33 Pages Posted: 16 Mar 2007
In this article, we discuss current legal restrictions governing the use of race in medical research; in particular, we focus on the whether the use of race in various types of research is presently permitted under federal law and the federal constitution. We also discuss whether federal restrictions on the use of race in research ought to be expanded, and whether federal policies that encourage the use of race ought to be abandoned.
We conclude that information about ancestry and social and environmental influences should always be preferred to race in research and that information about ancestry and social and environmental influences should be collected instead of race whenever possible. Race may be nonetheless tolerated as a proxy for ancestry or social and environmental factors when racial data is all that is available (as is often the case in epidemiological studies) and social causes are the primary variable of interest. We would not bar race-based research, though, except in clinical trials, where we believe that current law already bars the use of race.
Government authorization and funding raises significantly different concerns, though, than government simply prohibiting the research in question, and we would bar both government authorization of race-based clinical trials and government funding of studies in which race is the variable of interest, except when a compelling interest can be identified (such as testing for alleles for diseases known to occur disparately in different races) and researchers can show why they need to use race instead of using genetic markers.
Keywords: Race, Medcial Research, Genetics, Clinical Trials
JEL Classification: I10
Suggested Citation: Suggested Citation
Lillquist, Erik and Sullivan, Charles A., Legal Regulation of the Use of Race in Medical Research. Journal of Law, Medicine & Ethics, Vol. 34, pp. 535-551, 2006; Seton Hall Public Law Research Paper No. 970683. Available at SSRN: https://ssrn.com/abstract=970683