1. Views on genomic research result delivery methods and informed consent: a review
- Author
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Madeleine J. Murtagh, Mavis Machirori, James Cummings, Danya F. Vears, Stephanie J. Roberts, and Joel T. Minion
- Subjects
stakeholder perspectives ,Research Subjects ,Genomic research ,Research context ,Review ,Delivery methods ,Informed consent ,genomics ,Humans ,Pharmacology & Pharmacy ,Pharmacology ,Medical education ,Informed Consent ,Science & Technology ,individual research results ,Communication ,Research ,informed consent ,Stakeholder ,Genomics ,General Medicine ,return of results ,Molecular Medicine ,Literature study ,Psychology ,Return of results ,Life Sciences & Biomedicine - 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
- Published
- 2021
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