Disclosure of genetic information obtained through research

Kimberly A. Quaid, Nenette M. Jessup, Eric M. Meslin

Research output: Contribution to journalReview article

26 Scopus citations

Abstract

The rapid expansion of information and knowledge of genetics has implications for the question of whether, and under what circumstances, information discovered in the course of genetic research should be conveyed to research participants and/or their relatives. The aim of this paper is to propose an ethically defensible solution to a specific case example illustrating this problem. To do this we reviewed the literature to find answers to the following three questions: (1) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to research participants? (2) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to the relatives of research subjects? and (3) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research about former research participants who are now deceased? Our conclusion is that current U.S. federal guidelines governing the use of human subjects in research, as well as much of the current literature, do not adequately address the familial dimension inherent in genetic research, are virtually silent on the issue of sharing information of relevance to family members, and do not protect the deceased. It is our belief that this omission needs to be corrected and that explicit guidance on this issue needs to be provided to institutional review boards and researchers alike.

Original languageEnglish (US)
Pages (from-to)347-355
Number of pages9
JournalGenetic Testing
Volume8
Issue number3
DOIs
StatePublished - Jan 1 2004

ASJC Scopus subject areas

  • Genetics(clinical)

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