Critiques and remedies: medical students call for change in ethics teaching.
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With the rapid development of genetic research and applications in health care there is some agreement among funding and regulatory bodies that the public(s) need to be equipped to deal with the choices that the new technologies will offer them, although this does not necessarily include a role for the public in influencing their development and regulation. This paper considers the methods and purpose of public consultations in the area of genetics including large-scale surveys of opinion, consensus conferences and focus groups. Consultation has been undertaken to enable the researchers/policy makers to see what the public do not know and plan more public education to make up the deficiency, to check on areas of concern so that public education can be used to address them or to gain a public mandate for a planned policy. An alternative and more recent approach is to find out what the public(s) do know and understand and to see how experts can learn from them in order to get a fuller view of technology in use.
In this article I explore disability as far more than individual private tragedy, suggesting it has a social location and reproduction. Within this context we look at the power relations associated with bioethics and its largely uncritical use of the biomedical model. Within that context the topics of genetics, euthanasia, and biotechnology are explored. In examining these topics a social account of disability is proposed as rejected knowledge. Accordingly we explore the political nature of bioethics as a project.
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Carson Strong's reply to my response to his article demonstrates what happens when there is unacknowledged disagreement about the facts of a case or about the meaning of the terms used to describe those facts. I hope that our dialogue will help reduce this disagreement.
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