Academic journal article The Hastings Center Report

Genetic Exceptionalism & Legislative Pragmatism: Can Passing Antidiscrimination Laws Ever Be a Bad Idea? Yes, If Broad Policy Reform Is Abandoned in Favor of Genetic-Specific Legislation. but in Spite of Its Serious Flaws, Both in Concept and in Practice, Genetic-Specific Legislation Is Sometimes Worth Passing Anyway

Academic journal article The Hastings Center Report

Genetic Exceptionalism & Legislative Pragmatism: Can Passing Antidiscrimination Laws Ever Be a Bad Idea? Yes, If Broad Policy Reform Is Abandoned in Favor of Genetic-Specific Legislation. but in Spite of Its Serious Flaws, Both in Concept and in Practice, Genetic-Specific Legislation Is Sometimes Worth Passing Anyway

Article excerpt

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 exceptionalism." (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 genetic-specific laws. Possibly, legislators 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 nothing, even though they recognize that the laws are flawed conceptually and in practice. Many legislators who hold the latter view undoubtedly also have concluded that more general laws dealing with such contentious issues as access to health care and employment discrimination have little chance of passage.

In this article, after considering the arguments in favor of and opposed to genetic exceptionalism, I argue 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. But there are only limited conditions in which that decision is reasonable.

The Policy Framework

New developments in genetic technology have increased the capacity to identify the source of biological specimens, determine familial associations, and predict the future health status of individuals. New genetic information also has raised a variety of novel issues in such diverse fields as family law, employment law, insurance law, and criminal law. (6) In deciding on the legal response to this new information, policy-makers have three main options: (1) maintain the status quo; (2) enact comprehensive, "generic" restrictions on the collection, use, and disclosure of health information; and (3) enact provisions for the special treatment of genetic information--the preferred option to date in the United States.

If genetic-specific laws are to be successful, three conditions must be met: (1) the term "genetic" must be defined clearly, logically, and with scientific precision; (2) there must be an efficient, low-cost way to separate genetic information from nongenetic information in health records; and (3) it must not only be possible to treat genetic information differently from other health information, but there must be a compelling reason to do so.

Defining "genetic." From the standpoint of genetic privacy and genetic discrimination, genetic refers to predictive genetics. In determining the legal rights of individuals who are already affected with a physical or mental disorder, it is generally immaterial whether the disorder was caused by a germline mutation, a somatic mutation, environmental factors, a combination of factors, or something unknown. For example, there are two key issues in employment discrimination cases brought under the Americans with Disabilities Act (ADA): (1) Does the individual have a physical or mental impairment that constitutes a substantial limitation of a major life activity? and (2) Can the individual, with or without reasonable accommodation, perform the essential functions of the job safely and efficiently? …

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