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Per Med. 2011 Nov;8(6):651-657.

You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative.

Author information

  • Duke University Institute for Genome Sciences & Policy, Durham, NC 27708, USA, Tel.: +1 919 684 2872, misha.angrist@duke.edu.

Abstract

The rapid emergence of whole-genome and whole-exome sequencing of research participants has helped to revive the debate about whether genetic and other 'omic' data should be returned to research participants, and if so, which data, under what circumstances and by whom. While partial disclosure of such data has been justified in cases where participants' lives and health are threatened, full disclosure appears to remain beyond the pale for most researchers and bioethicists. I argue that it should not be and that the objections to full disclosure short-sightedly favor near-term considerations over long-term benefits. Return of genomic data to those who want it, even if a difficult undertaking and even if the meaning of the data is unclear, engages participants in science and the research enterprise, and positions them to be better stewards of their own health and wellbeing.

PMID:
22199990
[PubMed]
PMCID:
PMC3243914
Free PMC Article
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