Journal articles on the topic 'AIDS (Disease) Treatment Moral and ethical aspects'

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.

In recent years, the interest in corporate social responsibility issues has shown an increase. Worldwide problems, especially those related to HIV/AIDS, caught public attention towards Corporate Social Responsibility (CSR) themes. In a country with more people living with HIV/AIDS than in any other nation (UNAIDS 2007), prevention and treatment is critical. HIV/AIDS is seen to be threatening the communities in which businesses are functioning and is further threatening the business itself. This article examines the moral and social responsibility of the corporate sector in its effort to deal with the issue of HIV/AIDS. Big business leaders have recognized the threat of HIV/AIDS to the workplace and have positioned responses towards the disease from an ethical, legal and cost-effective business perspective; however the response from small to medium businesses is relatively weak. This article conveys a descriptive critique, based on bibliographic research on Corporate Social Responsibility, HIV/AIDS and related concepts.

In recent years, the interest in corporate social responsibility issues has shown an increase. Worldwide problems, especially those related to HIV/AIDS, caught public attention towards Corporate Social Responsibility (CSR) themes. In a country with more people living with HIV/AIDS than in any other nation (UNAIDS 2007), prevention and treatment is critical. HIV/AIDS is seen to be threatening the communities in which businesses are functioning and is further threatening the business itself. This article examines the moral and social responsibility of the corporate sector in its effort to deal with the issue of HIV/AIDS. Big business leaders have recognized the threat of HIV/AIDS to the workplace and have positioned responses towards the disease from an ethical, legal and cost-effective business perspective; however the response from small to medium businesses is relatively weak. This article conveys a descriptive critique, based on bibliographic research on Corporate Social Responsibility, HIV/AIDS and related concepts.

Abstract Like medicine, ethics is a practical discipline, which they acquire the knowledge of the general principles and skills to solve problems. Long term care involves both clinical and ethical issues in medicine. Effective medical education of long-suffering patients has to be focusing on increasing their adherence to treatment. The occurrence of AIDS pandemic has changed the physician’s way of thinking in terms of ethics in general, and in medicine in particular. HIV/AIDS has focused attention on deficiencies in the field of therapy, long care issues, medical training and education of the patients, as well as in deontology. The treatment of HIV infected patients with all new drugs discovered is not yet completely curative and the association of opportunistic infections, as tuberculosis (TB), is representing a permanent challenge for therapist. Both ethical and medical training in general as regards AIDS and TB, should focus mainly on exposed people and learning through experience, to form skills that would make doctors to work with sensitivity in regard to sexuality, substance abuse, lack of treatment, relapses of disease and even death. In the same time, any ethical or cultural environment can enrich and support the real moral education of medical staff. Medical ethics and ethics relating specifically to TB and HIV/AIDS, often meet highly complex problems. Alternative possibilities and decisions to take of what is right or wrong may create a real ethical, clinical and therapeutic dilemma.

In the research ethics literature, there is strong disagreement about the ethical acceptability of placebo-controlled trials, particularly when a tested therapy aims to alleviate a condition for which standard treatment exists. Recently, this disagreement has given rise to debate over the moral appropriateness of the principle of clinical equipoise for medical research. Underlying these debates are two fundamentally different visions of the moral obligations that investigators owe their subjects.Some commentators and ethics documents claim that physicians, whether acting as care givers or researchers, have the same duty of beneficence towards their patients and subjects: namely, that they must provide optimal medical care. In discussing placebo surgery in research on refractory Parkinson's disease, Peter Clark succinctly states this view: “The researcher has an ethical responsibility to act in the best interest of subjects.”

Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians’ and nurses’ perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient’s decision-making process, The challenge awaiting the family members’ processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient’s possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

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.

Overview Objective: The aim of this research is to present our experiences with the surgical treatment of gynecological patients among Jehovah’s Witnesses. Moreover, the medical, moral, and ethical problems in this regard have been highlighted. Methods: 75 Jehovah’s Witnesses patients were operated on for various benign and malignant gynecological diseases between 2007 and 2018. All of these patients were operated on according to the rules of blood-sparing surgery. Results: The operations were assessed according to the dia­gnosis, mode of surgery, estimated blood loss, and disease outcome. Excessive blood loss did not occur during any of these operations, and the estimated blood loss for the same procedure was 10 to 550 mL. Conclusion: Jehovah’s Witnesses gynecological patients is a group of high-risk patients because they refuse to undergo blood transfusion. Nevertheless, the principles of blood-sparing surgery should be applied to not only Jehovah’s Witnesses patients but also to all patients in general. Even if a blood transfusion is the last resort to solve issues pertaining to excessive blood loss during complicated operations, the said procedure always carries certain risks. Therefore, blood transfusion should be performed only on rare occasions. Jehovah’s Witnesses patients categorically refuse blood transfusion even if it is the only way to save one’s life. Even though the legislation of the Czech Republic deals with this problem, there are other moral and ethical aspects that need to be addressed in this regard. Keywords: bloodless surgery – Gynecologic surgery – Jehovah’s Witnesses – legislation – moral and ethical problems

The first case of HIV infection was reported in Nigeria in1986. Since then, the prevalence has risen from less than 0.1% in 1987 to 5.8% in 2002, and an estimated 3.6 million Nigerians now live with HIV/AIDS. More than 40 oral manifestations of HIV infection have been recorded and between 70% and 90% of persons with HIV infection will have at least one oral manifestation at sometime during the course of their disease. Oral health-care workers (OHCWS) are expected to play active roles in the prevention and control of HIV/AIDS. In this study, a one-day workshop was organized for 64 oral health workers in Ile-Ife, Nigeria, focusing on the epidemiology of HIV/AIDS, the oral manifestations, control and prevention of HIV in a dental environment, oral care of the infected patient and the ethical, legal and social aspects of HIV/AIDS. Participants' knowledge and practices of infection control were assessed with an infection control checklist administered pre- and post-workshop. Sixty (90.8%) respondents believed that HIV/AIDS was not yet a problem in Nigeria, and 58 (90.6%) believed that drugs have been developed which can cure HIV infection and AIDS. The men complied more with waste disposal regulations than women ( P=0.010). Twenty-nine of 58 (50.0%) did not discard gloves which were torn, cut or punctured. Seven (12.1%) did not change gloves between patients' treatment. Conscious efforts should be made to train OHCWS on all aspects of HIV/AIDS prevention and care. It must never be assumed that adequate information will be acquired through tangential sources.

Both sperm and embryo cryopreservation have become routine procedures in human assisted reproduction and oocyte cryopreservation is being introduced into clinical practice and is getting more and more widely used. Embryo cryopreservation has decreased the number of fresh embryo transfers and maximized the effectiveness of the IVF cycle. The data shows that women who had transfers of fresh and frozen embryos obtained 8% additional births by using their cryopreserved embryos. Oocyte cryopreservation offers more advantages compared to embryo freezing, such as fertility preservation in women at risk of losing fertility due to oncological treatment or chronic disease, egg donation, and postponing childbirth, and eliminates religious and/or other ethical, legal, and moral concerns of embryo freezing. In this review, the basic principles, methodology, and practical experiences as well as safety and other aspects concerning slow cooling and ultrarapid cooling (vitrification) of human embryos and oocytes are summarized.

