International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access

Rebecca Branum; Susan M Wolf

doi:10.1111/jlme.12301

International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access

J Law Med Ethics. 2015 Fall;43(3):576-93. doi: 10.1111/jlme.12301.

Authors

Rebecca Branum¹, Susan M Wolf²

Affiliations

¹ Policy director at the Minnesota State College Student Association and previously served as a Research Associate at the University of Minnesota's Consortium on Law and Values in Health, Environment & the Life Sciences.
² McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; Faculty member, Center for Bioethics; and Chair, Consortium on Law and Values in Health, Environment & the Life Sciences at the University of Minnesota. She is one of three Principal Investigators on NIH/NCI/NHGRI grant 1-R01-CA154517 on return of genomic results to family members, including after the death of the proband.

Abstract

Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Access to Information / legislation & jurisprudence*
Family*
Genetic Privacy / legislation & jurisprudence*
Genetic Research / legislation & jurisprudence*
Genomics / legislation & jurisprudence*
Health Policy / legislation & jurisprudence*
Humans
Internationality*
United States

Abstract

Publication types

MeSH terms

Grants and funding