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

Published

Journal Article

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.

Full Text

Duke Authors

Cited Authors

  • Angrist, M

Published Date

  • November 2011

Published In

Volume / Issue

  • 8 / 6

Start / End Page

  • 651 - 657

PubMed ID

  • 22199990

Pubmed Central ID

  • 22199990

International Standard Serial Number (ISSN)

  • 1741-0541

Digital Object Identifier (DOI)

  • 10.2217/pme.11.62

Language

  • eng