Undesirable Implications of Disclosing Individual Genetic Results to Research Participants
Leslie Meltzer Henry
University of Maryland Francis King Carey School of Law; Johns Hopkins Berman Institute of Bioethics
American Journal of Bioethics, Vol. 6, No. 6, 28-30, 2006
U of Maryland Legal Studies Research Paper No. 2010-4
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.
Number of Pages in PDF File: 5
Keywords: bioethics, genetics, research, disclosure, trial, institutional review, fiduciary
JEL Classification: I10, I18, I19Accepted Paper Series
Date posted: July 1, 2009 ; Last revised: February 9, 2014
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