"In these essays, health care professionals, scholars, and members of the disability community debate the implications of prenatal testing for people with disabilitties and for parent-child relationships generally."--Cover.
People with disabilities use more medical care and see health professionals more often than do those of the same age, ethnic group, or economic class who do not have impairments. An indisputable medical goal is.
"Bringing the concerns of different communities together in a single volume makes it possible to appreciate the mosaic of human issues more fully and forces us to anticipate the challenges that may arise -- and that will require our attention -- as the genetic revolution proceeds." -- JAMA "A cautious look at the effects of genetic discoveries on society... The issues raised by this book are valid, and all scientists should be aware of them. I often found myself nodding in (...) agreement." -- New England Journal of Medicine. (shrink)
In this paper, we critically appraise institutions for people with disabilities, from residential facilities to outpatient clinics to social organizations. While recognizing that a just and inclusive society would reject virtually all segregated institutional arrangements, we argue that in contemporary American society, some people with disabilities may have needs that at this time can best be met by institutional arrangements. We propose ways of reforming institutions to make them less isolating, coercive, and stigmatizing, and to provide forms of social support (...) the larger society denies many people with disabilities. Although these reforms far fall far short of abolition, they draw heavily on the work of disability scholars and advocates who call for the complete replacement of institutional arrangements with systems of supported living. The consideration of non-ideal-solutions is useful not only in reforming existing institutional arrangements, but in bringing disability scholarship and advocacy to bear on bioethics, which has paid little attention to institutions for people with disabilities. We intend this paper to redress the neglect within mainstream bioethics of the complex ethical problems posed by institutions. (shrink)
It is gratifying that thoughtful philosophers and bioethicists like Mahowald and Nelson are continuing to address the objections to prenatal testing that have been made by disability scholars and advocates. But it is frustrating to see those objections presented in ways that reflect the doubts of those who reject them more than the intentions of those who make them, in ways that make those objections appear censorious toward pregnant women and prospective parents or naïve about nonverbal expression. We recognize that (...) disability critics share the responsibility for these misunderstandings, that their objections to prenatal disability testing have not always been made as clearly or consistently as they might have been. We therefore welcome this opportunity for clarification and rebuttal. Briefly, we will argue against Mahowald that it is not apparent how prospective parents could have a duty to potential offspring requiring them to prevent the birth of any child expected to have a life worth living. And we will remind Nelson that our primary concern is with the perpetuation of stigma; that even if any reason for abortion can be framed in terms of a trait of the fetus to be aborted, only certain reasons for abortion are based on the rejection of future children because of stigmatized traits. (shrink)
We are gratified by Nelson's response to our commentary. It shows, for the first time, an appreciation of the distinctive character of our criticism of individual decisions to test and terminate for fetal impairment. Although we still find much to disagree with in Nelson's characterization and critique of our views, he has given us a welcome opportunity to clarify and develop them.
It is gratifying that thoughtful philosophers and bioethicists like Mahowald and Nelson are continuing to address the objections to prenatal testing that have been made by disability scholars and advocates. But it is frustrating to see those objections presented in ways that reflect the doubts of those who reject them more than the intentions of those who make them, in ways that make those objections appear censorious toward pregnant women and prospective parents or naïve about nonverbal expression. We recognize that (...) disability critics share the responsibility for these misunderstandings, that their objections to prenatal disability testing have not always been made as clearly or consistently as they might have been. We therefore welcome this opportunity for clarification and rebuttal. Briefly, we will argue against Mahowald that it is not apparent how prospective parents could have a duty to potential offspring requiring them to prevent the birth of any child expected to have a life worth living. And we will remind Nelson that our primary concern is with the perpetuation of stigma; that even if any reason for abortion can be framed in terms of a trait of the fetus to be aborted, only certain reasons for abortion are based on the rejection of future children because of stigmatized traits. (shrink)