Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
Genome Medicine, vol. 13, pp. 92
Abstract
BACKGROUND: Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. METHODS: We analyse 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, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. RESULTS: Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data-endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. CONCLUSIONS: Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.
Authors 48
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Richard Milne corresponding
University of Cambridge · Wellcome Connecting Science
Affiliation as printed
Department of Public Health and Primary Care, University of Cambridge, Cambridge, CB2 0SR, UK. rm23@sanger.ac.uk
Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK. rm23@sanger.ac.uk
Department of Public Health and Primary Care, University of Cambridge, Cambridge, CB2 0SR, UK
Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK
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The University of Melbourne · King's College London · RAND Europe
Affiliation as printed
Centre for Epidemiology and Biostatistics, Melbourne School of Global and Population Health, The University of Melbourne, Melbourne, 3010, Australia
Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, SE5 8AF, UK
RAND Europe, Cambridge, CB4 1YG, UK
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Affiliation as printed
Department of Forensic Science and Criminology, Dubai Police GHQ, Dubai, United Arab Emirates
Wellcome Sanger Institute, Cambridge, CB10 1SA, UK
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Affiliation as printed
Keynote IAS, New Delhi, 110060, India
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Affiliation as printed
Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK
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Russian Medical Academy of Continuous Professional Education
Affiliation as printed
Russian Medical Academy of Continuous Professional Education, Moscow, 119049, Russia
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European Bioinformatics Institute
Affiliation as printed
EMBL-EBI, Wellcome Genome Campus, Cambridge, CB10 1SA, UK
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Affiliation as printed
Medical Ethics Program, Peking University Health Science Center, Beijing, 100191, China
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Affiliation as printed
Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK
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University of Tasmania · Centre for Law and Genetics · Swinburne University of Technology
Affiliation as printed
Centre for Law and Genetics, University of Tasmania, Hobart, 7001, Australia
Department of Psychological Sciences, Swinburne University of Technology, Melbourne, 3122, Australia
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Affiliation as printed
Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden
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Ontario Institute for Cancer Research · MaRS
Affiliation as printed
Ontario Institute for Cancer Research, MaRS Centre, Toronto, M5G 0A3, Canada
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Saaz Genetics (India) · Kamineni Hospitals
Affiliation as printed
Department of Genetics & Molecular Medicine, Kamineni Hospitals, Hyderabad, 500 068, India
SAAZ Genetics, Hyderabad, 500033, India
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Affiliation as printed
Faculty of Humanities and Social Sciences, Hirosaki University, Hirosaki, 036-8560, Japan
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Affiliation as printed
Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden
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Affiliation as printed
Medical Ethics, Lund Universitet, Sölvegatan, 19, Lund, Sweden
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Uppsala University · Karolinska Institutet
Affiliation as printed
Department of Molecular Medicine and Surgery, Karolinska Institutet, 171 76, Solna, Sweden
Department of Public Health and Caring Scienec, Uppsala University, 751 22, Uppsala, Sweden
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Research Centre for Medical Genetics
Affiliation as printed
Research Centre for Medical Genetics, Moscow, 115522, Russia
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Affiliation as printed
Independent Scholar, Warsaw, Poland
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Affiliation as printed
Department of Epidemiology and Biostatistics, School of Health Sciences, Wuhan University, Wuhan, 430071, China
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Affiliation as printed
Institute of Innovation Research, Hitotsubashi University, Tokyo, 186-8603, Japan
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Affiliation as printed
Centre of Genomics and Policy, McGill University, Montreal, H3A 0G1, Canada
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Affiliation as printed
RAND Europe, Cambridge, CB4 1YG, UK
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Peking University · The University of Osaka
Affiliation as printed
Public Health, Department of Social Medicine, Osaka University Graduate School of Medicine, Osaka, 565-0871, Japan
School of Public Health, Peking University Health Science Center, Beijing, 100191, China
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Uppsala University · Eurac Research · Institute for Biomedicine
Affiliation as printed
Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden
EURAC, Institute of Biomedicine, 39100, Bolzano, Italy
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Universidade do Porto · i3S - Instituto de Investigação e Inovação em Saúde, Universidade do Porto · Instituto de Biologia Molecular e Celular
Affiliation as printed
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, 4200-135, Porto, Portugal
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, 4200-135, Porto, Portugal
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Kyoto University · Center for iPS Cell Research and Application, Kyoto University
Affiliation as printed
Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, 606-8507, Japan
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University of Tasmania · Centre for Law and Genetics
Affiliation as printed
Centre for Law and Genetics, University of Tasmania, Hobart, 7001, Australia
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Affiliation as printed
Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden
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Queen Mary University of London · Wellcome Connecting Science · Genomics England
Affiliation as printed
Genomics England, Queen Mary University of London, London, EC1M 6BQ, UK
Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK
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Affiliation as printed
RAND Europe, Cambridge, CB4 1YG, UK
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University of Vienna · King's College London
Affiliation as printed
Department of Global Health & Social Medicine, King's College London, London, WC2R 2LS, UK
Department of Political Science, University of Vienna, 1010, Vienna, Austria
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Université Sorbonne Nouvelle · DILTEC - Didactique des langues, des textes et des cultures
Affiliation as printed
DILTEC, Sorbonne Nouvelle, 75005, Paris, France
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Affiliation as printed
Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK
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Affiliation as printed
Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK
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Uppsala University · Eurac Research · Institute for Biomedicine
Affiliation as printed
Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden
EURAC, Institute of Biomedicine, 39100, Bolzano, Italy
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Affiliation as printed
Public Health, Department of Social Medicine, Osaka University Graduate School of Medicine, Osaka, 565-0871, Japan
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Affiliation as printed
Wellcome Sanger Institute, Cambridge, CB10 1SA, UK
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Affiliation as printed
Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden
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Affiliation as printed
Wellcome Sanger Institute, Cambridge, CB10 1SA, UK
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National University Hospital of Iceland
Affiliation as printed
Landspitali, the National University Hospital of Iceland, 101, Reykjavík, Iceland
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Affiliation as printed
Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden
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Affiliation as printed
Centre of Genomics and Policy, McGill University, Montreal, H3A 0G1, Canada
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Affiliation as printed
Institute of Sociology, RWTH Aachen University, 52062, Aachen, Germany
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Affiliation as printed
Medical Ethics Program, Peking University Health Science Center, Beijing, 100191, China
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Indiana University Bloomington · Indiana University
Affiliation as printed
Indiana University Maurer School of Law, Bloomington, 47405, USA
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OsloMet – Oslo Metropolitan University
Affiliation as printed
Work Research Institute (AFI), Oslo Metropolitan University, 0130, Oslo, Norway
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University of Cambridge · Wellcome Connecting Science
Affiliation as printed
Faculty of Education, University of Cambridge, Cambridge, CB2 8PQ, UK
Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK
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