The principles that usually direct ethical decision making are not easily or straightforwardly applicable to the care and treatment of anorexia nervosa, particularly the care and treatment of severe and enduring anorexia nervosa, where the sufferer seems to be recalcitrant to treatment and where the condition has become life-threatening.There are exceptional circumstances that characterize this puzzling and still scarcely understood condition; I suggest that these exceptional circumstances provide moral reasons for partial derogation from the usual principles of ethical decision making.In (...) what follows I argue... (shrink)

This article considers the claim that gender diverse minors and their families should not be able to consent to hormonal treatment for gender dysphoria. The claim refers particularly to hormonal treatment with so-called ‘blockers’, analogues that suspend temporarily pubertal development. We discuss particularly four reasons why consent may be deemed invalid in these cases: the decision is too complex; the decision-makers are too emotionally involved; the decision-makers are on a ‘conveyor belt’; the possibility of detransitioning. We examine each of these (...) reasons and we show that none of these stand up to scrutiny, and that some are based on a misunderstanding of the nature and purposes of this stage of treatment and of the circumstances in which it is usually prescribed. Moreover, accepting these claims at face value could have serious negative implications, not just for gender diverse youth, but for many other minors and families and in a much broader range of healthcare settings. (shrink)

Simona Giordano presents the first full philosophical study of ethical issues in the treatment of anorexia and bulimia nervosa. Beginning with a comprehensive analysis of these conditions and an exploration of their complex causes, she then proceeds to address legal and ethical dilemmas such as a patient's refusal of life-saving treatment. Illustrated with many case-studies, Understanding Eating Disorders is an essential tool for anyone working with sufferers of these much misunderstood conditions, and for all those ethicists, lawyers, and medical practitioners (...) engaged with the widely relevant issues they raise. (shrink)

Transgender children who are not treated for their condition are at high risk of violence and suicide. As a matter of survival, many are willing to take whatever help is available, even if this is offered by illegal sources, and this often traps them into the juvenile criminal system and exposes them to various threats. Endocrinology offers a revolutionary instrument to help children /adolescents with gender identity disorder: suspension of puberty. Suspension of puberty raises many ethical issues, and experts dissent (...) as to when treatment should be commenced and how children should be followed up. This paper argues that suspension of puberty is not only not unethical: if it is likely to improve the child’s quality of life and even save his or her life, then it is indeed unethical to defer treatment. (shrink)

A large part of the debate around the right to refuse life-prolonging treatment of anorexia nervosa sufferers centers on the issue of competence. Whether or not the anorexic should be allowed to refuse life-saving treatment does not depend solely or primarily on competence. It also depends on whether the anorexic’s suffering is bearable or tractable, and on the degree of involvement of the family in the therapeutic process. Anorexics could be competent to refuse lifesaving treatment (Giordano 2008). However, the anorexic’s (...) refusal of life-saving treatment should not be respected purely because it is a competent decision. In fact, anorexia has two characteristics that weaken the strength of the principle .. (shrink)

Anorexia nervosa is currently classed as a mental disorder. It is considered as a puzzling condition, scarcely understood and recalcitrant to treatment. This paper reviews the main hypotheses relating to the aetiology of anorexia nervosa. In particular, it focuses on family and sociological studies of anorexia. By reflecting on the hypotheses provided within these domains, and on the questions that these studies leave unanswered, this paper suggests that anorexic behaviour is understandable and rational, if seen in light of ordinary moral (...) values. (shrink)

Simona Giordano presents the first full philosophical study of ethical issues in the treatment of anorexia and bulimia nervosa. Beginning with a comprehensive analysis of these conditions and an exploration of their complex causes, she then proceeds to address legal and ethical dilemmas such as a patient's refusal of life-saving treatment. Illustrated with many case-studies, Understanding Eating Disorders is an essential tool for anyone working with sufferers of these much misunderstood conditions, and for all those ethicists, lawyers, and medical practitioners (...) engaged with the widely relevant issues they raise. (shrink)

A demographic revolution is taking place in Europe and worldwide. According to World Health Organization estimates, the number of people aged 60 and over is growing faster than any other age group. This change in the population structure affects disease patterns and is deemed to cause an increase in the demands on healthcare systems. This raises concerns about the ethics of healthcare delivery . What criteria should direct healthcare distribution? Is it right to meet the demands of an ageing population, (...) to the detriment of the younger strata of population? a. (shrink)