Introduction: The main priorities of the implemented health policies in the Republic of Bulgaria are directly aimed at preserving and improving the health of the population, providing equal access of patients to modern and efficient healthcare, promptness and quality, in compliance with the normative requirements of the offered health service. In this sense, the focus of these health policies is to prioritize prevention and prophylaxis of early diagnosis of diseases. It is much more reasonable to prevent the disease or to manage it at an early stage than to slow down the treatment until the pathological processes develop into severe or irreversible complications. Aim: The aim of this systematic review is to investigate the effectiveness of existing legal acts governing the implementation of a common health policy in the field of health promotion and prevention. Another aim is to localize regulatory gaps and make relevant optimization suggestions. Materials and methods: The analysis of this systematic review is based on a thorough review of the existing regulatory framework (statutory and regulative legislation, case law, European practice) that concerns public health. Articles focused directly on the issues of medical screening and public health in a national and global perspective have been studied.Results: Two major legal acts, two regulations and strategies of the World Health Organization are considered. Suggestions for optimization of the control activity of the administrative bodies in the sector are presented. Conclusions: From the analysis done, proposals for optimization of the existing legal framework in the sector of health-care were made. The proposals were made based on the results of the analysis of w8orld trends regarding the methodology for state funding of medical screening for early diagnosis of diseases. The issue in question is up to date and raises issues related to legislative regulation, moral, ethical and deontological principles to which the medical profession adheres, as well as the health policy that is followed by the Ministry of Health in this aspect.

Background: Patient autonomy in the health care system is achieved by the vital principle of providing informed consent. Throughout history, informed consent gained recognition and improved to include more aids and steps to formalize and standardize the process of obtaining proper consent in medical and dental practice. Regardless of the type of informed consent obtained before the treatment, it should include an adequate understandable description of nature and diagnosis of the disease, treatment plan, proper alternatives, risks, and limitations. Summary: There is limited information in the ethics literature covering critical concepts related to different dental procedures in Saudi Arabia. In Saudi Arabia, informed consent in dentistry is not well-documented. As everything is evolving and changing in Saudi society, litigation has progressed and impacted dentistry. This overview will help in addressing aspects related to informed consent and closing the gaps in the dental health care system in Saudi Arabia, managing complex ethical issues associated with dental patients. In addition, providing recommendations and shedding some light on the importance of informed consent will improve the situation of the informed consent process in Saudi Arabia. Key Messages: Informed consent allows patients to be part of the decision-making process, and it provides legal protection for the practitioners from practice lawsuit cases. Dentists should take extra care in documenting the consent process and patient’s choice regarding their treatment to avoid unfavorable consequences. In Saudi Arabia, attention should be drawn toward the crucial role of informed consent, and more studies should be published in order to enrich the knowledge and to improve the health care system.

<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>

During the COVID-19 pandemic, nurses experienced tremendous dilemmas including the need to perform their duties in caring for patients while they have concerns about contracting the disease. This study described the moral distress of nurses in-charge of handling COVID-19 patients which can be used as baseline data for intervention programs in overcoming moral distress among nurses. This descriptive, cross-sectional study was conducted with nurses in-charge of handling COVID-19 treatment rooms. Before conducting the survey, ethical approval was obtained from the Medical Faculty of Universitas Hasanuddin. Questionnaires on moral distress for clinical nurses and the demographic data questionnaire were distributed to 128 respondents. These nurses experienced relatively low levels of moral distress despite the fact that they were generally exposed to morally stressful situations. Education background appeared as a factor influencing this condition, in which higher moral distress was mostly experienced by nurses with undergraduate education.

Abstract Background Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson’s disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending. Objective To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion. Methods Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities. Results The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.

he end of the twentieth century and the beginning of the twentyfirst century has begun the rapid development of scientific researches in the biological and medical fields. This process is associated with using of fundamentally new methods, which are primarily aimed at the disease prevention, as well as the introduction into the treatment of human diseases with the latest scientific and innovative technologies, methods and techniques of their application. These opportunities in the development of scientific technologies in the field of biology and medicine have led to the emergence of such a direction of scientific activity as "biotechnology". The proposed article notes that using of biomedical technologies has caused a number of new problems in the field of law and ethics. Legal arrangement in the field of the health protection have become much more complicated. Thanks to new opportunities, today these relations regulate rights and responsibilities of a fairly large number of people. Modern relations in the field of medical services and medical care lead to the emergence of new approaches to their regulation by both legal and ethical norms. In the past, relations in the field of the health protection were usually between two subjects, a doctor and a healthcare consumer. Nowadays, in a medical practice, relations in the field of the health protection involve: a health-care consumer, his family members (e.g., in the case of hereditary diseases diagnosis, blood and organ donation etc.) and third parties (e.g., organ donation, reproductive cell donation, surrogacy etc.). In the general doctrinal concept, biotechnology is the industrial use of living organisms or their parts (microorganisms, fungi, algae, plant and animal cells, cellular organs, enzymes etc.) for product producing or modifying, improving plants and animals, and in medical practice - in relation of the individual human organs (or body as a whole) functioning. These circumstances require improving the legal regulation of modern medicine public relations, bringing them into line with emerging realities. Moreover, the specifics of relations in this field determines the specifics of their legal regulation. The application of new medical technologiesin relation to human treatment has given rise to a significant number of moral and ethical problems that could not be solved within the framework of medical ethics and deontology alone. In connection with this, the way out of the current situation could be the consolidation of bioethics as an interdisciplinary field of knowledge, as a science, which makes it possible to explain moral, ethical and legal aspects of the medicine. This, for example, determines the allocation of medical law in an independent branch of law in some Western countries and Ukraine. The article focuses on biomedical ethics, which is a component of the medical activities system regulation. In the context of considering the levels of social regulation of medical activities, bioethics (biomedical ethics) is an interdisciplinary science that studies moral and ethical, social and legal problems of medical activities in the context of human rights protection. Bioethics should create a set of moral principles, norms and rules that are binding on all mankind and delineate the limits of scientific interference in the nature of the human body, the transition through which is unacceptable.

Healthcare rationing during pandemics has been widely discussed in global bioethics literature. However, existing scenarios and analyses have focused on high income countries, except for very few disease areas such as HIV treatment where some analyses related to African countries exist. We argue that the lack of scholastic discourse, and by extension, professional and democratic engagement on the subject constitute an unacceptable ethical omission. Not only have African governments failed to develop robust ethical plans for pandemics, ethicists in this region have been unable to ignite public discourse on rationing. Therefore, we aim to initiate a debate on how rationing health and social goods could be done ethically in Ghana during the current and future pandemics. The paper discusses and critiques some moral considerations (utilitarian, equity, equal worth, urgent need, and the prioritarian principles) for rationing and their relevance in the Ghanaian context. This contribution may facilitate ethical decision-making during the current (COVID-19) pandemic - in Ghana and other African settings where hardly any rationing guidelines exist

