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Lookup NU author(s): Dr Joel MinionORCiD,
Dr Stephanie RobertsORCiD,
Dr James Cummings,
Professor Madeleine Murtagh
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© 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.
Author(s): Vears DF, Minion JT, Roberts SJ, Cummings J, MacHirori M, Murtagh MJ
Publication type: Review
Publication status: Published
Journal: Personalized Medicine
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.
PubMed id: 33822658