The importance of humanities in the medical curriculum is increasingly recognized. For example, in the United Kingdom, The General Medical Council, which is an independent body established under the Medical Act 1858 and responsible, among other things, for fostering good medical practice and promoting high standards of medical education, in its publication Tomorrow’s Doctors, encouraged inclusion of humanities in the medical curriculum. Literature, arts, poetry, and philosophy are thought to foster the doctors’ ability to “communicate with patients, to penetrate more (...) deeply into the patient’s wider narrative, and to seek more diverse ways of promoting well being and reducing the impact of illness or disability.”. (shrink)

Feminist science studies scholars have documented the historical and cultural contingency of scientific knowledge production. It follows that political and social activism has impacted the practice of science today; however, little has been done to examine the current cultures of science in light of feminist critiques and activism. In this article, I argue that, although critiques have changed the cultures of science both directly and indirectly, fundamental epistemological questions have largely been ignored and neutralized through these policy reforms. I provide (...) an auto-ethnography of my doctoral work in a neuroscience program to a) demonstrate how the culture of science has incorporated critiques into its practices and b) identify how we might use these changes in scientific practices to advance feminist science agendas. I critically analyze three areas in current scientific practice in which I see obstacles and opportunities: 1) research ethics, 2) diversity of research subjects and scientists, and 3) identification of a project's significance for funding. I argue that an understanding of the complicated and changing cultures of science is necessary for future feminist interventions into the sciences that directly challenge science's claim to epistemic authority. (shrink)

Both clinical literature and biographical accounts suggest that many transgender individuals experience shame or have experienced shame at some point in their life for reasons related to their gender identity. In clinical psychology, at least until the 1960s, shame has not received much attention; focus was on guilt and shame was regarded mainly as a ‘by-product’ of guilt. From the 1960s shame has been identified as an emotion not necessarily related to guilt and with unique features, and has been studied (...) in connection with a number of situations, such as domestic abuse, trauma, illness, and sexual orientation. However shame has been studied less in connection with gender variance. Shame has however intrigued philosophers, writers and artists for a very long time. Yet, the importance of the contribution of various disciplines to the understanding of the experience of shame in vulnerable individuals has been overlooked. This paper attempts to explore the meaning of shame for transgender individuals, by making reference not only to clinical studies, but also to artworks and literary novels. Franz Kafka, named “the poet of shame” is particularly salient to the analysis of shame, and some of his works will enable us to shed light on the complexities of the experience of shame in transgender individuals which may defy clinical observation. (shrink)

The spread of anorexia nervosa, especially in Western developed countries, is reaching alarming proportions. According to the International Classification of Diseases, the central feature of anorexia nervosa is “deliberate weight loss”. This means that anorexia nervosa is a progressive pursuit of lightness. Moving from this observation, I ask why so many people want to lose weight, why some would die, rather than put on weight. In order to understand what value these people attach to lightness, I look at contexts where (...) lightness is typically celebrated (music, literature, and arts) and provide an analysis of anorexia nervosa, using both theoretical reflection and empirical observations. This analysis shows that anorexia is much more than a pattern of psychiatric symptoms, and much more than unintelligible behaviour. Anorexic behaviour is instead meaningful and coherent behaviour, and expresses ethical values that are deeply rooted in Western culture. (shrink)

Gender Identity Disorder is classified as a mental illness and included in the DSM-IV and ICD-10. It will also be included in the DSM-V. The psychiatric diagnosis, in spite of some apparent advantages, has significant psychological and social adverse implications. This paper discusses some of the main epistemological reasons to consider gender variance as a mental disorder. It will also evaluate whether reasons of other kinds may justify the inclusion of gender variance amongst mental illnesses.

