Richard Milne1, Katherine I Morley2, Mohamed A Almarri3, Jerome Atutornu4, Elena E Baranova5, Paul Bevan6, Maria Cerezo7, Yali Cong8, Alessia Costa4, Carolina Feijao9, Cláudia de Freitas10, Josepine Fernow11, Peter Goodhand12, Qurratulain Hasan13, Aiko Hibino14, Gry Houeland11, Heidi C Howard15, Zakir Hussain Sheikh16, Charlotta Ingvoldstad Malmgren17, Vera L Izhevskaya18, Aleksandra Jędrzejak19, Cao Jinhong20, Megumi Kimura21, Erika Kleiderman22, Keying Liu23, Deborah Mascalzoni24, Álvaro Mendes25, Jusaku Minari26, Dianne Nicol27, Emilia Niemiec28, Christine Patch29, Barbara Prainsack30, Marie Rivière31, Lauren Robarts4, Jonathan Roberts4, Virginia Romano32, Haytham A Sheerah33, James Smith6, Alexandra Soulier11, Claire Steed6, Vigdis Stefànsdóttir34, Cornelia Tandre11, Adrian Thorogood35, Torsten H Voigt36, Nan Wang8, Go Yoshizawa37, Anna Middleton38. 1. 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. 2. 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. 3. Wellcome Sanger Institute, Cambridge, United Kingdom; Department of Forensic Science and Criminology, Dubai Police GHQ, Dubai, United Arab Emirates. 4. Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom. 5. Russian Medical Academy of Continuous Professional Education, Moscow, Russia. 6. Wellcome Sanger Institute, Cambridge, United Kingdom. 7. EMBL-EBI, Wellcome Genome Campus, Cambridge, United Kingdom. 8. Medical Ethics Program, Peking University Health Science Center, Beijing, China. 9. RAND Europe, Cambridge, United Kingdom. 10. EPIUnit - Instituto de Saúde Pública, Universidade do Porto, Porto, Portugal; Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Porto, Portugal. 11. Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden. 12. Ontario Institute for Cancer Research, MaRS Centre, Toronto, Ontario, Canada. 13. Department of Genetics and Molecular Medicine, Kamineni Hospitals, Hyderabad, India; SAAZ Genetics, Hyderabad, India. 14. Faculty of Humanities and Social Sciences, Hirosaki University, Hirosaki, Japan. 15. 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. 16. SAAZ Genetics, Hyderabad, India. 17. Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; Department of Molecular Medicine and Surgery, Karolinska Institutet, Solna, Sweden. 18. Research Centre for Medical Genetics, Moscow, Russia. 19. Independent Scholar, Warsaw, Poland. 20. Department of Epidemiology and Biostatistics, School of Health Sciences, Wuhan University, Wuhan, China. 21. Institute of Innovation Research, Hitotsubashi University, Tokyo, Japan. 22. Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada. 23. 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. 24. Institute for Biomedicine, Eurac Research, Affiliated Institute of the University of Lübeck, Bolzano, Italy; Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden. 25. 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. 26. Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, Japan. 27. Centre for Law and Genetics, University of Tasmania, Hobart, Tasmania, Australia. 28. Medical Ethics, Department of Clinical Sciences, Faculty of Medicine, Lund Universitet, Lund, Sweden. 29. Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom; Genomics England, Queen Mary University of London, London, United Kingdom. 30. 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. 31. DILTEC, Sorbonne Nouvelle, Paris, France. 32. Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden; Institute for Biomedicine, Eurac Research, Affiliated Institute of the University of Lübeck, Bolzano, Italy. 33. Public Health, Department of Social Medicine, Graduate School of Medicine, Faculty of Medicine, Osaka University, Osaka, Japan. 34. Landspitali, The National University Hospital of Iceland, Reykjavík, Iceland. 35. 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. 36. Institute of Sociology, RWTH Aachen University, Aachen, Germany. 37. Work Research Institute (AFI), Oslo Metropolitan University, Oslo, Norway. 38. Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom; The Faculty of Education, University of Cambridge, Cambridge, United Kingdom.
Abstract
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.
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.
Authors: Mariana Amorim; Susana Silva; Helena Machado; Elisa Leão Teles; Maria João Baptista; Tiago Maia; Ngozi Nwebonyi; Cláudia de Freitas Journal: Int J Environ Res Public Health Date: 2022-07-19 Impact factor: 4.614