This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The (...) book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

It is widely assumed that disability is typically a bad thing for those who are disabled. Our purpose in this essay is to critique this view and defend a more nuanced picture of the relationship between disability and well-being. We first examine four interpretations of the above view and argue that it is false on each interpretation. We then ask whether disability is thereby a neutral trait. Our view is that most disabilities are neutral in one sense, though we cannot (...) make simple generalizations about disability's relationship to well-being in other important senses. After defending this view, we discuss its practical implications for selective abortion for disability, nondisabled people's interactions with disabled people, and the use of QALYs in health policy. (shrink)

This book reconceives disability as a set of social relations and practices, as experienced embodiment, and as an emancipatory movement, as well as a biomedical phenomenon. The author brings new attention to complex ethical questions surrounding disability, looking at not only the biomedical understanding of impairment, but also its cultural representations and social organization.

It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together (...) an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world. (shrink)

The Nobel prize-winning molecular biologist Walter Gilbert described the mapping and sequencing of the human genome as “the grail of molecular biology.” The implication, endorsed by enthusiasts for the new genetics, is that possessing a comprehensive knowledge of human genetics, like possessing the Holy Grail, will give us miraculous powers to heal the sick, and to reduce human suffering and disabilities. Indeed, the rhetoric invoked to garner public support for the Human Genome Project appears to appeal to the best of (...) the Western tradition's enthusiasm for progress: the idea of improving human lives through the practical application of scientific knowledge. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. The tension between the (...) analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means (...) there cannot be a sharp line between ‘academic’ or ‘objective’ bioethics, and advocacy/activism, but a continuum of bioethicists’ engagement and an associated continuum of responsibilities. (shrink)

Bioethics is a practically oriented discipline that developed to address pressing ethical issues arising from developments in the life sciences. Given this inherent practical bent, some form of advocacy or activism seems inherent to the nature of bioethics. However, there are potential tensions between being a bioethics activist, and academic ideals. In academic bioethics, scholarship involves reflection, rigour and the embrace of complexity and uncertainty. These values of scholarship seem to be in tension with being an activist, which requires pragmatism, (...) simplicity, certainty and, above all, action. In this paper I explore this apparent dichotomy, using the case example of my own involvement in international efforts to end forced organ harvesting from prisoners of conscience in China. I conclude that these tensions can be managed and that academic bioethics requires a willingness to be activist. (shrink)

Both mainstream and disability bioethics sometimes contend that the self-assessment of disabled people about their own well-being is distorted by adaptive preferences that are only held because other, better options are unavailable. I will argue that both of the most common ways of understanding adaptive preferences—the autonomy-based account and the well-being account—would reject blanket claims that disabled people’s QOL self-assessment has been distorted, whether those claims come from mainstream bioethicists or from disability bioethicists. However, rejecting these generalizations for a more (...) nuanced view still has dramatic implications for the status quo in both health policy and clinical ethics. (shrink)

A discussion of the connection between activism and academia in bioethics, highlighting the author’s own trajectory, exploring the extent to which academics have an obliation to be ‘judges’ rather than ‘barristers’ (as explored by Jonathan Haidt) and asking questions about the relationship of disability to positions in bioethics.

ABSTRACT In Germany, applied ethics is under attack from a diverse coalition of left‐wing organisations, disability groups, and some conservative defenders of a strict doctrine of the sanctity of human life. The attack has been pressed to the point of forcing the cancellation of conferences and disrupting lectures or classes so that they cannot take place. This essay describes the extent and nature of the attack, and makes a preliminary assessment of its significance.

In academic philosophy and popular culture alike, pity is often framed as a virtue or the emotional underpinnings of virtue. Yet, people who are the most marginalized and, hence, most often on the receiving end of pity, assert that it is anything but an altruism. How can we explain this disconnect between an understanding of pity as a virtuous emotion versus a social harm? My paper answers this question by showing how pity is not only an emotion, but also a (...) power relation. Using the ideas of Sartre’s Anti-Semite and Jew, I explain how pity is understood as harmful by the one pitied because he is acutely aware of how it obscures his unequal power relation to the pitier and denies the pitier’s role in creating this domination. This is all done with an eye toward what I see as the quintessential class of people who are harmed by pity: people with disabilities. (shrink)

It is 2 a.m. I am very sick. I am not sure how long I have been hospitalized. The last two or three days have been a blur, a parade of procedures and people. I had a bloody debridement for a severe, large, and grossly infected stage four wound‐the first wound I have had since I was paralyzed in 1978. I know the next six months or longer are going to be exceedingly difficult. I will be bedbound for months, dependent (...) upon others for the first time in my adult life. As these thoughts are coursing through my mind, a physician I have never met and the registered nurse on duty appear at my door. As they put on their gowns I am weary but hopeful. Surely there is something that can be done to stop the vomiting. The physician examines me with the nurse's help. Like many other hospitalists that have examined me, he is coldly efficient. At some point, he asks the nurse to get a new medication. What transpired after the nurse exited the room has haunted me. Paralyzed me with fear. The hospitalist asked me if I understood the gravity of my condition. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. He went on to tell me I was on powerful antibiotics that could cause significant organ damage. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. (shrink)

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled (...) people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience. (shrink)