The ethics of post-mortem organ retention and use is widely debated in bioethics and law. However, the fundamental ethical issues have often been inadequately treated. According to one argument, dead bodies are no longer “persons”. Given the great benefits dead bodies offer to human kind, they should be automatically treated as public property: when the person dies, the body becomes a public thing . This paper articulates the ethical issues involved in organ and tissue retention and use, both in the (...) case in which the deceased’s wishes are known and in the case in which the wishes are not known. It contends that a dead body is not a republic. The state should maximise availability of organs and tissues by inviting or requiring citizens to make an informed and responsible choice on the matter. (shrink)

Gender Identity Disorder (GID) is regarded as a mental illness and included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). It will also appear in the DSM-V, due to be published in 2013. The classification of GID as a mental illness is contentious. But what would happen to sufferers if it were removed from the diagnostic manuals? Would people lose their entitlement to funded medical care, or to reimbursement under insurance schemes? On what basis should medical treatment for (...) GID be provided? What are the moral arguments for and against funded or reimbursed medical care for GID? This paper starts out with a fiction: GID is removed from the diagnostic manuals. Then the paper splits in two, as in happened in the Howitt’s 1998 film Sliding Doors . The two scenarios run parallel. In one, it is argued that GID is on a par with other body modifications, such as cosmetic and racial surgery, and that, for ethical reasons, treatment for GID should be privately negotiated by applicants and professionals and privately paid for. In the other scenario, it is argued that the comparison between GID and other body modifications is misleading. Whether or not medical treatment should be funded or reimbursed is independent of whether GID is on a par with other forms of body dissatisfaction. (shrink)

A demographic revolution is taking place in Europe and worldwide. According to World Health Organization estimates, the number of people aged 60 and over is growing faster than any other age group. This change in the population structure affects disease patterns and is deemed to cause an increase in the demands on healthcare systems. This raises concerns about the ethics of healthcare delivery. What criteria should direct healthcare distribution? Is it right to meet the demands of an ageing population, to (...) the detriment of the younger strata of population? a. (shrink)

This paper reflects on some amendments to the Declaration of Helsinki in 2008. It focuses on former paragraphs 5 (now 6) and 19 (now 17). Paragraph 5 suggested that the wellbeing of research participants should take precedence over the interests of science and society. Paragraph 6 now proposes that it should take precedence over all other interests. Paragraph 19, and the new paragraph 17, suggest that research involving the members of a disadvantaged population is only justified if the clinical trial (...) is likely to benefit them. In both cases, the recommendation is that the interests of the research subjects should prevail over the interests of third parties. This paper assesses the plausibility of these statements, and in order to do so, considers debates on the moral duty to participate in biomedical research. It is argued that, even if seen in the context of the Declaration as a whole, the statements contained in these paragraphs risk offering a misleading portrait of science and risk eroding some of the ethical principles that should form the basis of a satisfactory shared life, such as altruism and responsibility for our fellows. (shrink)

The book offers an accessible account of EDs and closely examines the concept of addiction, Drawing on a wide range of medical, psychological, physiological, sociological and philosophical sources, the book examines the benefits and risks of exercise for the ED population, explores the links between EDs and other abuses of the body in the sports environment and addresses the issue of athletes with disordered eating behaviour. Importantly, the book also surveys current legislation and professional codes of conduct that guide the (...) work of fitness professionals and clinicians in this area and I presents a clear and thorough set of case histories and action points to help professionals better understand, and care for, their clients with EDs. --. (shrink)

Studies suggest that the majority of gender diverse children revert to the gender congruent with the sex assigned at birth when they reach puberty. These children are now known in the literature as ‘desisters’. Those who continue in the path of gender transition are known as ‘persisters’. Based on the high desistence rates, some advise being cautious in allowing young children to present in their affirmed gender. The worry is that social transition may make it difficult for children to de-transition (...) and thus increase the odds of later unnecessary medical transition. If this is true, allowing social transition may result in an outright violation of one of the most fundamental moral imperatives that doctors have: first do no harm. This paper suggests that this is not the case. Studies on desistence should inform clinical decisions but not in the way summarised here. There is no evidence that social transition per se leads to unnecessary medical transition; so should a child persist, those who have enabled social transition should not be held responsible for unnecessary bodily harm. Social transition should be viewed as a tool to find out what is the right trajectory for the particular child. Desistence is one possible outcome. A clinician or parent who has supported social transition for a child who later desists will have not violated, but acted in respect of the moral principle of non-maleficence, if the choice made appeared likely to minimise the child’s overall suffering and to maximise overall the child’s welfare at the time it was made. (shrink)

