Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Jul 15;13(1):115.
doi: 10.1186/s13073-021-00928-5.

An international policy on returning genomic research results

Anna C F Lewis  1   2   3 , Bartha Maria Knoppers  4 , Robert C Green  5   6   7   8
Affiliations

An international policy on returning genomic research results

Anna C F Lewis et al. Genome Med. .

Abstract

The Global Alliance for Genomics and Health has approved a policy for the return of clinically actionable genomic research results, the first such policy approved by an international body. The policy acknowledges the potential medical benefits to millions of individuals who are participating in genomics research. It ties the pace of implementation to each country's clinical standards, including for the return of secondary findings, and urges funders to set aside resources to support responsible return.

PubMed Disclaimer

Conflict of interest statement

ACFL owns equity in Fabric Genomics. RCG has received consulting fees from AIA, Genomic Life, Grail, OptumLabs, and Verily and is co-founder and advisor to Genome Medical. BMK declares that they have no competing interests.

References

    1. Thorogood A, Dalpé G, Knoppers BM. Return of individual genomic research results: are laws and policies keeping step? Eur J Hum Genet. 2019;27:535–546. doi: 10.1038/s41431-018-0311-3. - DOI - PMC - PubMed
    1. Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJM. Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet. 2011;27:41–47. doi: 10.1016/j.tig.2010.11.004. - DOI - PubMed
    1. Global Alliance for Genomics and Health. Policy on Clinically Actionable Genomic Research Results. https://www.ga4gh.org/wp-content/uploads/2021-Policy-on-Clinically-Actio... (2021). Accessed June 30th.
    1. Bledsoe MJ, et al. Return of research results from genomic biobanks: cost matters. Genet Med Off J. Am Coll Med. Genet. 2013;15:103–105. - PMC - PubMed
    1. Burke W, Evans BJ, Jarvik GP. Return of results: ethical and legal distinctions between research and clinical care. Am J Med Genet C Semin Med Genet. 2014;0:105–111. doi: 10.1002/ajmg.c.31393. - DOI - PMC - PubMed

MeSH terms

LinkOut - more resources