Understanding Incidental Findings in the Context of Genetics and Genomics
Journal of Law, Medicine and Ethics 36 (2):280-285 (2008)
Abstract
Human genetic and genomic research can yield information that may be of clinical relevance to the individuals who participate as subjects of the research. It has been common practice among researchers to notify participants during the informed consent process that no individual results will be disclosed, “incidental” or otherwise. However, as genetic information obtained in research becomes orders of magnitude more voluminous, increasingly accessible online, and more informative, this precedent may no longer be appropriate. There is not yet consensus on the responsibilities of researchers to disclose individual research results to research participants. Empirical research suggests that participants want to know individual research results. On the other hand, the increased resolution and power aforded by new genomic analyses may lead to fndings of statistical, but not necessarily clinical, signifcance. This paper addresses the issues to be considered in deciding whether and how to disclose “incidental” fndings or other fndings of clinical signifcance that arise in the course of human genomic and genetic research. What research results should be ofered, and what should not be ofered? For which research should individual results be ofered to research participants, when should they be ofered, how, and to whom?Author's Profile
DOI
10.1111/j.1748-720x.2008.00270.x
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Citations of this work
Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations.Susan M. Wolf, Frances P. Lawrenz, Charles A. Nelson, Jeffrey P. Kahn, Mildred K. Cho, Ellen Wright Clayton, Joel G. Fletcher, Michael K. Georgieff, Dale Hammerschmidt, Kathy Hudson, Judy Illes, Vivek Kapur, Moira A. Keane, Barbara A. Koenig, Bonnie S. LeRoy, Elizabeth G. McFarland, Jordan Paradise, Lisa S. Parker, Sharon F. Terry, Brian Van Ness & Benjamin S. Wilfond - 2008 - Journal of Law, Medicine and Ethics 36 (2):219-248.
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A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings.Lisa Eckstein, Jeremy R. Garrett & Benjamin E. Berkman - 2014 - Journal of Law, Medicine and Ethics 42 (2):190-207.
The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties.Susan M. Wolf, Jordan Paradise & Charlisse Caga-Anan - 2008 - Journal of Law, Medicine and Ethics 36 (2):361-383.
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References found in this work
Disclosing individual genetic results to research participants.Vardit Ravitsky & Benjamin S. Wilfond - 2006 - American Journal of Bioethics 6 (6):8 – 17.
Returning genetic research results to individuals: Points‐to‐consider.Gaile Renegar, Christopher J. Webster, Steffen Stuerzebecher, Lea Harty, Susan E. Ide, Beth Balkite, Taryn A. Rogalski‐Salter, Nadine Cohen, Brian B. Spear & Diane M. Barnes - 2006 - Bioethics 20 (1):24-36.