Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries.


Journal

Genetics in medicine : official journal of the American College of Medical Genetics
ISSN: 1530-0366
Titre abrégé: Genet Med
Pays: United States
ID NLM: 9815831

Informations de publication

Date de publication:
05 2022
Historique:
received: 20 09 2021
revised: 23 12 2021
accepted: 03 01 2022
pubmed: 8 2 2022
medline: 11 5 2022
entrez: 7 2 2022
Statut: ppublish

Résumé

The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. 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. 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. 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.

Identifiants

pubmed: 35125311
pii: S1098-3600(22)00002-8
doi: 10.1016/j.gim.2022.01.002
pii:
doi:

Substances chimiques

DNA 9007-49-2

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1120-1129

Informations de copyright

Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.

Déclaration de conflit d'intérêts

Conflict of Interest The authors declare no conflicts of interest.

Auteurs

Richard Milne (R)

Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom; Cambridge Public Health, University of Cambridge, Cambridge, United Kingdom. Electronic address: rm23@sanger.ac.uk.

Katherine I Morley (KI)

RAND Europe, Cambridge, United Kingdom; Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom; Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia.

Mohamed A Almarri (MA)

Wellcome Sanger Institute, Cambridge, United Kingdom; Department of Forensic Science and Criminology, Dubai Police GHQ, Dubai, United Arab Emirates.

Jerome Atutornu (J)

Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom.

Elena E Baranova (EE)

Russian Medical Academy of Continuous Professional Education, Moscow, Russia.

Paul Bevan (P)

Wellcome Sanger Institute, Cambridge, United Kingdom.

Maria Cerezo (M)

EMBL-EBI, Wellcome Genome Campus, Cambridge, United Kingdom.

Yali Cong (Y)

Medical Ethics Program, Peking University Health Science Center, Beijing, China.

Alessia Costa (A)

Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom.

Carolina Feijao (C)

RAND Europe, Cambridge, United Kingdom.

Cláudia de Freitas (C)

EPIUnit - Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal; Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Porto, Portugal.

Josepine Fernow (J)

Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden.

Peter Goodhand (P)

Ontario Institute for Cancer Research, MaRS Centre, Toronto, Ontario, Canada.

Qurratulain Hasan (Q)

Department of Genetics and Molecular Medicine, Kamineni Hospitals, Hyderabad, India; SAAZ Genetics, Hyderabad, India.

Aiko Hibino (A)

Faculty of Humanities and Social Sciences, Hirosaki University, Hirosaki, Japan.

Gry Houeland (G)

Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden.

Heidi C Howard (HC)

Medical Ethics, Department of Clinical Sciences, Faculty of Medicine, Lund Universitet, Lund, Sweden; Division of Industrial Biotechnology, Department of Biology and Biological Engineering, Chalmers University of Technology, Gothenburg, Sweden.

Zakir Hussain Sheikh (Z)

SAAZ Genetics, Hyderabad, India.

Charlotta Ingvoldstad Malmgren (CI)

Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; Department of Molecular Medicine and Surgery, Karolinska Institutet, Solna, Sweden.

Vera L Izhevskaya (VL)

Research Centre for Medical Genetics, Moscow, Russia.

Aleksandra Jędrzejak (A)

Independent Scholar, Warsaw, Poland.

Cao Jinhong (C)

Department of Epidemiology and Biostatistics, School of Health Sciences, Wuhan University, Wuhan, China.

Megumi Kimura (M)

Institute of Innovation Research, Hitotsubashi University, Tokyo, Japan.

Erika Kleiderman (E)

Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada.

Keying Liu (K)

Public Health, Department of Social Medicine, Graduate School of Medicine, Faculty of Medicine, Osaka University, Osaka, Japan; School of Public Health, Peking University Health Science Center, Beijing, China.

Deborah Mascalzoni (D)

Institute for Biomedicine, Eurac Research, Affiliated Institute of the University of Lübeck, Bolzano, Italy; Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden.

Álvaro Mendes (Á)

UnIGENe and CGPP-Centre for Predictive and Preventive Genetics, IBMC-Institute for Molecular and Cell Biology, i3S-Instituto de Investigação e Inovação em Saúde, Universidade do Porto, Porto, Portugal.

Jusaku Minari (J)

Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, Japan.

Dianne Nicol (D)

Centre for Law and Genetics, University of Tasmania, Hobart, Tasmania, Australia.

Emilia Niemiec (E)

Medical Ethics, Department of Clinical Sciences, Faculty of Medicine, Lund Universitet, Lund, Sweden.

Christine Patch (C)

Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom; Genomics England, Queen Mary University of London, London, United Kingdom.

Barbara Prainsack (B)

Department of Political Science, University of Vienna, Vienna, Austria; Department of Global Health & Social Medicine, School of Global Affairs, King's College London, London, United Kingdom.

Marie Rivière (M)

DILTEC, Sorbonne Nouvelle, Paris, France.

Lauren Robarts (L)

Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom.

Jonathan Roberts (J)

Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom.

Virginia Romano (V)

Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden; Institute for Biomedicine, Eurac Research, Affiliated Institute of the University of Lübeck, Bolzano, Italy.

Haytham A Sheerah (HA)

Public Health, Department of Social Medicine, Graduate School of Medicine, Faculty of Medicine, Osaka University, Osaka, Japan.

James Smith (J)

Wellcome Sanger Institute, Cambridge, United Kingdom.

Alexandra Soulier (A)

Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden.

Claire Steed (C)

Wellcome Sanger Institute, Cambridge, United Kingdom.

Vigdis Stefànsdóttir (V)

Landspitali, The National University Hospital of Iceland, Reykjavík, Iceland.

Cornelia Tandre (C)

Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden.

Adrian Thorogood (A)

Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada; ELIXIR-LU and Bioinformatics Core, Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-sur-Alzette, Luxembourg.

Torsten H Voigt (TH)

Institute of Sociology, RWTH Aachen University, Aachen, Germany.

Nan Wang (N)

Medical Ethics Program, Peking University Health Science Center, Beijing, China.

Go Yoshizawa (G)

Work Research Institute (AFI), Oslo Metropolitan University, Oslo, Norway.

Anna Middleton (A)

Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom; The Faculty of Education, University of Cambridge, Cambridge, United Kingdom.

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Classifications MeSH