Many people are vaguely disquieted by developments (real or imagined) that could alter minds and bodies in novel ways. Romantics and Greens tend to idealize the natural and demonize technology. Traditionalists and conservatives by temperament distrust radical change. Egalitarians worry about an arms race in enhancement techniques. And anyone is likely to have a "yuck" response when contemplating unprecedented manipulations of our biology. The President's Council has become a forum for the airing of this disquiet, and the concept of "dignity" (...) a rubric for expounding on it. This collection of essays is the culmination of a long effort by the Council to place dignity at the center of bioethics. The general feeling is that, even if a new technology would improve life and health and decrease suffering and waste, it might have to be rejected, or even outlawed, if it affronted human dignity. (shrink)

As parents of a young woman who very much resembles Ashley, we recognize the way her parents speak of their daughter’s preciousness, and of the love and joy she brings into their life. We know too well the hardships associated with rearing a child with severe physical and intellectual disabilities, especially in our own society, unyielding as it is to the medical needs even “normals” have. We would not have our daughter Sesha undergo similar interventions. We do not believe she (...) is a perpetual child, even if her intellectual capacities do not exceed those of a child, for she has lived for thirty-seven years in this world and with that has acquired knowledge, sensitivities, and sensibilities that no child of “comparable” capacities could have. (shrink)

ABSTRACT Genetics research, like research in sociology and anthropology, creates risks for groups from which research subjects are drawn. This paper considers what sort of protection for groups from the risks of genetics research should be provided and by whom. The paper categorizes harms by distinguishing process‐related from outcome‐related harms and by distinguishing two kinds of group harms. It argues that calls for community engagement are justified with respect to some kinds of harms, but not with respect to others; and (...) it cautions that community engagement may itself be harmful. (shrink)

The story of Ashley, a nine-year-old from Seattle, has caused a good deal of controversy since it appeared in the Los Angeles Times on January 3, 2007.1 Ashley was born with a condition called static encephalopathy, a severe brain impairment that leaves her unable to walk, talk, eat, sit up, or roll over. According to her doctors, Ashley has reached, and will remain at, the developmental level of a three-month-old.

This paper critically engages with Tom Shakespeare’s book Disability rights and wrongs. It concentrates on his attempt to demolish the social model of disability, as well as his sketch of an “alternative” approach to understanding “disability”. Shakespeare’s critique, it is argued, does British disability studies a “wrong” by presenting it as a meagre discipline that has not been able to engage with disability and impairment effects in an analytically sophisticated fashion. What was required was a measured presentation and evaluation of (...) the rich mix of theoretical and empirically based ideas to be found in the discipline, as the groundwork for forward thinking located within a social oppression paradigm. Shakespeare’s undermining of the discipline’s credibility in the eyes of outsiders and newcomers represents a diversionary missed opportunity by an influential writer and activist.Shakespeare’s book1 has certainly stirred up debate, and invited a flurry of angry reviews, in disability studies in the UK—the social science discipline that has been developing radical ideas about disability and disablism since the 1980s. Peopled by both disabled academics and like-minded non-disabled researchers and writers, the DS community recognises that Shakespeare’s book seeks to deliver a fatal wound to what he sees as its sacred cow: the British social model of disability.Shakespeare explains that what he calls the “strong” version of the social model of disability was formulated by Michael Oliver, a leading DS writer and disability activist, on the basis of the social and political ideas advanced in the 1970s by a group of disabled individuals fighting to free themselves from what they experienced as an oppressive care system that relegated and segregated people with serious impairments to residential institutions and to the category of the unemployable.2 3 In short, the social model asserts that “disability” is not caused …. (shrink)

In a recent case, parents of a profoundly developmentally disabled child asked physicians to use high-dose oestrogen to inhibit the growth of their child in the interests of allowing better care of her as she ages. The physicians asked whether such an intervention would be ethically acceptable. Such an intervention would seem to violate the rights of the child to bodily integrity and to normal growth, making the intervention ethically objectionable. But in this paper, I argue that in some rare (...) instances, a developmentally disabled child may have only a minimal right against interference with her growth. In those instances, parents may be acting ethically if they use medical interventions to inhibit the growth of their child for the purposes of facilitating better care. But they may so intervene only when the child's disabilities are so profound that the child has no personal interest in developing an adult size and when the intervention is the least intrusive means available for facilitating the care of the child. (shrink)

A new political movement has arisen in bioethics, self‐consciously distingushed from the rest of the ield and characterized by a new way of writing and arguing. Unfortunately, that new method is mean‐spirited, mystical, and emotional. It claims insight into ultimate truth yet disavows reason.

Oestrogen treatment for girls, to prevent psychosocial problems due to extreme tallness, has been available for almost 50 years but uncertainty about its position prevails. The ethical problems of this treatment are focused on in this paper. After a brief overview on historical and medical aspects, ethical issues such as the general justification of oestrogen treatment, evaluation of its success and ethical concerns related to research in this subject are dealt with in detail.