Resumo: Introdução: Dimensões comunicacionais permeiam as práticas dos profissionais de saúde. Desde a criação do SUS (Sistema Único de Saúde), em 1988, no Brasil, são enfatizados princípios como a humanização do cuidado e a valorização dos aspectos relacionais, sociais e culturais na comunicação com usuários e entre profissionais. Com relação à Aids, políticas de saúde buscaram informar e mudar comportamentos, enfatizando o diagnóstico precoce, o tratamento adequado e a prevenção. Apesar da epidemia do HIV ter estimulado muitas inovações na educação e comunicação em saúde, ainda se verificam ações predominantemente prescritivas, baseadas no saber biomédico, responsabilizando indivíduos por seus problemas de saúde. Objetivos: O presente trabalho investigou como a comunicação envolvendo o HIV atualmente é abordada nos cenários de práticas do SUS. Metodologia: Foi realizada uma análise temática de conteúdo em busca bibliográfica na literatura brasileira especializada publicada de 2000 a 2018 na SciELO (Scientific Electronic Library Online). Resultados: Obtivemos 15 artigos que mostram a comunicação utilizada como instrumento de fomento à adesão, prevenção, detecção e tratamento do HIV, mas também como competência para lidar com dilemas éticos e morais. Conclusão: Embora ainda seja restrita, a produção acadêmica em comunicação sobre HIV nos serviços aponta mudanças em direção às necessidades do usuário.Palavras-chave: comunicação; serviços de saúde; Sistema Único de Saúde (SUS); HIV; Aids.Abstract: Introduction: Communication dimensions permeate the practices of health professionals. Since the creation of the Brazilian Health Care System (SUS), in 1988 in Brazil, principles such as humanization of care and appreciation of relational, social and cultural aspects of communication between users and professionals and in professional teams have been emphasized. In relation to AIDS, health policies have sought to inform and change behaviors, emphasizing early diagnosis, appropriate treatment and prevention. Although the HIV epidemic has stimulated the development of technologies in health education and communication, there still predominate prescriptive actions aimed at biomedical knowledge and blaming individuals for their health problems. Objectives: This study investigated how communication regarding HIV has been addressed in SUS practices. Methodology: A thematic analysis of bibliographic search content was carried out in specialized Brazilian literature published from 2000 to 2018 in SciELO (Scientific Electronic Library Online). Results: The 15 articles obtained display communication as a tool to promote adherence, prevention, detection and treatment of HIV, but also point to its importance in dealing with ethical and moral dilemmas. Conclusion: Although it is still restricted, the academic production of HIV communication in services indicates a trend towards addressing the needs of the users.Keywords: communication; health services; Unified Health System (SUS); HIV; Aids.

Photo by Hannah Busing on Unsplash INTRODUCTION Religion has long provided guidance that has led to standards reflected in some aspects of medical practices and traditions. The recent bioethical literature addresses numerous new problems posed by advancing medical technology and demonstrates an erosion of standards rooted in religion and long widely accepted as almost axiomatic. In the deep soul-searching that pervades the publications on bioethics, several disturbing and dangerous trends neglect some basic lessons of philosophy, logic, and history. The bioethics discourse on medical aid in dying emphasizes similarity over previously recognized important distinguishing features. For example, it overplays a likeness between assistance in dying and the withdrawal of life-saving technology. In many bioethics’ topics, arguments based on a logical continuum are used to question the lines demarcating important moral differences. l. The Line Between Ethical and Not: Logic Based on Continuum Careful case selection, often either end of a continuum, allows the tearing down or ridiculing of many rules and codes across most professions and fields of interest. This situation holds true for traffic laws as well as medical ethics guidelines. It is relatively simple for those who desire to attack a particular viewpoint by selecting a case that makes that position seem untenable. In the ethics realm, good and bad medicine exist at opposite ends of an ethical continuum, with many practices lying in between. For example, much of medical ethics exists between the Nazi criminal physicians and the most sainted nurse or physician. A gradual progression occurred over less than two decades from a utilitarian position that supported limited euthanasia for those with certain mental illnesses to genocide. German society embraced a utilitarian ethic in which the value of human life no longer was intrinsic but instrumental.[1] Many morally significant points on a continuum were then ignored as the misguided utilitarian policy rampantly continued. A point in the continuum to distinguish between ethically justifiable and that which is not can be difficult to identify compared to the two extremes. This continuum is not unique to ethics but can be applied to almost any other aspect of human life and endeavor. Between a severely ill schizophrenic person and a superbly well-adjusted individual, there is a continuum of mental and psychological function. The existence of a continuum should not paralyze thinking and prevent us from drawing lines and identifying moral differences based on objective criteria as well as moral philosophy. Yet, by focusing on a continuum, many bioethicists use logic to disregard dividing lines between an "ethical" and an "unethical" act. Unfortunately, sometimes bioethicists draw revolutionary conclusions that would change the scope of medical practices which is accepted as ethical. There are many examples of similar shifts on the continuum. Many authors argue for the ethical permissibility of abortion by pointing out that the human fetus is no different in various characteristics, one arguing it is as like an ape or chick as it is like a person,[2] and does not achieve unique human and individual characteristics until well into the first year of life.[3] While human fetuses arguably do not have certain distinctive qualities of personhood, most people shy away from the logical next conclusion: permitting infanticide. For example, Joshua Lederberg condemns infanticide, in the face of biological illogic, because of our emotional commitment to infants, to me, a relatively weak explanation. Sir Francis Crick suggests we might consider birth at two days of life in order to decide whether an infant is a "suitable" member of society.[4] Giublini and Minerva suggest that infanticide should be permissible since late pregnancy abortions are permissible, arguing there is no significant difference between a fetus just before birth and an infant just after birth.[5] Clearly the continuum approach would allow for subjective arguments in favor of later infanticide at other points many days post-birth. Years ago, with a cynical tone, I mentioned infanticide as a further step on the continuum beyond abortion, and I was rightly shouted down as being deliberately provocative to assert the logic would ever stretch so far. While it is not an accepted mainstream position, the movement in academic settings from widespread condemnation to limited possible acceptance of infanticide has taken place in an incredibly short time. Public opinion and medical opinion in these areas have shifted dramatically in a short time. In another area, from a biological and chemical point of view, there is a continuum from man down to a single carbon atom. Yet, it would not seem logical to ignore the emotional differences, the meaning of personhood, or the moral distinction between killing an insect and killing a person. ll. A False Continuum: Medical Aid in Dying I assert that there has been an erosion of ethical guidelines in recent years attributable to using continuums to camouflage important distinctions. James Rachels’ work on active and passive euthanasia, which contends that the two are ethically identical, exemplifies that logic.[6] He illustrates this thesis, using a continuum to compare different scenarios with like consequences as morally equivalent, by comparing the deliberate drowning of a child with a deliberate failure to rescue a drowning child when easily able to do so. The author's comparison proposes that since much of the medical profession has already made peace with withholding treatment in order to hasten death, consistency inexorably demands that we permit active euthanasia as well.[7] When permission for active euthanasia was first introduced, it was limited exclusively to patients suffering severely from an intractable, incurable, and irreversible disease. These guidelines have been continuously eroded. There is now a substantial serious consideration for permitting active euthanasia of healthy elderly individuals who feel that they have completed their lives and are "tired of living."[8] There are many moral and factual differences along the ethical continuum. In human life, there is a difference between a live baby and a fetus, between a viable fetus and one that is not, between a fetus and a zygote, and between a zygote and a sperm cell. Similarly, there is a difference between pulling a trigger to kill someone and not interfering in preventing his death, which is reprehensible though both may be. There is a difference between not resuscitating an 80-year-old man with cancer when his heart stops and injecting him with a fatal dose of potassium chloride. I argue that an overt act of taking life repels civilized human beings is to be commended and encouraged as the reverence for human life or even for just a moment of human life is one of the great contributions of our civilization. CONCLUSION As an orthodox Jew, I feel that divinely inspired guidelines that have stood the test of centuries shape my beliefs, and such guidelines contradict medical aid in dying. I cannot speak to the viewpoint of those who do not access religion in defining their moral stance, nor do I implicate them in the current bioethics' trends, as I am not aware of the personal role of religion in the lives of most such authors. While many nonreligious people have a firm philosophical grounding and oppose medical aid in dying, I suggest that in the absence of any religious or other absolute standards, developing logically defensible ethical guidelines may be challenging. At the least, religion may play a role in defining the points on the continuums that are ethically meaningful and refuting the trending beliefs that if the endpoint is the same, allowing different methods of arriving at that end are somehow ethically equal. The continuum of ways death may result does not negate analysis of whether death is brought about in ways that recognize the importance of life. The German philosopher Hans Jonas said, "It is a question whether without restoring the category of the sacred, the category most thoroughly destroyed by the scientific enlightenment, we can have an ethics able to cope with the extreme powers that we possess today and constantly increase and are compelled to use."[9] While countries vary on the role of religion in policy, with many emphasizing freedoms of religion, a recent position paper released by a group of Jewish, Christian, and Moslem leaders (the three Abrahamic religions) suggested the need for agreement on the unique sanctity of human life.[10] I would recommend that such a document serve as an example of consensus on critical foundational bioethical guidelines for democratic secular societies. - [1] Alexander L (1949) Medical science under dictatorship. New England Journal of Medicine, 241, p39-47 DOI10.1056/NEJM194907142410201 [2] Lederberg J. (1967) A geneticist looks at contraception and abortion, Annals of Internal Medicine 67, sup 2, 25-27. https:/doi.org/10.7326/0003-4819-67-3-25 [3] Ibid. [4] Editorial, Sociology: Logic of biology. Nature 220, 429 (1968) https://www.nature.com/articles/220429b0 [5] Giublini A Minerva F (2013) After-birth abortion: why should the baby live. J Med Ethics 39, 261- [6] Rachels J (1975) Active and passive euthanasia. New England Journal of Medicine 292, 78-80 [7] Ibid. [8] Cohen-Almagor R Euthanizing people who are "tired of life". in Euthanasia and Assisted Suicide-Lessons from Belgium. Ch 11 of Euthanasia and Assisted Suicide, Cambridge University Press pp173-187. 2017 and DOI; https://doi.org/10.1017/9781108182799.012 [9] Hans Jonas, Technology and Responsibility: Reflections on the New Tasks of Ethics, 1972, found as Chapter IX, Philosophical Essays, 1980. https://inters.org/jonas-technology-responsability [10] A position paper of the Abrahamic Monotheistic religions on matters concerning the end-of-life. Vatican Press 28 October 2019 https://press.vatican.va/content/salastampa/en/bollettino/pubblico/2019/10/28/191028f.html

