Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
Journal article, 2022
Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered.
Data donation
Genomics
Return of results
International
Attitudes
Author
Richard Milne
Engagement and Society
University of Cambridge
Katherine I. Morley
University of Melbourne
King's College London
RAND Corporation
Mohamed A. Almarri
Dubai eGovernment, Dubai Police
Wellcome Trust Sanger Institute
Jerome Atutornu
Engagement and Society
Elena E. Baranova
SPBMAPS
Paul Bevan
Wellcome Trust Sanger Institute
Maria Cerezo
European Bioinformatics Institute
Yali Cong
Peking University Health Science Center
Alessia Costa
Engagement and Society
Carolina Feijao
RAND Corporation
Cláudia de Freitas
University of Porto
Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR)
Josepine Fernow
Uppsala University
Peter Goodhand
Ontario Institute for Cancer Research
Qurratulain Hasan
SAAZ Genetics
Kamineni Hospital
Aiko Hibino
Hirosaki University
Gry Houeland
Uppsala University
Heidi Howard
Lund University
Chalmers, Biology and Biological Engineering, Industrial Biotechnology
Zakir Hussain Sheikh
SAAZ Genetics
Charlotta Ingvoldstad Malmgren
Karolinska Institutet
Institutionen för folkhälso- och vårdvetenskap
Vera L. Izhevskaya
Research Centre for Medical Genetics
Aleksandra Jędrzejak
Independent Scholar
Cao Jinhong
Wuhan University
Megumi Kimura
Hitotsubashi University
Erika Kleiderman
McGill University
Keying Liu
Osaka University
Peking University Health Science Center
Deborah Mascalzoni
Uppsala University
EURAC Research
Alvaro Mendes
Instituto de Biologia Molecular e Celular
Jusaku Minari
Uehiro Research Division for iPS Cell Ethics
Dianne Nicol
University of Tasmania
Emilia Niemiec
Lund University
Christine Patch
Queen Mary University of London
Engagement and Society
Barbara Prainsack
University of Vienna
King's College London
Marie Rivière
Universite de la Sorbonne Nouvelle Paris III
Lauren Robarts
Engagement and Society
Jonathan Roberts
Engagement and Society
Virginia Romano
Uppsala University
EURAC Research
Haytham A. Sheerah
Osaka University
James Smith
Wellcome Trust Sanger Institute
Alexandra Soulier
Uppsala University
Claire Steed
Wellcome Trust Sanger Institute
Vigdis Stefansdottir
Landspitali University Hospital
Cornelia Tandre
Uppsala University
Adrian Thorogood
McGill University
University of Luxembourg
Torsten H. Voigt
RWTH Aachen University
Nan Wang
Peking University Health Science Center
Go Yoshizawa
Arbeidsforskningsinstituttet
Anna Middleton
Engagement and Society
The Faculty of Education
Genetics in Medicine
1098-3600 (ISSN) 1530-0366 (eISSN)
Vol. 24 5 1120-1129Subject Categories (SSIF 2011)
Other Health Sciences
Economics
Public Health, Global Health, Social Medicine and Epidemiology
DOI
10.1016/j.gim.2022.01.002
PubMed
35125311