Views on genomic research result delivery methods and informed consent: a review
Danya F Vears, Joel T Minion, Stephanie J Roberts, James Cummings, Mavis Machirori, Madeleine J Murtagh
PERSONALIZED MEDICINE | FUTURE MEDICINE LTD | Published : 2021
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 impli..View full abstract
Awarded by Wellcome Trust (METADAC)
Awarded by EU Horizon 2020 programme (EUCAN-connect)
Awarded by Australian Government through the Medical Research Future Fund, as part of the Genomics Health Futures Mission
The authors are grateful for funding support from ESRC, MRC andWellcome Trust (METADAC, Grant agreements MR/N01104X/1, ES/S008349/1, MR/N01104X/2, 213422/Z/18/Z -J Cummings, JT Minion, M Machirori, MJ Murtagh, SJ Roberts) and the EU Horizon 2020 programme (EUCAN-connect, Grant agreement ID: 824989 -JT Minion, M Machirori, MJ Murtagh). DF Vears is a Postdoctoral Research Fellow of the Research Foundation -Flanders (FWO Vlaanderen) and acknowledges the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Program. This work was also supported by the Australian Government through the Medical Research Future Fund, as part of the Genomics Health Futures Mission (Grant number 76749). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.