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Chunk #33 — (2) The Varieties of Uncertainty — (b) Conceptual Uncertainty

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What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
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Genomic science has also brought us back, again and again, to long-standing debates about the nature of illness — questioning how much of an individual’s risk of developing diseases lies with the family, the community, and the society, and thus weighing interventions focused solely on the individual against interventions that include or primarily target social factors. Newborn screening debates bring these questions to the fore, as genetic risk factors discovered in screening an individual infant may point to risk factors for the parents or other family members [B-7]. The search for genetic factors in addictions has also highlighted the problems of solely individualistic conceptions of disease. Recent examination of media representations of addiction has revealed a dichotomy between genetic determinism, on the one hand, and simple “willpower” on the other [G-5]. Yet, despite the proven success of social interventions such as indoor smoking bans and restrictions on tobacco sales, the role of social factors has been largely ignored in public, media, and policy discourses, which focus mainly on individual genetic susceptibilities and individual pharmaceutical interventions.