IntroductionFrom reality television and self-help literature to exhortations to be “true to yourself,” authenticity pervades contemporary culture. Despite their prevalence, cultures of self-improvement and authenticity are routinely linked to arguments about increasing narcissism and declining care for others. Self-improvement involves self-based practices geared to help realise the “improved” and “better you” while authenticity is focused on developing the unique, inner and “real” you. Critiques of both self-improvement and authenticity culture are particularly evident in a sociological tradition of “cultural pessimism” (Hookway, Moral). This group of thinkers argue that the dominance of a “therapeutic” culture where the “self improved is the ultimate concern of modern culture” has catastrophic social and moral consequences (Reiff; Bell; Lasch; Bellah; Bauman and Donskis). Drawing upon Charles Taylor, I take critical aim at such assessments, arguing that ideals and practices of authenticity can be morally productive. I then turn to an empirical investigation of how everyday Australians understand and practice morality based on a qualitative analysis of 44 Australian blogs combined with 25 follow-up online in-depth interviews. I suggest that while the data shows the prevalence and significance of “being true to yourself” as an orientating principle, the bloggers produce a version of authenticity that misses the relational and socially-shaped character of self and morality (Taylor; Vannini and Williams).Authenticity and NarcissismA key tenet of modern cultural diagnosis (Rieff, Bell; Lasch; Bellah; Bauman and Donskis) is that Westerners have become increasingly “narcissistic” as cultural authority weakens and the self becomes something to “be discovered” and “worked out” (Bauman). Rieff, a key proponent of this tradition, locates the problem specifically with the rise of therapeutic culture in the 1960s, which denied the proper prohibitive function of culture and transformed moral problems into analytic issues for the self-actualising and “authentic” self. Bell identifies growing consumerism and weakening religion as issuing a shift from a culture of restraint to a culture of release, resulting in an unparalleled permissiveness, hedonism and potential nihilism. More recently, Bauman and Donskis (13) argue that our consumerist pursuit of “authentic” or “peak” experiences tears apart the once solid social bonds of the past. For these theorists, a modern culture postulating the uniqueness and authenticity of the individual can only result in a diminishing care for others and a self-defeating culture of self-fulfilment.Lasch launches perhaps the most scathing critique of “authenticity” culture. Lasch asserts that the modern West has seen the emergence of a “culture of narcissism:” a culture pathologically preoccupied with the care and well-being of the self. He contends that meaning and morality comes to be increasingly defined through the lens of “psychic self-improvement” and “an intense preoccupation with the self” (Lasch 25). Lasch writes:Having no hope of improving their lives in any of the ways that matter, people have convinced themselves that what matters is psychic self-improvement: getting in touch with their feelings, eating health food, taking lessons in ballet or belly-dancing, immersing themselves in the wisdom of the East, jogging, learning how to relate’, overcoming the ‘fear of pleasure’ (Lasch 4).This search for self-fulfilment within the private realm of the self offers little hope of escape in Lasch’s analysis. It is a symptom of the disease rather than a treatment. Having sacrificed obedience to a higher authority for an intensive focus on the authentic and self-actualising self, the modern West is left with amoral, uncaring and “narcissistic” selves (Lasch). In the end, morality has little hope in a culture in which the individual is allowed to create their “own set of rules,” where “no” has disappeared from our moral vocabulary, and where foundational moral laws enforced by religious tradition and higher moral authorities have disappeared.Self-Improvement and Authenticity as Moral Ideals A central problem with cultural decline accounts is that they miss how the search for personal authenticity or self-discovery could be morally productive (Taylor). Practices of therapy and self-improvement do not always need to be one-dimensionally read as exemplars of narcissism (Wright). For example, it is important to recognise how contemporary therapeutic and confessional cultures, underpinned by a focus on self-authenticity, self-discovery and personal growth, can emphasise the “moral makeover” or becoming a “better” person (Elliott and Lemert 124). Talk-shows, self-help literature, reality TV and blogging are all cultural examples that underpin how the therapeutic search for authenticity does not have to read as a one-way road to shrinking moral concern.Lasch’s indices of moral decline—“the wisdom of the east” or “eating health food”—can also be read in a more positive moral light. Take yoga, meditation and vegetarianism as examples. These practices are growing rapidly in popularity in Australia (Penman; Hookway, Moral) and have a strong cultural focus on values of authenticity. While these self-practices emphasise personal growth, self-awareness and self-care, at the same time they promote ethical relations of responsibility between self, others, body, nature, animals and environment. As actor Gillian Anderson said: “the whole thing about meditation and yoga is about connecting to the higher part of yourself, and then seeing that every living thing is connected in some way” (Marati). Could these practices, therefore, not be re-interpreted as self-originating acts of ethics—as acts of personal authenticity that morally recognise the Other? (Taylor)?Taylor (1992) provides a useful approach to salvage values of authenticity from the despair of much cultural diagnosis. He (81) suggests that the ethical ideal of authenticity—wrapped in notions of self-discovery, self-fulfilment and personal improvement—now plays a central role in modern Western culture. Taylor (11) emphasises the moral possibilities of authenticity as an ethical ideal built on the principle of “being true to yourself” (Taylor 26). This is a moral mode that rests in the moral ideal of “being true to my own originality,” which is “something only I can articulate” (Taylor 29).Taylor (74) contends that “at its best” authenticity as a contemporary ideal “allows a richer model of existence.” Rather than destroying it point-blank for its weaknesses, Taylor sets as his task to raise the bar of the ideal. He suggests that authenticity in this higher form calls upon people to adopt a self-responsible form of life that engenders people to be “true to themselves” within relations of responsibility to others. The key to achieving this is a tempered version of authenticity that acknowledges its “constitutive tensions” (Taylor 71). This is a reconstructed ideal that balances the creative, original and non-conformist dimensions of authenticity—the artistic aspects—with external signifiers or points of reference outside the self.What Taylor is doing here is putting some checks and balances around authenticity as a notion of unfettered self-determining freedom. He does this by underlining the significance of the self in relation to what he calls “horizons of significance.” For Taylor, it is only through “horizons of significance”—for example, history, nature, charity, citizenship and God—that we come to know and recognise ourselves in