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

Lookup NU author(s): Dr Joel MinionORCiD, Dr Stephanie RobertsORCiD, Dr James Cummings, Professor Madeleine Murtagh

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Abstract

© 2021 Future Medicine LtdThere 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.

Publication metadata

Author(s): Vears DF, Minion JT, Roberts SJ, Cummings J, MacHirori M, Murtagh MJ

Publication type: Review

Publication status: Published

Journal: Personalized Medicine

Year: 2021

Volume: 18

Issue: 3

Pages: 295-310

Print publication date: 01/05/2021

Online publication date: 06/04/2021

Acceptance date: 02/03/2021

ISSN (print): 1741-0541

ISSN (electronic): 1744-828X

Publisher: Future Medicine Ltd.

URL: https://doi.org/10.2217/pme-2020-0139

DOI: 10.2217/pme-2020-0139

PubMed id: 33822658

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