A short story of an assassin and a sleeping old Fisherman: Before I explain the rationale of this anecdote, let me begin my response by saying how grateful I am to Bratton and Tomasini for engaging with me over such a thorny and unpleasant topic. Many of us have either suffered eating disorders, or have a relative or a friend who has had an eating disorder, or who has died with anorexia. I still remember giving a talk on anorexia nervosa, (...) several years ago, and at the end of the talk one senior academic was very shaken and nearly in tears. He had lost his sister with anorexia. For many of us, eating disorders are an extremely sensitive issue, and for this very reason, I feel particularly indebted when .. (shrink)

In this issue of the Hastings Center Report, Tony Hope, Jacinta Tan, Anne Stewart, and Ray Fitzpatrick, reporting on twenty-nine interviews they conducted with women with so-called anorexia nervosa, note that the participants recurrently raised issues of authenticity. The paper reflects on the way their behaviors, experiences, and choices can be considered authentic , or inauthentic . The authors also pose a question about the normative implications of their analysis—if some choices are inauthentic, then is it ethical to override them? (...) For example, they suggest that “showing respect” for the sufferer “does not necessarily mean simply acceding to the person’s .. (shrink)

In this paper, we present the case of a couple who refused to disclose the sex of their child to others, and some of the responses that this case prompted in the international media. We outline the ethical issues that this case raises, and we place it into the more general context of parental preferences regarding the gender (development) of their children and of the impact on children of parental choices in the matter. Based on current knowledge of gender identity (...) development, we identify some of the potential pitfalls of such a course of action and we briefly present some alternative strategies that could be implemented in order to ensure more freedom of gender formation in children. (shrink)

In this paper, I describe a collaborative project involving two feminist trained scientists1 in consultation with a bioethicist, a policy analyst, and a research scientist funded by the National Academies Keck Futures Initiative for the design and implementation of a training program for ethics in synthetic biology. In spring 2011, the project culminated in our coteaching an experimental graduate seminar on ethics and synthetic biology.Synthetic biology most commonly refers to an interdisciplinary field that aims to merge engineering and biology methods (...) to create new technologies. The promise is that these new technologies will solve the world’s most pressing problems: for example, they may provide us with cures.. (shrink)

Eating Disorders, particularly anorexia and bulimia, are of immense contemporary importance and interest. News stories depicting the tragic effects of eating disorders command wide attention. Almost everybody in society has been touched by eating disorders in one way or another, and contemporary obsession with body image and diet fuels fascination with this problem. It is unclear why people develop eating disorders. Clinical and sociological studies have provided important information relating to the relational systems in which eating disorders are mainly found. (...) This paper shows that their explanations are not conclusive and points out that the reasons why people develop eating disorders should not be found in the dysfunctional interactions occurring in both familial and social systems, but in the moral beliefs that underlie these interactions. Eating disorders are impossible to understand or explain, unless they are viewed in the light of these beliefs. A moral logic, that is a way of thinking of interpersonal relations in moral terms, gives shape to and justifies the clinical condition, and finds consistent expression in abnormal eating behaviour. The analysis offered here is not mainstream either in philosophy (eating disorders are in fact seldom the subject of philosophical investigation) or in clinical psychology (the methods of philosophical analysis are in fact seldom utilised in clinical psychology). However, this paper offers a important contribution to the understanding of such a dramatic and widespread condition, bringing to light the deepest reasons, which are moral in nature, that contribute to the explanation of this complex phenomenon. (shrink)

There are around 94 000 000 obese people in the US alone, where 30% of the population is classified as obese.1 In industrialised countries, cardio-vascular diseases, associated with obesity and lack of physical activity, are the leading causes of death.Many millions of people affected by obesity expose themselves to stroke, heart attack, atherosclerosis, type-2 diabetes, osteoarthritis and other joint problems, sleeping problems , cancer, and psychological illnesses such as depression.While both in the United States and in the United ….

