Protecting Genetic Difference

This article surveys current legislation related to genetic privacy and discrimination, including Federal and State laws that prohibit, or could be used to prohibit, genetic discrimination in employment and insurance, and laws that protect genetic privacy. The relationship between protecting genetic privacy and prohibiting genetic discrimination is discussed. In part II of the article, the author discusses impediments to the creation of effective legislation to combat genetic discrimination. These include: (1) the difficulty of defining "genetic information," given the variety of information with genetic significance; and (2) the limited usefulness of laws narrowly focused on prohibiting genetic discrimination and the possibility of perverse results from such measures. Finally, the article addresses whether a property right in genetic data is needed to address the issue of genetic privacy. The author concludes that, unlike the case where a person's biological materials are used to develop a commercial product, intangible genetic data probably would not generate sufficient value to warrant the cost of enforcement by those affected. As the author explains, "the goal of protecting genetic information is not to preserve any value of the information, but to control its use and disclosure. For this purpose, requiring informed consent is probably sufficient, and the disincentive of potential recovery for conversion of the property is unnecessary." © 1998 Michael S. Yesley t Staff Attorney, Los Alamos National Laboratory. A.B. 1960, J.D. 1963, Harvard. Coordinator of the U.S. Department of Energy Program on the Ethical, Legal, and Social Implications of the Human Genome Project, 1990-1995. The views are the author's. BERKELEY TECHNOLOGY LAW JOURNAL