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Views on genomic research result delivery methods and informed consent: a review

Authors :
Madeleine J. Murtagh
Mavis Machirori
James Cummings
Danya F. Vears
Stephanie J. Roberts
Joel T. Minion
Source :
Personalized Medicine, Per Med
Publication Year :
2021
Publisher :
Future Medicine Ltd, 2021.

Abstract

There has been little discussion of the way genomic research results should be returned and how to obtain informed consent for this. We systematically searched the empirical literature, identifying 63 articles exploring stakeholder perspectives on processes for obtaining informed consent about return of results and/or result delivery. Participants, patients and members of the public generally felt they should choose which results are returned to them and how, ranging from direct (face-to-face, telephone) to indirect (letters, emails, web-based delivery) communication. Professionals identified inadequacies in result delivery processes in the research context. Our findings have important implications for ensuring participants are supported in deciding which results they wish to receive or, if no choice is offered, preparing them for potential research outcomes. ispartof: Personalized Medicine vol:18 issue:3 pages:295-310 ispartof: location:England status: Published online

Details

ISSN :
1744828X and 17410541
Volume :
18
Database :
OpenAIRE
Journal :
Personalized Medicine
Accession number :
edsair.doi.dedup.....5e6e27b976302f3a0f5c0bfe09415fd0
Full Text :
https://doi.org/10.2217/pme-2020-0139