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Abstract:
Genetics discrimination has become a large concern among scholars, scientists, the media, and the public. In the rush to confront serious and legitimate concerns about potential abuses of genetic information, policy makers and commentators often fail to ask whether these concerns are unique. Most scholarship on genetics, explicitly or implicitly, adopts a "genetics exceptionalism" perspective, i.e., a view that genetic information is qualitatively different from other medical information and therefore raises unique social issues. This article challenges genetics exceptionalism and argues that protections against abuse of information should not be limited to genetic information, but should extend to other medical information. The article begins by describing the allure of genetics exceptionalism among the popular culture, media, scientists, and policy makers. This perspective has inspired forty-four states to enact genetics legislation and numerous genetic bills at the federal level. Attempts to define genetic information for legislative purposes, however, demonstrate the inherent difficulty in trying to distinguish genetic information from medical information. Moreover, genetic information is an under- and over-inclusive category with respect to the policy concerns motivating genetics legislation. Not all genetic information requires protective legislation, making genetics legislation over-inclusive. More important, a great deal of other medical information shares many of the features of genetic information that have inspired this legislation, making it dramatically under-inclusive. This under-inclusiveness is problematic because it results in inequities between similarly situated individuals and, worse, because it exacerbates class inequities. While genetic risks transcend socio-economic class, non-genetic risks frequently do not. The poor and minorities face a disproportionate degree of non-genetic, environmental risks and, therefore, are disproportionately disadvantaged by laws that protect against discrimination based only on genetic risks. This article asserts that the resulting inequities of genetics legislation raise questions about important, though under-enforced, constitutional values and norms embodied in the Equal Protection Clause. Although genetics legislation would probably survive judicial review, equal protection theory, nevertheless, offers normative policy reasons why legislators should find the inequities of genetics legislation morally problematic. In order to avoid those inequities, the article concludes by offering suggestions for more comprehensive protections that extend beyond genetic information. In the wake of the recent privacy regulations promulgated by the Department of Health and Human Services, which set a national "floor" of privacy standards, states must begin to evaluate the relationship between their genetics privacy statutes and the HIPAA privacy regulations. This provides an opportune moment for state legislatures to reject a genetics-exceptionalism approach and develop more comprehensive reform in the area of insurance/employment discrimination and privacy.
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Abstract:
As testing for late-onset genetic conditions becomes increasingly available, concerns have been raised about the psychosocial costs of obtaining such genetic information. Anxiety and distress can result from testing that offers only probabilistic results as to whether and when the condition will develop, especially when treatment is limited or unavailable. Many have therefore urged caution regarding late-onset testing, suggesting that knowledge can sometimes be toxic. This article argues that the same circumspection does not exist with respect to prenatal testing, which has become de rigeur as a result of a complex mix of norms within the medical community, society, and the legal profession. Unfortunately, for many patients, this routinization of prenatal testing has made true choice illusive and impoverished the informed consent process. Patients often fail to consider the possibility of not undergoing testing and many are unaware of the emotional implications of such testing and are unprepared for the difficult choices they may face. The article concludes with some comments about the broader social implications of this routinization, suggesting that the diminished informed consent process has contributed to an inability to discuss the moral dimensions of reproductive technology today and in the future.
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