This paper investigates legal and moral justificationsof coerced treatment for psychiatric patients who aredetained on the grounds that they may harm others.While the general issues concerning compulsorytreatment and detention have been widely canvassed, ithas seldom, if ever, been noticed that the moralreasons that we may have to detain a person whoappears to be dangerous to others are different fromthe moral reasons we may have to treat him or her. For example, it has not been noticed that compulsorydetention and compulsory treatment (...) are supported bytwo different moral principles, namely the Principleof Harm and the Principle of Beneficence, and,therefore, that the arguments which support compulsorydetention do not also support compulsorytreatment. The conceptual confusion between legitimacyof compulsory detention and legitimacy of compulsorytreatment is exacerbated by the ambiguous wordingutilised in S 3 of the UK Mental Health Act, whichimplies that treatment may be necessary for theprotection of others. Failure to pay attention to these distinctions has led to tragic consequences, in terms of violations of individual autonomy and in terms of public safety. (shrink)

Sport and physical activity is an area that remains relatively unexplored by contemporary bioethics. It is, however, an area in which important ethical issues arise. This paper explores the case of the participation of people with anorexia nervosa in exercise. Exercise is one of the central features of anorexia. The presence of anorexics in exercise classes is becoming an increasingly sensitive issue for instructors and fitness professionals. The ethics of teaching exercise to anorexics has, however, seldom, if ever, been addressed. (...) Codes of ethics and legislation do not offer guidelines pertinent to the case and it is left unclear whether anorexics should be allowed to participate in exercise classes. It is shown by this paper that there are strong ethical reasons to let anorexics participate in exercise classes. However, the paper also explains why, despite these apparently cogent ethical reasons, there is no moral obligation to allow a person with anorexia to take part in exercise/sports activities. (shrink)

In 2002, a child was abandoned in a Burger King restaurant in Amsterdam by a Chinese woman, who hoped that the baby would be picked up by someone able to give the child a better life. She was convicted for child abandonment and imprisoned. Whereas some forms of child abandonment are criminalised, others are socially accepted and not even on the ethics agenda. This paper is an invitation to reflect on the inconsistency in the ways in which we prosecute, punish (...) or try to correct some forms of child abandonment and yet make allowances for others. (shrink)

Stem cell research represents the most promising field of investigation for treatment of many degenerative diseases. The veto against this research condemns millions of people to a life with little hope of cureO vous, les boutefeux, ô vous les bons apôtres, Mourez donc les premiers, nous vous cédons le pas, Mais de grâce, morbleu! laissez vivre les autres!Last year, Rome hosted the first meeting of the World Congress For Freedom of Scientific Research.The Congress was organised by the Luca Coscioni Association, (...) an organisation of scientists, patients and citizens committed to freedom of scientific research and the assertion of the rights of patients and disabled people.The Congress was exceptional for at least three reasons:First, the moving force of the whole congress, and of the many struggles for freedom conducted by the Luca Coscioni Association, has been Luca Coscioni himself, the President of the Association. Despite the severe degenerative illness that rendered Luca immobile and destined him to tragic and premature death, Luca remained committed to the ideals of freedom, and on the first day of the Congress, just days before his death, he eloquently expressed his appeal. This not only touched every one present, but also reminded us all that when we talk of scientific research, we talk of real people, who have real lives and real illnesses, and who are destined to die prematurely and in agony unless treatment is found—and hope for treatment for many degenerative diseases bears upon embryonic stem cell research. Luca reminded us that while the public discusses …. (shrink)

In this article, I examine the rhetoric of democratic science within the field of synthetic biology. The still emerging field of synthetic biology claims to be a new kind of science based on the promises of affordable medicines, environmental bioremediation, and democratic, do-it-yourself science practices. I argue that the formation of a more democratic, DIY portion of this field represents an intervention into ethics debates by becoming “the proper informed public.” Through an analysis of twelve DIY and community-based synthetic biology (...) organizations’ websites, I found that democratic science was presented as a novel, progressive approach to science that addresses ethical concerns and at the same time produces better scientific results. In part, these claims were made possible through a reconfiguring of the boundaries between Science and the Public where scientists lay claim to solidarity with the public at large in opposition to traditional biosciences and Big Bio. My research suggests that the superficial use of the language of rights and democracy relegitimizes the primacy of scientific discovery to solve societal problems. I further suggest that by becoming the proper informed public, ethical challenges from publics critical of genetic sciences may become delegitimized. (shrink)