Posted: 28 May 2002
Date Written: May 17, 2002
Recent successes in mapping the human genome have raised both hopes for medical breakthroughs and fears of the misuse of genetic information. Motivated by the specter of a "genetic underclass," advocates and policy makers have called for legal protections, including a ban on genetic discrimination in employment analogous to existing prohibitions on race and sex discrimination. This Article argues that although the analogy to race and other traditionally forbidden forms of discrimination is appealing, genetic discrimination differs in critical ways. Unlike race or sex, disease-linked genetic traits are not readily observable, socially salient characteristics, nor have they historically been the basis for stigmatizing or marginalizing identifiable groups of people. And unlike race or sex, genetic information may be relevant to predicting an employee's future job performance. In addition, the anti-discrimination model may be ineffective in preventing employer use of genetic information because of its focus on employer intent. Proving discriminatory intent is difficult and costly, and typically requires the use of comparative evidence to build a circumstantial case. In the case of genetic discrimination, building such a case would often require discovering or revealing the genetic status of other employees, thus, ironically, increasing the availability and salience of genetic information. This Article argues for an alternative approach. It asserts that employer use of genetic information primarily threatens the value of individual autonomy, and that a privacy rights paradigm therefore offers a more appropriate model for addressing these concerns. Such a perspective is more consistent with the nature of genetic data, which is highly individual, not easily observed, and can reveal traditionally private facts, such as information about medical risks and intimate family relationships. Developing an effective set of privacy protections for employees will involve certain practical challenges and difficulties. However, sustained attention to these challenges is more likely to produce policies capable of truly protecting employees from the misuse of their genetic information than falling back on a familiar, but ill-fitting civil rights model that requires proof of employer motivation.
Suggested Citation: Suggested Citation
Kim, Pauline T., Genetic Discrimination, Genetic Privacy: Rethinking Employee Protections for a Brave New Workplace (May 17, 2002). Northwestern University Law Review, Vol. 96, No. 4, 2002. Available at SSRN: https://ssrn.com/abstract=312641