Genetic exceptionalism and legislative pragmatism.
Genetic exceptionalism and legislative pragmatism.
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遗传例外论和立法实用主义。
DOI：
10.1111/j.1748-720x.2007.00154.x
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发表时间：
2007
期刊：
影响因子：
--
通讯作者：
Rothstein,MarkA
中科院分区：
文献类型：
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作者：
Rothstein,MarkA
围绕遗传学的最重要和最有争议的政策问题之一是遗传信息是否应该与其他医学信息分开处理。托马斯·默里（Thomas Murray）借用了早期术语“艾滋病毒例外论”，将遗传学引发独特问题的观点称为“遗传例外论”。 1 然而，遗传信息的使用是否应与其他健康信息分开处理的问题不仅仅是一个学术问题。自1990年人类基因组计划启动以来，几乎每个州都颁布了立法禁止医疗保险中的基因歧视；三分之二的州颁布了禁止就业中基因歧视的法律，并且还颁布了其他州法律来处理人寿保险、基因隐私和基因检测方面的基因歧视。 2 国会法案还将禁止医疗保险和就业方面的基因歧视。 3 关于这个问题已经写了很多文章。 4 大多数评论家都对基因例外论提出警告，但没有效果。 5 立法者似乎对特定基因的法律很着迷，而且他们可能实际上认为特定基因的法律是保护隐私和打击歧视的最佳方式。或者也许他们只是认为这样的法律总比没有好，尽管他们认识到这些法律在概念和实践中都存在缺陷。许多持后一种观点的立法者无疑也得出结论，处理医疗保健和就业歧视等有争议问题的更一般性的法律几乎没有机会获得通过。在考虑了支持和反对遗传例外论的论点之后，我在本文中认为遗传例外论代表了糟糕的公共政策。由于更理想和影响更深远的“通用”法律往往在政治上不可行，立法者可能仍然合理地认为制定针对基因的法律总比什么都不制定要好。但只有在有限的条件下，该决定才是合理的。
One of the most important and contentious policy issues surrounding genetics is whether genetic information should be treated separately from other medical information. The view that genetics raises distinct issues is what Thomas Murray labeled “genetic exceptionalism,” borrowing from the earlier term “HIV exceptional-ism.” 1 The issue of whether the use of genetic information should be addressed separately from other health information is not merely an academic concern, however. Since the Human Genome Project began in 1990, nearly every state has enacted legislation prohibiting genetic discrimination in health insurance; two-thirds of the states have enacted laws prohibiting genetic discrimination in employment, and other state laws have been enacted dealing with genetic discrimination in life insurance, genetic privacy, and genetic testing. 2 Bills in Congress also would prohibit genetic discrimination in health insurance and employment. 3 Much has been written on the issue. 4 Most commentators have cautioned against genetic exceptionalism, but to no avail. 5 Legislators seem enamored of geneticspecific laws, and it is possible that they actually believe that genetic-specific laws are the best way to protect privacy and combat discrimination. Or perhaps they just think such laws are better than none at all, even though they recognize that the laws are flawed conceptually and in practice. Many legislators who hold the latter view undoubtedly have also concluded that more general laws dealing with such contentious issues as access to health care and employment discrimination have little chance of being passed. After considering the arguments in favor of and opposed to genetic exceptionalism, I argue in this article that genetic exceptionalism represents poor public policy. Because more desirable and far-reaching “generic” laws are often politically infeasible, legislators may still reasonably decide that it is better to enact a genetic-specific law than nothing at all. But there are only limited conditions in which that decision is reasonable.