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

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

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