What is Genetic Discrimination and When and How Can it Be Prevented?

Abstract

The public policy debate concerning the desirability and scope of legislation prohibiting discrimination has become increasingly volatile. Last year, a provocative opinion piece urging citizens to "gather courage to discriminate genetically" was widely syndicated. Another commentator suggested that genetic discrimination is "both rational and inevitable." On the other hand some prominent genetic scientists and legislators as well as disease support groups, continue to make passage of laws with strong protections for affected individuals one of their top priorities. Genetic researchers and clinicians need to recognize the unarticulated assumptions about discrimination that shape the debate and understand the underlying tensions between differing accounts of justice and fairness. In this article, we explore some of the nuances of the term discrimination and some of the sources of disagreement, before asking when and how genetic discrimination can be prevented.

Keywords: Institutional Review Boards, IRBs, research, biobank, research ethics, ethics, consent, HIPAAA privacy rule

JEL Classification: K31, K32