Engaging Racial and Ethnic Groups in the Regulation of Research: Lessons from Research in Emergency Settings

34 Pages Posted: 22 Aug 2011 Last revised: 6 Feb 2014

Lisa Eckstein

Georgetown University Law Center

Date Written: August 22, 2011

Abstract

The rapid growth of gene sequence repositories - almost all of which collect and retain participants’ racial and ethnic affiliations - reinvigorates debates about the need to protect groups from research-related harms. Successful implementation of such a strategy likely will require researchers to engage with potentially affected groups prior to commencing research. To date, research in emergency settings (RES) provides the only experience of community engagement requirements in the context of medical research. I assess law reform options that have been proposed in the RES context, before considering the potential for such reforms to improve the effectiveness of policies requiring researchers to engage with racial and ethnic group members prior to commencing research.

Keywords: Genetics, research ethics, emergency research, Institutional Review Boards, community engagement

Suggested Citation

Eckstein, Lisa, Engaging Racial and Ethnic Groups in the Regulation of Research: Lessons from Research in Emergency Settings (August 22, 2011). Houston Journal of Health Law and Policy, Vol. 12, 2012. Available at SSRN: https://ssrn.com/abstract=1914411

Lisa Eckstein (Contact Author)

Georgetown University Law Center ( email )

600 New Jersey Avenue, NW
Washington, DC 20001
United States

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