Returning Results to Family Members: Professional Duties in Genomics Research in the United States
Journal of Legal Medicine, Forthcoming
20 Pages Posted: 12 Feb 2018 Last revised: 15 Feb 2018
Date Written: February 1, 2018
This article critically appraises the ethical and legal duties to disclose findings to the family members of research participants. These family members stand to benefit in important ways from discoveries that can inform their own health and reproductive risks. However, careful appreciation of how medical research differs from clinical practice and of the uncertainties at stake in genomic research complicates any warning to relatives. Research laboratories should generally be immune from liability for failing to diagnose or disclose a genetic disorder in time to prevent adverse outcomes for a participant’s family members or to return properly interpreted test results for even direct findings under investigation, let alone incidental ones. The only exception is where warning relatives of medical risks is very likely to prevent imminent harm and would not override known participant wishes. Genomic autopsy studies for sudden death satisfy these conditions of life-saving potential for relatives without disrespect to subjects. These are among the rare instances in which we conclude that offering results to family members is not just permissible but obligatory, not just as a moral matter but as a legal one.
Keywords: duties to warn, genomic medicine and research, health risks and uncertainties
JEL Classification: I18, K13, K32, K41
Suggested Citation: Suggested Citation