meaningful ways (45–48; 68). Taylor highlights here the importance of a social self where the individual choosing/feeling self is absurd taken in isolation from others (36).Like the poet, the musician or the artist, moral creation is personal and intensely subjective but it is still connected to a social self. For example, vegetarianism or yoga may involve the development of an authentic relationship with the self through the cultivation of qualities of personal awareness, growth and self-care but they are also fundamentally about dialogical relations with others—with animals, with nature, with a sense of social and cosmic connectedness. As Taylor asserts, personal sensibility finds significance in the construction of a world independent of self-choice and feeling (89). The value of Taylor is that he recovers authenticity and practices of self-improvement from the straight out negativity of decline theory but does not trivialise morality to a sort of unfettered self-determining and disencumbered freedom. This theoretical discussion provides a conceptual framework in which to investigate how everyday moralities are constructed and practiced in contemporary Australia.Present Study How do Australians understand and experience morality in their everyday lives? What role does authenticity play? What are the implications of this and what it does it mean for authenticity as a contemporary ethical ideal? To help answer these questions I now report the findings of a qualitative study I conducted into everyday Australian moralities. A small qualitative sample of bloggers is in no way representative of the population but provides some illustrative examples of the shape and influence of authenticity culture on moral life. The aim of the everyday moralities project was to “thickly describe” (Geertz) how individuals “write” and “talk” their everyday moral worlds into existence from their own perspectives. The first part of the study involved a qualitative analysis of 44 Australian blogs. Blogs offered an original empirical lens through which to investigate the contemporary production of morality and selfhood in late-modernity. The blogs were selected as a form of personal life record (Thomas and Znaniecki 1833) that allowed access to spontaneous accounts of everyday life that reflected what was important to the blogger without the intervention of a researcher (Hookway, Entering). The blogs were sampled from the blog hosting Website LiveJournal (LJ). Blogs were selected that contained at least two incidents, moments, descriptions or experiences that shed light on the blogger’s everyday moral constructions and practices. The second part of the study inviting sampled bloggers to participate in an online interview to further develop themes expressed in their blog posts. This resulted in 25 online interviews, which were conducted via various instant-messaging programs.“Being True to Yourself”: Authenticity as Moral Value? Meet Queen_Extremist, a 26 year-old female university student from Melbourne and president of the university student association. While writing that her life is “all in a spin”, Queen_Extremist says she “likes who I am, I like the way I do things, I’m proud of what I’ve achieved. I stayed true to myself”. Although Queen_Extremist may position herself as someone who is “not sure what [her] beliefs are based on, or whether they are worthwhile”, she “knows who she is”. And while potentially conflicted about whether “the concept of staying true to one’s self is arrogant and selfish”, “being true to yourself” according to what “feels right” is positioned as a sort of royal road to the construction of everyday rightness. She writes:I know what I feel. I know when something feels wrong to me. I know when something feels right. And I know that it feels terrible when I do something that feels wrong. It’s not logical. It’s not rational. I don’t know if it’s the right thing to do or if it’s selfish or arrogant. But I don't like being something I’m not. I don't like being false or changing my personality for others. I’m really happy with who I am. If something contrary to that is required, I suggest that someone other than me is requested to do it.Queen_Extremist offers a clear articulation of the everyday guiding power of authenticity. This type of morality is rooted in an obligation to realise an authentic selfhood found in a feeling-based sense of right and wrong. One “looks within” to the subjective and authentic world of the feeling and true self to determine “right” and “wrong.” The source of “who I am” is found within the inner world of “true feelings”. So while Queen_Extremist may feel that she does not “know much about anything” she is confident in her knowledge of who she truly is and what she truly feels. This is an ethical knowledge that she can explicitly trust. The trick for Queen_Extremist’s practice of an “ethics of authenticity” is discovering who you are and sticking to it.Universal_cloak, Squash_pippa and Snifflethebouncer all advance a similar moral strategy that highlights the power of “being true to yourself”. 32-year-old Universal_cloak, an artistic designer from Melbourne, writes on her blog of the importance of “being true to yourself” and its helping role in “making moral choices about who I am and what I stand for”:Being true to yourself is one of the most important things you can nurture in life … I think it’s important to live your life in a way that reflects who you are. If you lead a false life you will sooner or later run into problems because you’re ignoring huge parts of yourself that require attention (interview).Universal_cloak believes that “it’s morally wrong to avoid, ignore or otherwise mistreat yourself”. Inverting “do unto others”, she writes, “if you wouldn’t do it to other people, don’t do it to yourself”. She reasons that to not be “who you are” is inherently self-destructive: “I have known people who have ignored who they are, and as a result have sort of ‘soured themselves’”. For Universal_cloak, a corollary of “souring” the self is “souring” relations to others: “in turn, they build up this sourness and it reflects in their life, making them sour toward other people”. For Universal_cloak, authenticity not only governs the relation of self upon self but also involves relations of care with others; the personal search for authenticity is connected to how one treats and relates to other people.Similarly, Snifflethebouncer, a 22-year old PhD student from Sydney, writes “one of the things that matters most to me, with morality, is that you feel genuine about what you’re doing”. Feeling emerges here as a strategy to validate a “genuine” or “authentic” morality:You feel in your heart that it’s the right thing. If you feel one thing and do something else, then you’re not being true to yourself. If I feel one thing is the right thing to do, but I do something else (to benefit myself, most probably), then I’ll feel bad about it, and I’ll feel I haven't followed my morals.Squash_pippa, a 32-year-old female community worker from Sydney, elaborates the significance of “being true to yourself” as a code of action by describing a story about someone who “invented themselves to be someone that they’re not” and how this had caused her to feel inferior, to even “hate” herself “for not being as good as what they were”. She explains, claiming to now see the “situation objectively”, that this person had actually lied about “who they were” by “making themselves out to be so good”. They had violated the ideal of being the “real” and “authentic” you. For Squash_pippa this meant they