Open AccessViews on genomic research result delivery methods and informed consent: a review
Author(s) -
Danya F. Vears,
Joel Minion,
Stephanie Roberts,
James Cummings,
Mavis Machirori,
Madeleine J. Murtagh
Publication year - 2021
Publication title -
personalized medicine
Language(s) - English
Resource type - Journals
eISSN - 1744-828X
pISSN - 1741-0541
DOI - 10.2217/pme-2020-0139
Subject(s) - informed consent , context (archaeology) , stakeholder , empirical research , medicine , psychology , internet privacy , medical education , public relations , alternative medicine , computer science , political science , pathology , paleontology , philosophy , epistemology , biology
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.