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Undesirable Implications of Disclosing Individual Genetic Results to Research Participants

American Journal of Bioethics, Vol. 6, No. 6, 28-30, 2006

U of Maryland Legal Studies Research Paper No. 2010-4

5 Pages Posted: 1 Jul 2009 Last revised: 9 Feb 2014

Leslie Meltzer Henry

University of Maryland Francis King Carey School of Law; Johns Hopkins Berman Institute of Bioethics

Date Written: 2006

Abstract

The bioethics and legal community are divided over whether investigators who conduct biomedical research are ethically and/or legally obligated to disclose incidental genetic findings to research participants. This paper argues that the justification for disclosure rests on the mistaken view that principles of beneficence, respect, reciprocity, and/or justice require researchers to offer participants individual genetic results. Whereas these principles and others obligate physicians to share individually relevant results with patients with whom they share a fiduciary relationship in the clinical care setting, they do not similarly obligate investigators to share such information with participants in the research setting. Furthermore, proposals to disclose incidental findings that are non-life threatening conflate the aims of clinical research with those of clinical care. Consequently, participants may suffer from a therapeutic or diagnostic misconception, researchers may be inclined to overstate the benefits of enrollment, and institutional review boards (IRBs) may face unforeseen difficulties in assessing trial risks and benefits.

Keywords: bioethics, genetics, research, disclosure, trial, institutional review, fiduciary

JEL Classification: I10, I18, I19

Suggested Citation

Henry, Leslie Meltzer, Undesirable Implications of Disclosing Individual Genetic Results to Research Participants (2006). American Journal of Bioethics, Vol. 6, No. 6, 28-30, 2006 ; U of Maryland Legal Studies Research Paper No. 2010-4. Available at SSRN: https://ssrn.com/abstract=1428423

Leslie Henry (Contact Author)

University of Maryland Francis King Carey School of Law ( email )

500 West Baltimore Street
Baltimore, MD 21201-1786
United States
410-706-4480 (Phone)

HOME PAGE: http://www.law.umaryland.edu/faculty/profiles/faculty.html?facultynum=616

Johns Hopkins Berman Institute of Bioethics ( email )

United States

HOME PAGE: http://www.bioethicsinstitute.org/people/leslie-meltzer-henry

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