the explorative gamer is also rewarded with valuable experience points upon finding which are used to activate and upgrade augmentations. The eBooks also reflect the timeline as each eBook is equipped with a year of publication between 2001 and 2022. Despite the fact that these articles have been supposedly written by a fictional character, the information is authentic and taken from actual scientific research papers, whereby some of these articles even include a proper scientific citation. Figure 2: Example of a Darrow eBook The fact that a scientist was involved in the production of the game allows classifying the augmentations as “diegetic prototypes” which are “cinematic depictions of future technologies … that demonstrate to large public audiences a technology’s need, benevolence and viability” (“The Future Is Now” 43). Diegetic prototypes are fictional, on-screen depictions of technologies that do not exist in that form in real life and have been created with the help of a science consultant. They have been placed in movies to allay anxieties and doubts and perhaps to even provoke a longing in audiences to see depicted technologies become reality (Kirby, “The Future Is Now” 43). Of course the aesthetic appearance of the prototypes has an impact on audiences’s desire, and particularly the artificial arms of Jensen that have been designed in an alluring fashion as can be seen in the following figure: Figure 3: Adam Jensen and arm prosthesis An important fact about diegetic prototypes—and about prototypes (see Suchman, Trigg, and Blomberg) in general—is that they are put to specific use and are embedded and presented in an identifiable social context. Technological objects in cinema are at once both completely artificial—all aspects of their depiction are controlled—and normalized as practical objects. Characters treat these technologies as a ‘natural’ part of their landscape and interact with these prototypes as if they are everyday parts of their world. … fictional characters are ‘socializing’ technological artifacts by creating meanings for the audience, ‘which is tantamount to making the artifacts socially relevant’. (Kirby, “Lab Coats” 196) The power of DXHR is that the diegetic prototypes—the augmentations—are not only based on real world scientific developments and contextualized in a virtual social space, but that the player has the opportunity to handle the augmentations. Virtual Testing Virtual witnessing of the not-yet-existent augmentations is supported by scientific descriptions, articles, and the appearance of the technologies in DXHR, but the moral and ethical engagement is established by the player’s ability to actively use the augmentations and by the provision of choice how to use them. As mentioned, most of the augmentations are inactive and must first be activated by accumulating and spending experience points on them. This requires the player to make reflections on the potential usage and how a particular augmentation will lead to the successful completion of a mission. This means that the player has to constantly decide how s/he wants to play the game. Do I want to be able to hack terminals and computers or do I rather prefer getting mission-critical information by confronting people in conversation? Do I want to search for routes where I can avoid enemy detection or do I rather prefer taking the direct route through the enemy lines with heavy guns in hands? This recurring reflection of which augmentation to choose and their continuous usage throughout the game causes the selected augmentations to become valuable and precious to the player because they transform from augmentations into frequently used tools that facilitate challenge and reduce difficulty of certain situations. In addition, the developers have ensured that no matter which approach is taken, it will always lead to success. This way the role-playing elements of the game are accentuated and each player will construct their own version of Jensen. However, it may be argued that DXHR goes beyond mere character building. There is a breadth of information and opinions on human enhancement offered, but also choices that are made invite players to reflect upon the topic of human enhancement. Among the most conspicuous instances in the game, that involve the player’s choice, are the conversations with other non-playable characters. These are events in the game which require