were actually a “lesser person” as they were not prepared to accept the reality of “who they really are”. This notion of being authentic to the self (Taylor) is something Squash_pippa says she has always committed to. She is “who I am” and “never compromises what ‘feels’ right”:I am who I am and people can either like me or hate me, either way I’m not too fussy just as long as I never have to go against the morals and values I have and never compromise what ‘feels’ right … We all have our faults and they're not always easy to accept but it takes a stronger person to accept who they really are than the one who lies and makes themselves to be someone who they’re not.Queen_Extremist, Universal_cloak, Squash_pippa and Snifflethebouncer evoke a type of “ethics of authenticity”, where the notion of “being true to yourself” is sourced from the “romantic solace” of moral feeling. In these accounts, there is only one true or authentic self—the rest are imposters that lead to falseness and the problems of inauthenticity, fakery and phoniness—the contemporary sins of an “age of authenticity”.Being true to self is developed in these accounts as a life-principle that suggests we all have a unique and original way of being moral within us that needs to be realised and fulfilled. For these bloggers, the primary moral task is to search and reveal the “authentic” self, the real and truthful self that lurks within. While “being true to yourself” operates as a powerful framework of belief in these blog accounts, it does not meet Taylor’s criteria of authenticity in its “higher form.” Authenticity is mobilised in its more “narcissistic” form, where moral talk is never linked to something external to the self. For example, Queen_Extremist knows who she is and does not want to be something she is not. Likewise, Universal_Cloak believes in living life “in a way that reflects who you are”. These are highly subjectivist accounts of morality which not only ignore the social basis of morality but also present morality as unilateral and deaf rather than something that is responsive to people’s suffering or flourishing (Sayer). Authenticity—using Taylor’s language—is presented in an impoverished form where ideals of action never reside outside the self and thus fail to invoke a better or higher form of life worth searching and striving for (Taylor 61). In many ways, we end up with evidence that support declinist accounts of authenticity discourses as self-centred, introverted and amoral.ConclusionIn this paper I have examined the importance of authenticity as a contemporary cultural and moral value. In the first part, I showed how authenticity and cultures of self-fulfilment have been negatively theorised by the “cultural pessimists.” Using the work of Taylor, I went on to argue that authenticity, particularly the ethical principle of “being true to yourself” can be retrieved from the pessimism of thinkers like Rieff, Lasch, Bell, Bauman and Donskis. I argue that Taylor is particularly important in how he recognises the value of authenticity in terms of it’s creative and artistic dimensions but also the external “horizons of significance” that give it substance, life and meaning. The second part of the paper moved to an empirical analysis of how authenticity was mobilized by a selection of Australian bloggers. For these individuals, to be authentic means not “being something I’m not” (Queen_Extremist); “not leading a false life” (Universal_cloak); and not “inventing” yourself “as someone else”. Like reality television contestants, their task is to sort the real from the fake, from those “playing the game” and those being themselves—to work out who’s being “real” and who’s not. Why authenticity is clearly a powerful guide for this group of bloggers, their accounts do seem to partly support the pessimists’ charge of narcissism. Ideas of authenticity are presented as coming purely from inside the self without reference to external “horizons of significance.” This leaves us with an anemic form of authenticity that ignores the social basis of self, authenticity and morality (Taylor).“Being true to yourself” is a moral strategy that invokes a modernist assumption of a stable and unitary model of self. It is a version of self that appears distinctly “non-liquid” (Bauman). There are, for example, no “multiple” or “fragmented” selves in the blog accounts of Queen_Extremist, Universal_cloak and Snifflethebouncer but only “true” and “false” “personalities”; “real”, “false” or “invented selves”. As Universal_cloak says, being “true to yourself” means “to live your life in a way that reflects who you are” (Universal_cloak). In this way the bloggers appear to not only miss the socially-shaped character of the moral self but also the aboutness of morality—how morality is about people’s well-being, suffering and flourishing rather than simply the authority of the subject (Sayer).Two key research agendas emerge from these findings. First, further research is needed to empirically investigate wider practices of authenticity and morality beyond internet populations and to examine the extent and shape of narcissism. Second, there are fruitful lines of inquiry in investigating the dynamics of “being true to yourself” in a “liquid” age supposedly defined by identity reinvention and instant transformation (Elliott and Lemert). Does the pursuit of an authentic ethical self represent a form of resistance to identity fluidity and reinvention or could it actually feed the short-termism of a “no strings attached” world, where the search for “true” or “authentic” selves promote a culture of “moving on” and weak social bonds (Bauman and Donskis 14)?ReferencesBauman, Zygmunt, and Donskis, Leonidas. Moral Blindness: The Loss of Sensitivity in Liquid Modernity. Cambridge: Polity, 2013. Bauman, Zygmunt. Liquid Modernity. Cambridge: Polity, 2000.Bell, Daniel. The Cultural Contradictions of Capitalism. New York: Basic Books, 1976.Bellah, Robert, Richard Madsen, William M. Sullivan, Ann Swidler, and Steve Tipton. Habits of the Heart: Individualism and Commitment in American Life. Berkeley: U of California P, 1996.Elliott, Anthony and Charles Lemert. The New Individualism: The Emotional Costs of Globalization. New York: Routledge, 2006.Geertz, Clifford. The Interpretation of Cultures. New York: Basic Books, 1973.Hookway, Nicholas. “Entering the Blogosphere: Some Strategies for Using Blogs in Social Research.” Qualitative Research 8.1 (2008): 91–113.Hookway, Nicholas. “Moral Decline Sociology: Critiquing the Legacy of Durkheim.” Journal of Sociology 20 Jan. 2014. DOI: 10.1177/1440783313514644.Lasch, Christopher. The Culture of Narcissism: American Life in an Age of Diminishing Expectations. New York: W.W. Norton, 1979. Marati, Jessica. 50 Quotes about Meditation and Yoga. 2012. 15 Jan. 2015 ‹http://ecosalon.com/50-quotes-on-meditation-amp-yoga/›.Penman, Stephen. Yoga in Australia: Sign of the Times. 2010. 15 Jan. 2015 ‹http://www.yogasurvey.com/SignoftheTimes.pdf›.Rieff, Phillip. The Triumph of the Therapeutic: Uses of Faith after Freud. New York: Harper and Row, [1966] 1987.Sayer, Andrew. Why Things Matter to People. New York: Cambridge UP, 2011.Taylor, Charles. The Ethics of Authenticity. Cambridge: Harvard UP, 1992.Thomas, William I. and Florian Znaniecki. The Polish Peasant in Europe and America. New York: Dover,[1918] 1958.Vannini, Phillip and J. Patrick Williams. Authenticity in Culture, Self and Society. Surrey: Ashgate, 2009. Wright, Katie. “Theorizing Therapeutic Culture: Past Influences, Future Directions.” Journal of Sociology 44.1 (2008): 321–336.

