Social Policy

The power of the fear of genetic discrimination to direct behavior is central to debates regarding the need for curbs on such discrimination through social policy (Greely). The degree of restriction is often related to the degree of harm threatening economic and other values. In the United Kingdom, the strong relationship between life insurance, home ownership, and the effect of perceptions of danger on the national economy prompted a national investigation (Cook). At least partially to avoid more restrictive measures, the British life insurance industry declared a voluntary, qualified moratorium on policies. Some have suggested that industry self-restraint is preferable to overreaching or imprecise legislation (Nowlan). Critics contend that industry self-restraint can not serve as a sufficient deterrent to actions that could otherwise yield economic benefit.

Legislation plays a relatively more prominent role in policies regulating genetic discrimination in the United States. Absent a single, uniform statute at the federal level, the laws of individual states address genetic discrimination. The actions of employers and other entities are also subject to provisions within federal statutes that regulate the workplace and the marketplace (Pagnattaro). Legislation passed in the 1990s regulates the dissemination of medical records that could contain the results of genetic tests (HIPAA). Such regulation reflects the heightened value afforded privacy and confidentiality, particularly within the United States, in an era of advanced medical and informational technology.

Several scholars have criticized the use of legislation prohibiting genetic discrimination as premature and unnecessary government interference in a free market system (Epstein). Citing flaws in the legislative approaches to discrimination in other contexts, these scholars question the fairness of protecting the concealment of information that may have legitimate value. Others emphasize the absence of evidence of genetic discrimination by health or life insurance companies (Nowlan). To enact legislation on the basis of a problem that exists primarily through anecdotes, critics argue, is to validate fears that are unsubstantiated (Nowlan).

Still others praise legislation prohibiting genetic discrimination as an effective means of allaying the fears of the public (Greely). Legislation is a vehicle for establishing a shared consensus on the values underlying the matter. The cost of "symbolic" legislation, however, remains a matter for debate (Hellman).

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