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Investigations into the interplay of biological and legal conceptions of life, from government policies on cloning to DNA profiling by law enforcement.Legal texts have been with us since the dawn of human history. Beginning in 1953, life too became textual. The discovery of the structure of DNA made it possible to represent the basic matter of life with permutations and combinations of four letters of the alphabet, A, T, C, and G. Since then, the biological and legal conceptions of life have been in constant, mutually constitutive interplay—the former focusing on life's definition, the latter on life's entitlements. Reframing Rights argues that this period of transformative change in law and the life sciences should be considered “bioconstitutional.”Reframing Rights explores the evolving relationship of biology, biotechnology, and law through a series of national and cross-national case studies. Sheila Jasanoff maps out the conceptual territory in a substantive editorial introduction, after which the contributors offer “snapshots” of developments at the frontiers of biotechnology and the law. Chapters examine such topics as national cloning and xenotransplant policies; the politics of stem cell research in Britain, Germany, and Italy; DNA profiling and DNA databases in criminal law; clinical trials in India and the United States; the GM crop controversy in Britain; and precautionary policymaking in the European Union. These cases demonstrate changes of constitutional significance in the relations among human bodies, selves, science, and the state.
An argument that the system of boards that license human-subject research is so fundamentally misconceived that it inevitably does more harm than good.Medical and social progress depend on research with human subjects. When that research is done in institutions getting federal money, it is regulated (often minutely) by federally required and supervised bureaucracies called “institutional review boards” (IRBs). Do—can—these IRBs do more harm than good? In The Censor's Hand, Schneider addresses this crucial but long-unasked question. Schneider answers the question by consulting a critical but ignored experience—the law's learning about regulation—and by amassing empirical evidence that is scattered around many literatures. He concludes that IRBs were fundamentally misconceived. Their usefulness to human subjects is doubtful, but they clearly delay, distort, and deter research that can save people's lives, soothe their suffering, and enhance their welfare. IRBs demonstrably make decisions poorly. They cannot be expected to make decisions well, for they lack the expertise, ethical principles, legal rules, effective procedures, and accountability essential to good regulation. And IRBs are censors in the place censorship is most damaging—universities. In sum, Schneider argues that IRBs are bad regulation that inescapably do more harm than good. They were an irreparable mistake that should be abandoned so that research can be conducted properly and regulated sensibly.
One of the founding fathers of bioethics describes the development of the field and his thinking on some of the crucial issues of our time.
A legal and moral analysis of medical decision making on behalf of those with such severe cognitive impairments that they cannot exercise self-determination.
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