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10 Ethical, Legal, and Social Implications
Pages 202-218

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From page 202...
... On the other hand, such findings could lead to stigmatization and could have negative effects on the ability of individuals or groups to receive appropriate health care and insurance coverage. Consequently, it is important that transdisciplinary research on the impact on health of interactions among social, behavioral, and genetic factors also encompasses investigations that improve our understanding of how individuals make use of this information and how policymakers and the public interpret such research.
From page 203...
... Environmental genomics includes both the ways in which environmental factors cause genetic damage as well as the ways in which genetic variation affects responses to environmental exposures. 2Pharmacogenetics is the "branch of genetics that studies the ways in which genetically determined variations affect responses to drugs in humans or laboratory organisms" (Wordnet 2.0, 2003)
From page 204...
... Nor are phenotypic effects readily predictable simply by characterizing the relevant genetic sequences, behaviors, and social environments, either together or individually. Network theory teaches that living systems are remarkably resistant to change and that the perturbation of one part tends to lead to a countervailing response by another in order to promote stability (Barabasi, 2002)
From page 205...
... For the purposes of this discussion, it is assumed that it will not be possible to alter particular gene sequences in an individual, at least not in the near future. Thus, any efforts to improve health and well-being in the population as a whole will necessarily depend on using pharmacologic and other medical interventions as well as on changing the social environments and individual health behaviors.
From page 206...
... 206 GENES, BEHAVIOR, AND THE SOCIAL ENVIRONMENT An example may be useful here. It is known that individuals who have one copy of certain mutations in the gene that codes for alpha-1-antitrypsin (A1AT)
From page 207...
... . Policies regarding who should bear the costs of behavioral choices and environmental exposures are mixed as well.
From page 208...
... · People may have more control over access to some sorts of personal risk information than to others. For example, the fact that an individual smokes cigarettes is difficult to hide, while whether that person has a genetic variant that affects the metabolism of that smoke may not be apparent without a specific test.
From page 209...
... . Similarly, behaviors and social environments and practices vary among cultural groups.
From page 210...
... 210 GENES, BEHAVIOR, AND THE SOCIAL ENVIRONMENT sense to teach only men about the importance of wearing helmets, because most men do not ride, while some women do. Moreover, the use of historically disfavored groups as proxies for genetic variation, behavior, or social environment creates the risk of reinforcing old prejudices and stereotypes.
From page 211...
... . Studying interactions among variations in social, behavioral, and genetic factors requires the collection of information about relevant DNA variants as well as clinical or other phenotypic information, which often includes sensitive personal information about behavior and social factors.
From page 212...
... 212 GENES, BEHAVIOR, AND THE SOCIAL ENVIRONMENT provides the greatest security, but if this is done correctly, it may require eliminating many variables. Furthermore, this method precludes following study participants prospectively for disease incidence by adding new clinical data.
From page 213...
... This threshold rarely would be met in research involving the impact of interactions among social, behavioral, and genetic factors on health because the relative risks are almost always relatively modest, and because behavioral and social factors can be difficult to quantify. In any event, it is critical that investigators and IRBs define the criteria for the disclosure of individual results at the outset of the project.
From page 214...
... For example, researchers may have focused initially on cardiovascular disease risk, but new findings may suggest that the exploration of factors contributing to Alzheimer's disease also may be fruitful (e.g., the work currently being conducted on apolipoprotein E isoforms)
From page 215...
... Particularly in light of evidence that research participants often are not truly informed, more work needs to be done to learn how to communicate this information effectively. These issues merit particular attention in studies of the interactions among social, behavioral, and genetic factors on health in order to ensure that participants truly understand what is at stake in the research.
From page 216...
... International Journal of Law and Psychiatry 5(3-4)
From page 217...
... 2002. A comprehensive review of genetic association studies.
From page 218...
... 2001. Consent to the use of stored DNA for genetics research: A survey of attitudes in the Jewish population.


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