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.

BackgroundIn the past twenty years the discourse of the weight-centred health paradigm (WCHP) has attained almost complete dominance in the sphere of public health policy throughout the developed English speaking world. The national governments of Australia and many countries around the world have responded to what is perceived as an ‘epidemic of obesity’ with public health policies and programs explicitly focused on reducing and preventing obesity through so called ‘lifestyle’ behaviour change. Weight-related public health initiatives have been subjected to extensive critique based on ideological, ethical and empirical grounds (Solovay; Oliver; Gaesser; Gard; Monaghan, Colls and Evans; Wright; Rothblum and Solovay; Saguy; Rich, Monaghan and Aphramor; Bacon and Aphramor; Brown). Many scholars have raised concerns about the stigmatising and harmful effects of the WCHP (Aphramor; Bacon and Aphramor; O'Dea; Tylka et al.), and in particular the inequitable distribution of such negative impacts on women, people who are poor, and people of colour (Campos). Weight-based stigma is now well recognised as a pervasive and insidious form of stigma (Puhl and Heuer). Weight-based discrimination (a direct result of stigma) in the USA has a similar prevalence rate to race-based discrimination, and discrimination for fatter and younger people in particular is even higher (Puhl, Andreyeva and Brownell). Numerous scholars have highlighted the stigmatising discourse evident in obesity prevention programs and policies (O'Reilly and Sixsmith; Pederson et al.; Nuffield Council on Bioethics; ten Have et al.; MacLean et al.; Carter, Klinner, et al.; Fry; O'Dea; Rich, Monaghan and Aphramor). The ‘war on obesity’ can therefore be regarded as a social determinant of poor health (O'Hara and Gregg). Focusing on overweight and obese people is not only damaging to people’s health, but is ineffective in addressing the broader social and economic issues that create health and wellbeing (Cohen, Perales and Steadman; MacLean et al.; Walls et al.). Analyses of the discourses used in weight-related public health initiatives have highlighted oppressive, stigmatizing and discriminatory discourses that position body weight as pathological (O'Reilly; Pederson et al.), anti-social and a threat to the viable future of society (White). There has been limited analysis of discourses in Australian social marketing campaigns focused on body weight (Lupton; Carter, Rychetnik, et al.).Social Marketing CampaignsIn 2006 the Australian, State and Territory Governments funded the Measure Up social marketing campaign (Australian Government Department of Health and Ageing "Measure Up"). As the name suggests Measure Up focuses on the measurement of health through body weight and waist circumference. Campaign resources include brochures, posters, a tape measure, a 12 week planner, a community guide and a television advertisement. Campaign slogans are ‘The more you gain, the more you have to lose’ and ‘How do you measure up?’Tomorrow People is the component of Measure Up designed for Indigenous Australians (Australian Government Department of Health and Ageing "Tomorrow People"). Tomorrow People resources focus on healthy eating and physical activity and include a microsite on the Measure Up website, booklet, posters, print and radio advertisements. The campaign slogan is ‘Tomorrow People starts today. Do it for our kids. Do it for our culture.’ In 2011, phase two of the Measure Up campaign was launched (Australian Government Department of Health and Ageing "Swap It, Don't Stop It"). The central premise of Swap It, Don’t Stop It is that you ‘can lose your belly without losing all the things you love’ by making ‘simple’ swaps of behaviours related to eating and physical activity. The campaign’s central character Eric is made from a balloon, as are all of the other characters and visual items used in the campaign. Eric claims thatover the years my belly has ballooned and ballooned. It’s come time to do something about it — the last thing I want is to end up with some cancers, type 2 diabetes and heart disease. That’s why I’ve become a Swapper! What’s a swapper? It’s simple really. It just means swapping some of the things I’m doing now for healthier choices. That way I can lose my belly, without losing all the things I love. It’s easy! The campaign has produced around 30 branded resource items including brochures, posters, cards, fact sheets, recipes, and print, radio, television and online advertisements. All resources include references to Eric and most also include the image of the tape measure used in the Measure Up campaign. The Swap It, Don’t Stop It campaign also includes resources specifically directed at Indigenous Australians including two posters from the generic campaign with a dot painting motif added to the background. MethodologyThe epistemological position in this project was constructivist (Crotty) and the theoretical perspective was critical theory (Crotty). Multimedia critical discourse analysis (Machin and Mayr) was the methodology used to examine the social marketing campaigns and identify the discourses within them. Critical discourse analysis (CDA) focuses on critiquing text for evidence of power and ideology. CDA is used to reveal the ideas, absences and assumptions, and therefore the power interests buried within texts, in order to bring about social change. As a method, CDA has a structured three dimensional approach involving textual practice analysis (for lexicon) at the core, within the context of discursive practice analysis (for rhetorical and lexical strategies particularly with respect to claims-making), which falls within the context of social practice analysis (Jacobs). Social practice analysis explores the role played by power and ideology in supporting or disturbing the discourse (Jacobs; Machin and Mayr). Multimodal CDA (MCDA) uses a broad definition of text to include words, pictures, symbols, ideas, themes or any message that can be communicated (Machin and Mayr). Analysis of the social marketing campaigns involved examining the vocabulary, grammar, sentence structure, visuals and overall structure of the text for textual, discursive and social practices.Results and DiscussionIndividual ResponsibilityThe discourse of individual responsibility is strongly evident in the campaigns. In this discourse, it is ultimately the individual who is held responsible for their body weight and their health. The individual responsibility discourse is signified by the discursive practice of using epistemic (related to the truth or certainty) and deontic (compelling or instructing) modality words, particularly modal verbs and modal adverbs. High modality epistemic words are used to convince the reader of the certainty of statements and to portray the statement-maker as authoritative. High modality deontic words are used to instil power and authority in the instructions.The extensive use of high modality epistemic and deontic words is demonstrated in the following paragraph assembled from various campaign materials: Ultimately (epistemic modality adverb) individuals must take responsibility (deontic modality verb) for their own health, including their and weight. Obesity is caused (epistemic modality verb) by an imbalance in energy intake (from diet) (epistemic modality verb) and expenditure (from activity) (epistemic modality verb). Individually (epistemic modality adverb) we make decisions (epistemic modality verb) about how much we eat (epistemic modality verb) and how much activity we undertake (epistemic modality verb). Each of us can control (epistemic modality) our own weight by controlling (deontic modality) what we eat (deontic modality verb) and how much we exercise (deontic modality verb). To correct (deontic modality verb) the energy imbalance, individuals need to develop (deontic modality verb) a healthy lifestyle by making changes (deontic modality verb) to correct (deontic modality verb) their dietary habits and increase (deontic modality verb) their activity levels. The verbs must, control, correct, develop, change, increase, eat and exercise are deontic modality verbs designed to instruct or compel the reader.These discursive practices result in the clear message that individuals can and must control, correct and change their eating and physical activity, and thereby control their weight and health. The implication of the individualist discourse is that individuals, irrespective of their genes, life-course, social position or environment, are charged with the responsibility of being more self-surveying, self-policing, self-disciplined and self-controlled, and therefore healthier. This is consistent with the individualist orientation of neoliberal ideology, and has been identified in various critiques of obesity prevention public health programs that centralise the self-responsible subject (Murray; Rich, Monaghan and Aphramor) and the concept of ‘healthism’, the moral obligation to pursue health through healthy behaviours or healthy lifestyles (Aphramor and Gingras; Mansfield and Rich). The hegemonic Western-centric individualist discourse has also been critiqued for its role in subordinating or silencing other models of health and wellbeing including Aboriginal or indigenous models, that do not place the individual in the centre (McPhail-Bell, Fredericks and Brough).Obesity Causes DiseaseEpistemic modality verbs are used as a discursive practice to portray the certainty or probability of the relationship between obesity and chronic disease. The strength of the epistemic modality verbs is generally moderate, with terms such as ‘linked’, ‘associated’, ‘connected’, ‘related’ and ‘contributes to’ most commonly used to describe the relationship. The use of such verbs may suggest recognition of uncertainty or at least lack of causality in the relationship. However this lowered modality is counterbalanced by the use of verbs with higher epistemic modality such as ‘causes’, ‘leads to’, and ‘is responsible for’. For example:The other type is intra-abdominal fat. This is the fat that coats our organs and causes the most concern. Even though we don’t yet fully understand what links intra-abdominal fat with chronic disease, we do know that even a small