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A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings

42 Pages Posted: 14 Dec 2013 Last revised: 24 Oct 2015

Lisa Eckstein

Georgetown University Law Center

Jeremy R. Garrett

Children's Mercy Hospital

Benjamin E. Berkman

Georgetown University - The O'Neill Institute for National and Global Health Law

Date Written: December 13, 2013

Abstract

Whether researchers have an obligation to disclose secondary genetic research findings, and, if so, in what circumstances, remains a matter of heated debate. This paper suggests that much of this confusion is definitional or conceptual in nature. That is, there is significant variability in the way that threshold terms and concepts such as “incidental,” “analytic validity,” “clinical validity,” “clinical relevance,” “clinical utility,” “clinical significance,” and “actionability,” are used in the literature, which is impeding efforts to clarify the scope of an obligation to return findings. This paper analyzes the definitional muddle underlying the debate about returning genetic research findings, first, to explain the range of definitions being used in this debate. We go on to propose that, underlying all the seeming confusion and disagreement, three central and widely agreed upon concepts are at work in this debate — validity, value, and volition. Refocusing attention on these core concepts, and their appropriate conceptualizations, can produce a more productive debate regarding the return of genetic research findings.

Keywords: genetic research, incidental findings, research ethics

Suggested Citation

Eckstein, Lisa and Garrett, Jeremy R. and Berkman, Benjamin E., A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings (December 13, 2013). Journal of Law, Medicine and Ethics, Forthcoming. Available at SSRN: https://ssrn.com/abstract=2367291

Lisa Eckstein (Contact Author)

Georgetown University Law Center ( email )

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

Jeremy R. Garrett

Children's Mercy Hospital ( email )

2401 Gillham Rd
Kansas City, MO 64108
United States

Benjamin E. Berkman

Georgetown University - The O'Neill Institute for National and Global Health Law ( email )

600 New Jersey Avenue, NW
Washington, DC 20001
United States
202-662-9777 (Phone)

HOME PAGE: http://www.publichealthlaw.net

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