An international policy on returning genomic research results

Author:

Lewis Anna C. F.ORCID,Knoppers Bartha Maria,Green Robert C.

Abstract

AbstractThe 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.

Publisher

Springer Science and Business Media LLC

Subject

Genetics (clinical),Genetics,Molecular Biology,Molecular Medicine

Reference10 articles.

1. Thorogood A, Dalpé G, Knoppers BM. Return of individual genomic research results: are laws and policies keeping step? Eur J Hum Genet. 2019;27:535–46.

2. 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;27:41–7.

3. Global Alliance for Genomics and Health. Policy on Clinically Actionable Genomic Research Results. https://www.ga4gh.org/wp-content/uploads/2021-Policy-on-Clinically-Actionable-Genomic-Research-Results.pdf (2021). Accessed June 30th.

4. Bledsoe MJ, et al. Return of research results from genomic biobanks: cost matters. Genet Med Off J. Am Coll Med. Genet. 2013;15:103–5.

5. 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;0:105–11.

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