deposit of this fat increases the risk of serious health problems’. (Swap It, Don’t Stop It Website; italics added)Thus the prevailing impression is that there is an objective, definitive, causal relationship between obesity and a range of chronic diseases. The obesity-chronic disease discourse is reified through the discursive practice of claims-making, whereby statements related to the problem of obesity and its relationship with chronic disease are attributed to authoritative experts or expert organisations. The textual practice of presupposition is evident with the implied causal relationship between obesity and chronic disease being taken for granted and uncontested. Through the textual practice of lexical absence, there is a complete lack of alternative views about body weight and health. Likewise there is an absence of acknowledgement of the potential harms arising from focusing on body weight, such as increased body dissatisfaction, disordered eating, and, paradoxically, weight gain.Shame and BlameBoth Measure Up and Swap It, Don’t Stop It include a combination of written/verbal text and visual images that create a sense of shame and blame. In Measure Up, the central character starts out as young, slim man, and as he ages his waist circumference grows. When he learns that his expanding waistline is associated with an increased risk of chronic disease, his facial expression and body language convey that he is sad, dejected and fearful. In the still images, this character and a female character are positioned looking down at the tape measure as they measure their ‘too large’ waists. This position and the looks on their faces suggest hanging their heads in shame. The male characters in both campaigns specifically express shame about “letting themselves go” by unthinkingly practicing ‘unhealthy’ behaviours. The characters’ clothing also contribute to a sense of shame. Both male and female characters in Measure Up appear in their underwear, which suggests that they are being publicly shamed. The clothing of the Measure Up characters is similar to that worn by contestants in the television program The Biggest Loser, which explicitly uses shame to ‘motivate’ contestants to lose weight. Part of the public shaming of contestants involves their appearance in revealing exercise clothing for weigh-ins, which displays their fatness for all to see (Thomas, Hyde and Komesaroff). The stigmatising effects of this and other aspects of the Biggest Loser television program are well documented (Berry et al.; Domoff et al.; Sender and Sullivan; Thomas, Hyde and Komesaroff; Yoo). The appearance of the Measure Up characters in their underwear combined with their head position and facial expressions conveys a strong, consistent message that the characters both feel shame and are deserving of shame due to their self-inflicted ‘unhealthy’ behaviours. The focus on ‘healthy’ and ‘unhealthy’ behaviours contributes to accepted and contested health identities (Fry). The ‘accepted health identity’ is represented as responsible and aspiring to and pursuing good health. The ‘contested health identity’ is represented as unhealthy, consuming too much food, and taking health risks, and this identity is stigmatised by public health programs (Fry). The ‘contested health identity’ represents the application to public health of Goffman’s ‘spoiled identity’ on which much stigmatisation theorising and research has been based (Goffman). As a result of both lexical and visual textual practices, the social marketing campaigns contribute to the construction of the ‘accepted health identity’ through discourses of individual responsibility, choice and healthy lifestyle. Furthermore, they contribute to the construction of the spoiled or ‘contested health identity’ through discourses that people are naturally unhealthy and need to be frightened, guilted and shamed into stopping ‘unhealthy’ behaviours and adopting ‘healthy’ behaviours. The ‘contested health identity’ constructed through these discourses is in turn stigmatised by such discourses. Thus the campaigns not only risk perpetuating stigmatisation through the reinforcement of the health identities, but possibly extend it further by legitimising the stigma associated with such identities. Given that these campaigns are conducted by the Australian Government, the already deeply stigmatising social belief system receives a significant boost in legitimacy by being positioned as a public health belief system perpetrated by the Government. Fear and AlarmIn the Measure Up television advertisement the main male character’s daughter, who has run into the frame, abruptly stops and looks fearful when she hears about his increased risk of disease. Using the discursive practice of claims-making, the authoritative external source informs the man that the more he gains (in terms of his waist circumference), the more he has to lose. The clear implication is that he needs to be fearful of losing his health, his family and even his life if he doesn’t reduce his waist circumference. The visual metaphor of a balloon is used as the central semiotic trope in Swap It, Don’t Stop It. The characters and other items featuring in the visuals are all made from twisting balloons. Balloons themselves may not create fear or alarm, unless one is unfortunate to be afflicted with globophobia (Freed), but the visual metaphor of the balloon in the social marketing campaign had a range of alarmist meanings. At the population level, rates and/or costs of obesity have been described in news items as ‘ballooning’ (Body Ecology; Stipp; AFP; Thien and Begawan) with accompanying visual images of extremely well-rounded bodies or ‘headless fatties’ (Cooper). Rapid or significant weight gain is referred to in everyday language as ‘ballooning weight’. The use of the balloon metaphor as a visual device in Swap It, Don’t Stop It serves to reinforce and extend these alarmist messages. Further, there is no attempt in the campaigns to reduce alarm by including positive or neutral photographs or images of fat people. This visual semiotic absence – a form of cultural imperialism (Young) – contributes to the invisibilisation of ‘real life’ fat people who are not ashamed of themselves. Habermas suggests that society evolves and operationalises through rational communication which includes the capacity to question the validity of claims made within communicative action (Habermas The Structural Transformation of the Public Sphere; Habermas The Theory of Communicative Action: Reason and the Rationalisation of Society). However the communicative action taken by the social marketing campaigns analysed in this study presents claims as uncontested facts and is therefore directorial about the expectations of individuals to take more responsibility for themselves, adopt certain behaviours and reduce or prevent obesity. Habermas argues that the lack or distortion of rational communication erodes relationships at the individual and societal levels (Habermas The Theory of Communicative Action: Reason and the Rationalisation of Society; Habermas The Structural Transformation of the Public Sphere). The communicative actions represented by the social marketing campaigns represents a distortion of rational communication and therefore erodes the wellbeing of individuals (for example through internalised stigma, shame, guilt, body dissatisfaction, weight preoccupation, disordered eating and avoidance of health care), relationships between individuals (for example through increased blame, coercion, stigma, bias, prejudice and discrimination) and society (for example through stigmatisation of groups in the population on the basis of their body size and increased social and health inequity). Habermas proposes that power differentials work to distort rational communication, and that it is these distortions in communication that need to be the focal point for change (Habermas The Theory of Communicative Action: Reason and the Rationalisation of Society; Habermas The Theory of Communicative Action: The Critique of Functionalist Reason; Habermas The Structural Transformation of the Public Sphere). Through critical analysis of the discourses used in the social marketing campaigns, we identified that they rely on the power, authority and status of experts to present uncontested representations of body weight and ‘appropriate’ health responses to it. In identifying the discourses present in the social marketing campaigns, we hope to focus attention on and thereby disrupt the distortions in the practical knowledge of the weight-centred health paradigm in order to contribute to systemic reorientation and change.ConclusionThrough the use of textual, discursive and social practices, the social marketing campaigns analysed in this study perpetuate the following concepts: everyone should be alarmed about growing waistlines and ‘ballooning’ rates of ‘obesity’; individuals are to blame for excess body weight, due to ignorance and the practice of ‘unhealthy behaviours’; individuals have a moral, parental, familial and cultural responsibility to monitor their weight and adopt ‘healthy’ eating and physical activity behaviours; such behaviour changes are easy to make and will result in weight loss, which will reduce risk of disease. These paternalistic campaigns evoke feelings of personal and parental guilt and shame, resulting in coercion to ‘take action’. They simultaneously stigmatise fat people yet serve to invisibilise them. Public health agencies must consider the harmful consequences of social marketing campaigns focused on body weight.ReferencesAFP. "A Ballooning Health Issue around the World." Gulfnews.com 29 May 2013. 17 Sep. 2013 ‹http://gulfnews.com/news/world/other-world/a-ballooning-health-issue-around-the-world-1.1189899›.Aphramor, Lucy. "The Impact of a Weight-Centred Treatment Approach on Women's Health and Health-Seeking Behaviours." Journal of Critical Dietetics 1.2 (2012): 3-12.Aphramor, Lucy, and Jacqui Gingras. "That Remains to Be Said: Disappeared Feminist Discourses on Fat in Dietetic Theory and Practice." The Fat Studies Reader, eds. Esther Rothblum and Sondra Solovay. New York: New York University Press, 2009. 97-105. Australian Government Department of Health and Ageing. 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