Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives

American Journal of Bioethics 12 (10):1-8 (2012)
  Copy   BIBTEX

Abstract

Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for disclosing a select range of genetic results to the relatives of research participants who have died, developed in response to relatives? requests during a pilot study of large-scale medical genetic sequencing. We also argue that studies that disclose individual research results to participants should, at a minimum, passively disclose individual results to deceased participants? relatives

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 90,593

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

The Return of Results of Deceased Research Participants.Anne Marie Tassé - 2011 - Journal of Law, Medicine and Ethics 39 (4):621-630.
Familial Communication of Research Results: A Need to Know?Lee Black & Kelly A. McClellan - 2011 - Journal of Law, Medicine and Ethics 39 (4):605-613.

Analytics

Added to PP
2012-09-14

Downloads
37 (#374,850)

6 months
4 (#319,344)

Historical graph of downloads
How can I increase my downloads?

Author's Profile

Ben Chan
National Institutes of Health

References found in this work

Add more references