the player to choose one out of three responses for Jensen, and hence, these determine to some extent Jensen’s attitude towards human enhancement. Thus, in the course of the game players might discover their own conviction and might compose their own imaginary of human enhancement. Conclusion This article has explored that DXHR enables players to experience augmentations without being modified themselves. The game is filled with various sociotechnical imaginaries of prosthetic and neurological human enhancement technologies. The relevance of these imaginaries is increased by a high degree of credibility as a science consultant has ensured that the fictional augmentations are founded upon real world scientific advancements. The main story, and much of the virtual world, hinge upon the existence and controversy of these sorts of technologies. Finally, the medium ‘videogame’ allows taking control of an individual, who is heavily augmented with diegetic prototypes of future enhancement technologies, and it also allows using and testing the increased abilities in various situations and challenges. All these elements combined enable players to virtually witness not-yet-existent, future augmentations safely in the present without the need to undertake any alterations of their own bodies. This, in addition to the fact that the technologies are depicted in an appealing fashion, may create a desire in players to see these augmentations become reality. Nevertheless, DXHR sparks an important incentive to critically think about the future of human enhancement technologies.References Aarseth, Espen. “Playing Research: Methodological Approaches to Game Analysis.” DAC Conference, Melbourne, 2003. 14 Apr. 2013 ‹http://hypertext.rmit.edu.au/dac/papers/Aarseth.pdf›. Bizzocchi, J., and J. Tanenbaum. “Mass Effect 2: A Case Study in the Design of Game Narrative.” Bulletin of Science, Technology & Society 32.5 (2012): 393-404. Chrislenko, Alexander, et al. “Transhumanist FAQ.” humanity+. 2001. 18 July 2013 ‹http://humanityplus.org/philosophy/transhumanist-faq/#top›. Eidos Montreal. “Deus Ex: Human Revolution.” Square Enix. 2011. PC. ———. “Welcome to Sarif Industries: Envisioning a New Future.” 2011. 14 Apr. 2013 ‹http://www.sarifindustries.com›. Ellis, Carolyn, Tony E. Adams, and Arthur P. Bochner. “Autoethnography: An Overview.” Forum Qualitative Sozialforschung 12.1 (2010): n. pag. 9 July 2013 ‹http://www.qualitative-research.net/index.php/fqs/article/view/1589/3095›. Freud, Sigmund. Civilization and Its Discontents. Aylesbury, England: Chrysoma Associates Limited, 1929. Iversen, Sara Mosberg. “In the Double Grip of the Game: Challenge and Fallout 3.” Game Studies 12.2 (2012): n. pag. 5 Feb. 2013 ‹http://gamestudies.org/1202/articles/in_the_double_grip_of_the_game›. Jasanoff, Sheila, and Sang-Hyun Kim. “Containing the Atom: Sociotechnical Imaginaries and Nuclear Power in the United States and South Korea.” Minerva 47.2 (2009): 119–146. Juul, Jesper. “A Clash between Game and Narrative.” MA thesis. U of Copenhagen, 1999. 29 May 2013 ‹http://www.jesperjuul.net/thesis/›. Kirby, David A. Lab Coats in Hollywood. Cambridge, Massachusetts: MIT Press, 2011. ———. “The Future Is Now : Diegetic Prototypes and the Role of Popular Films in Generating Real-World Technological Development.” Social Studies of Science 40.1 (2010): 41-70. Malliet, Steven. “Adapting the Principles of Ludology to the Method of Video Game Content Analysis Content.” Game Studies 7.1 (2007): n. pag. 28 May 2013 ‹http://gamestudies.org/0701/articles/malliet›. Mäyrä, F. An Introduction to Game Studies. London: Sage, 2008. Menne, Erwin, Werner Trutwin, and Hans J. Türk. Philosophisches Kolleg Band 4 Anthropologie. Düsseldorf: Patmos, 1986. Rosellini, Will, and Mary DeMarle. “Deus Ex: Human Revolution.” Comic Con. San Diego, 2011. Panel. Rosellini Scientific. “Prevent. Restore. Enhance.” 2013. 25 May 2013 ‹http://www.roselliniscientific.com›. Shapin, Steven, and Simon Schaffer. Leviathan and the Air Pump: Hobbes, Boyle and the Experimental Life. Princeton: Princeton University Press, 1985. Suchman, Lucy, Randall Trigg, and Jeanette Blomberg. “Working Artefacts: Ethnomethods of the Prototype.” The British Journal of Sociology 53.2 (2002): 163-79. Image Credits All screenshots taken with permission from Deus Ex: Human Revolution (2011), courtesy of Eidos Montreal.
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