4. Services and facilities for intellectually disadvantaged people

"First published in 1974, Charles Fried's Medical Experimentation is a classic statement of the moral relationship between doctor and patient, as expressed within the concept of personal care. This concept is then tested in the context of medical experimentation and, more specifically, the randomized controlled trial (RCT). Regularly referred to as a point of departure for ethical and legal discussions of the RCT, the book has long been out of print. This new, second edition includes a general introduction by Franklin Miller and the late Alan Wertheimer, a reprint of the 1974 text, and an in-depth analysis by Harvard Law School scholars I. Glenn Cohen and D. James Greiner which discusses the extension of RTCTs to social science and public policy contexts. The volume concludes with a new essay by Charles Fried that reflects on the original text and how it applies to the contemporary landscape of medicine and medical experimentation." -- Back cover.

NOW FEATURING A NEW AFTERWORD, "PANDEMIC ETHICS" From two eminent scholars comes a provocative examination of bioethics and our culture’s obsession with having it all without paying the price. Shockingly, the United States has among the lowest life expectancies and highest infant mortality rates of any high-income nation, yet, as Amy Gutmann and Jonathan D. Moreno show, we spend twice as much per capita on medical care without insuring everyone. A “remarkable, highly readable journey” (Judy Woodruff ) sure to become a classic on bioethics, Everybody Wants to Go to Heaven but Nobody Wants to Die explores the troubling contradictions between expanding medical research and neglecting human rights, from testing anthrax vaccines on children to using brain science for marketing campaigns. Providing “a clear and compassionate presentation” ( Library Journal ) of such complex topics as radical changes in doctor-patient relations, legal controversies over in vitro babies, experiments on humans, unaffordable new drugs, and limited access to hospice care, this urgent and incisive history is “required reading for anyone with a heartbeat” (Andrea Mitchell).

Biotechnology (BT) offers exciting and promising prospects for healing the sick and relieving the suffering. But because of their impressive powers to alter the workings of body and mind, the "dual uses" of the same technologies make them attractive also to people who are not sick but who would use them to look younger, perform better, feel happier, or become more "perfect." These applications of BT present us with difficult challenges. This report considers such possible "beyond therapy" uses and explores both their scientific basis and the ethical and social issues they will raise. In enjoying the benefits of BT, we will need to hold fast to an account of the human being, seen not in material or mechanistic or med. terms, but in psychic and moral and spiritual ones.

Introduction -- Bioethics as politics -- Bioethics progressing / Sam Berger and Jonathan D. Moreno -- Can there be a progressive bioethics? / Richard Lempert -- Bioethics as progressive -- Politics, progressivism, and bioethics / R. Alta Charo -- Bioethics : the new conservative crusade / Kathryn Hinsch -- Justice that you must pursue : a progressive American bioethics / Laurie Zoloth -- The sociology of political bioethics -- Professionalism and politics : biomedicalization and the rise of bioethics / Paul Root Wolpe -- The tension between progressive bioethics and religion / John H. Evans -- Can national bioethics commissions be progressive? should they? / Eric M. Meslin -- Conflicting views of biotechnology -- Technoprogressive biopolitics and human enhancement / James J. Hughes -- Biopolitics, mythic science, and progressive values / Marcy Darnovsky -- Progress beyond politics? -- Can bioethics transcend ideology? (and should it?) / Arthur L. Caplan -- A Catholic progressive on care and conscience / Michael Rugnetta -- Reforming health care : ends and means / Daniel Callahan -- Finding common ground in bioethics? / William F. May -- Afterword

Well aware of Jews having once been the victims of Nazi eugenics policies, many Jews today have an ambivalent attitude toward new genetics and are understandably wary of genetic forms of identity and intervention. At the same time, the Jewish tradition is strongly committed to medical research designed to prevent or cure diseases. Jews and Genes explores this tension against the backdrop of various important developments in genetics and bioethics—new advances in stem cell research; genetic mapping, identity, testing, and intervention; and the role of religion and ethics in shaping public policy. Jews and Genes brings together leaders in their fields, from all walks of Judaism, to explore these most timely and intriguing topics—the intricacies of the genetic code and the wonders of life, along with cutting-edge science and the ethical issues it raises.

My 'discovery' of the Polish School of philosophy of medicine stemmed from my studies in the genesis of Ludwik Fleck's epistemology. These studies, and my interest in the scientific roots of Fleck's epistemology were a nearly 'natural' result of my own biography: like Fleck I had been trained, an had worked as an immunologist, and had later switched to studies in the social history of medicine and biology. Moreover, it so happened that Fleck's book, Genesis and Development of a Scientific Fact -the description of a science as it is, not as it should be -was the first epistemological study in which I found echos of my experience in the laboratory. My interest in Fleck was also highlightened by the fact that in his works, and, as I discovered later, in the works of his predecessors of the Polish School of philosophy of medicine, was formulated the problem that had stimulated my interest in the history of medicine and biology, and is still central to my present investigations: the relationships between biological knowledge and clinical practice. The writing of the book was made possible through to the help of many colleagues and friends. The unfailing support for my research, whatever its subject might be, from my colleagues from Unit 158 of INSERM and in particular from its head Patrice Pinell, has made my study of the Polish School possible.