Regulating the use of genetic information: perspectives from the U.S. experience
Pauline T. Kim · DigitalGeorgetown (Georgetown University Library) · 2010
This essay comments on an empirical study documenting the policies, practices, and attitudes of Australian employers regarding the use of genetic information from the U.S. perspective. The U.S. Congress recently enacted the Genetic Information Nondiscrimination Act of 2008 (GINA), which, among other things, prohibits employment discrimination on the basis of genetic information and restricts employers’ access to their employees’ genetic information. Just as the Australian study found no evidence of systematic use of genetic testing or screening by employers, GINA was passed in the absence of any evidence of widespread employment discrimination on the basis of genetic characteristics. Although it is too early to evaluate the effectiveness of GINA’s employment provisions in preventing genetic discrimination, an examination of the history and language of the statute offers some insights concerning the possibilities and challenges involved in regulating the use of genetic information in the workplace. This examination suggests that relying solely on an anti-discrimination framework is likely to be inadequate; the key to preventing misuse of genetic information by employers will be creating robust privacy protections. Fully restricting the flow of genetic information, however, poses a number of challenges for regulators.