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• W1528784798 abstract "1. Introduction Modern genetics and its applications promise a radical transformation of health care practice and even conceptions of health and illness. Genetic development entails a perspective, a set of concepts, together with a variety of techniques, which are increasingly impacting on a number of areas of medicine. The impact is already observable in the emergence of genetic counseling and clinical genetic units, which cooperate with an increasing range of other medical disciplines. In this context, one already observes the emergence of new specialties, new professional relationships, and, to a greater or lesser extent, a partial re-organization of clinical medicine as well as even more profound transformations. As Mendelsohn (1999:90) suggests: Old boundaries are being challenged concerning what is ethical, what is normal, what is human? ... The genetic sciences are robust and challenging, even if not always wise. By contrast, social and ethical analysis and social and ethical policy making, while earnest, lack clarity and focus. Technical developments are taking place in a recognizable range of institutions guided by a mix of scientific enthusiasm, institutional imperative, search for rewards (both monetary and professional) and an honest attempt to put science to work. Social and moral discourse, by comparison, seems scattered, unfocused and at times quixotic -- how many times is the paradoxical identified? This lack of disciplined analysis and lack of firm institutional bases has weakened the sometimes important questions asked and proposals made. The science seems strong (too strong?) and goal-oriented and quite prepared to ignore important caveats. The expectation is that genetic technology will be applied in four waves, moving from genetic testing and screening for inherited disease (contentious because most existing tests only indicate susceptibility; there is no certainty) to pharmacogenetics (using genetic testing to match patients with existing therapeutic options), to population genetics (which may potentially aid the development of new therapeutics including gene therapy), to pharmacogenomics (designing drugs and genetic vaccines to meet the specific needs of different patient groups suffering from the same disease). Research, pilot schemes and more developed services are already being supported by European and North American healthcare providers in some of these areas. As shown in earlier work (Machado, 1998), the introduction and widespread application of a high-tech or advanced scientific medicine result in ethical, legal, and organizational problems, challenges, and transformations.(1) Since the 1970s, the technical advances in human genetics -- and its applications in the clinic -- have far outstripped policy and regulative formation and created important and dangerous strains in the relationship between genetic science and society. In general, policy and regulation tend to lag behind technical developments Mendelsohn (1999:64). As Mendelsohn (1999:64) argues: The task for the immediate future is to establish a means to integrate the social and moral critique into the decision-making processes of the practical sciences, so that social analysis becomes part of a feedback system to assure wisdom in scientific advance, not merely technical achievement. There are potentially significant costs to allowing social policy to lag behind scientific and technical advance. Solving the technically sweet problem first and only then turning to examine the moral and social consequences, then turning to examine the moral and social consequences has, in the past and can in the future, prove to be too costly. We have launched a research program (Machado, 2000), employing a research strategy similar to that in Machado's 1998 book. This entails an integrated investigation and analysis of key ethical, legal, and clinical administrative problems -- and attempts to solve the problems - associated with the introduction of genetic knowledge and techniques in clinical practice. …" @default.
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• W1528784798 date "2000-01-01" @default.
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• W1528784798 title "The New Genetics: A Social Science and Humanities Research Agenda" @default.
• W1528784798 doi "https://doi.org/10.2307/3341610" @default.
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