Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.

Autor: Milne R; 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. rm23@sanger.ac.uk., Morley KI; RAND Europe, Cambridge, CB4 1YG, UK.; Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, SE5 8AF, UK.; Centre for Epidemiology and Biostatistics, Melbourne School of Global and Population Health, The University of Melbourne, Melbourne, 3010, Australia., Almarri MA; Wellcome Sanger Institute, Cambridge, CB10 1SA, UK.; Department of Forensic Science and Criminology, Dubai Police GHQ, Dubai, United Arab Emirates., Anwer S; Keynote IAS, New Delhi, 110060, India., Atutornu J; Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK., Baranova EE; Russian Medical Academy of Continuous Professional Education, Moscow, 119049, Russia., Bevan P; Wellcome Sanger Institute, Cambridge, CB10 1SA, UK., Cerezo M; EMBL-EBI, Wellcome Genome Campus, Cambridge, CB10 1SA, UK., Cong Y; Medical Ethics Program, Peking University Health Science Center, Beijing, 100191, China., Costa A; Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK., Critchley C; Department of Psychological Sciences, Swinburne University of Technology, Melbourne, 3122, Australia.; Centre for Law and Genetics, University of Tasmania, Hobart, 7001, Australia., Fernow J; Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden., Goodhand P; Ontario Institute for Cancer Research, MaRS Centre, Toronto, M5G 0A3, Canada., Hasan Q; Department of Genetics & Molecular Medicine, Kamineni Hospitals, Hyderabad, 500 068, India.; SAAZ Genetics, Hyderabad, 500033, India., Hibino A; Faculty of Humanities and Social Sciences, Hirosaki University, Hirosaki, 036-8560, Japan., Houeland G; Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden., Howard HC; Medical Ethics, Lund Universitet, Sölvegatan, 19, Lund, Sweden., Hussain SZ; SAAZ Genetics, Hyderabad, 500033, India., Malmgren CI; Department of Public Health and Caring Scienec, Uppsala University, 751 22, Uppsala, Sweden.; Department of Molecular Medicine and Surgery, Karolinska Institutet, 171 76, Solna, Sweden., Izhevskaya VL; Research Centre for Medical Genetics, Moscow, 115522, Russia., Jędrzejak A; Independent Scholar, Warsaw, Poland., Jinhong C; Department of Epidemiology and Biostatistics, School of Health Sciences, Wuhan University, Wuhan, 430071, China., Kimura M; Institute of Innovation Research, Hitotsubashi University, Tokyo, 186-8603, Japan., Kleiderman E; Centre of Genomics and Policy, McGill University, Montreal, H3A 0G1, Canada., Leach B; RAND Europe, Cambridge, CB4 1YG, UK., Liu K; 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., Mascalzoni D; Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden.; EURAC, Institute of Biomedicine, 39100, Bolzano, Italy., 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, 4200-135, Porto, Portugal., Minari J; Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, 606-8507, Japan., Nicol D; Centre for Law and Genetics, University of Tasmania, Hobart, 7001, Australia., Niemiec E; Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden., Patch C; Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK.; Genomics England, Queen Mary University of London, London, EC1M 6BQ, UK., Pollard J; RAND Europe, Cambridge, CB4 1YG, UK., Prainsack B; Department of Political Science, University of Vienna, 1010, Vienna, Austria.; Department of Global Health & Social Medicine, King's College London, London, WC2R 2LS, UK., Rivière M; DILTEC, Sorbonne Nouvelle, 75005, Paris, France., Robarts L; Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK., Roberts J; Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK., Romano V; Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden.; EURAC, Institute of Biomedicine, 39100, Bolzano, Italy., Sheerah HA; Public Health, Department of Social Medicine, Osaka University Graduate School of Medicine, Osaka, 565-0871, Japan., Smith J; Wellcome Sanger Institute, Cambridge, CB10 1SA, UK., Soulier A; Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden., Steed C; Wellcome Sanger Institute, Cambridge, CB10 1SA, UK., Stefànsdóttir V; Landspitali, the National University Hospital of Iceland, 101, Reykjavík, Iceland., Tandre C; Centre for Research Ethics & Bioethics (CRB), Uppsala University, SE-751 22, Uppsala, Sweden., Thorogood A; Centre of Genomics and Policy, McGill University, Montreal, H3A 0G1, Canada., Voigt TH; Institute of Sociology, RWTH Aachen University, 52062, Aachen, Germany., Wang N; Medical Ethics Program, Peking University Health Science Center, Beijing, 100191, China., West AV; Indiana University Maurer School of Law, Bloomington, 47405, USA., Yoshizawa G; Work Research Institute (AFI), Oslo Metropolitan University, 0130, Oslo, Norway., Middleton A; Society and Ethics Research Group, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, CB10 1SA, UK.; Faculty of Education, University of Cambridge, Cambridge, CB2 8PQ, UK.
Jazyk: angličtina
Zdroj: Genome medicine [Genome Med] 2021 May 25; Vol. 13 (1), pp. 92. Date of Electronic Publication: 2021 May 25.
DOI: 10.1186/s13073-021-00903-0
Abstrakt: 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.
Databáze: MEDLINE
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