{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,9]],"date-time":"2026-06-09T07:49:12Z","timestamp":1780991352959,"version":"3.54.1"},"reference-count":61,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2022,1,1]],"date-time":"2022-01-01T00:00:00Z","timestamp":1640995200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001459","name":"Ministry of Education, Singapore","doi-asserted-by":"crossref","award":["MOE2017-SSRTG-028"],"award-info":[{"award-number":["MOE2017-SSRTG-028"]}],"id":[{"id":"10.13039\/501100001459","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100001350","name":"Ministry of Health, Singapore","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100001350","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Big Data &amp; Society"],"published-print":{"date-parts":[[2022,1]]},"abstract":"<jats:p>Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens\u2019 jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme.<\/jats:p>","DOI":"10.1177\/20539517221108988","type":"journal-article","created":{"date-parts":[[2022,6,29]],"date-time":"2022-06-29T01:28:13Z","timestamp":1656466093000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":15,"title":["Sharing precision medicine data with private industry: Outcomes of a citizens\u2019 jury in Singapore"],"prefix":"10.1177","volume":"9","author":[{"given":"Angela","family":"Ballantyne","sequence":"first","affiliation":[{"name":"Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore"},{"name":"Department of Primary Health Care and General Practice, University of Otago, Wellington, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7125-4206","authenticated-orcid":false,"given":"Tamra","family":"Lysaght","sequence":"additional","affiliation":[{"name":"Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4439-7850","authenticated-orcid":false,"given":"Hui Jin","family":"Toh","sequence":"additional","affiliation":[{"name":"Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3753-7990","authenticated-orcid":false,"given":"Serene","family":"Ong","sequence":"additional","affiliation":[{"name":"Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Lau","sequence":"additional","affiliation":[{"name":"Projective Insights Consultants, Singapore"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6915-6148","authenticated-orcid":false,"given":"G","family":"Owen Schaefer","sequence":"additional","affiliation":[{"name":"Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5104-9686","authenticated-orcid":false,"given":"Vicki","family":"Xafis","sequence":"additional","affiliation":[{"name":"Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2929-8966","authenticated-orcid":false,"given":"E Shyong","family":"Tai","sequence":"additional","affiliation":[{"name":"Division of Endocrinology, University Medicine Cluster, National University Hospital, Singapore"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3460-772X","authenticated-orcid":false,"given":"Ainsley J","family":"Newson","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney, Faculty of Medicine and Health, Sydney, NSW, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2617-8694","authenticated-orcid":false,"given":"Stacy","family":"Carter","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Engagement, Evidence and Values, School of Health and Society, University of Wollongong, Wollongong, New South Wales, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4279-3443","authenticated-orcid":false,"given":"Chris","family":"Degeling","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Engagement, Evidence and Values, School of Health and Society, University of Wollongong, Wollongong, New South Wales, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4427-0224","authenticated-orcid":false,"given":"Annette","family":"Braunack-Mayer","sequence":"additional","affiliation":[{"name":"Australian Centre for Health Engagement, Evidence and Values, School of Health and Society, University of Wollongong, Wollongong, New South Wales, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2022,6,28]]},"reference":[{"key":"bibr1-20539517221108988","unstructured":"Ai-Lien C, Koh F, Khalik S (2021) Data of 14,200 people with HIV leaked online by US fraudster who was deported from Singapore. Available at: https:\/\/www.straitstimes.com\/singapore\/data-of-14200-singapore-patients-with-hiv-leaked-online-by-american-fraudster-who-was (accessed November 11, 2021)."},{"key":"bibr2-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-016-0153-x"},{"key":"bibr3-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-021-00678-4"},{"key":"bibr4-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1093\/gigascience\/giy076"},{"key":"bibr5-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1177\/1049732316654870"},{"key":"bibr6-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2014-102374"},{"key":"bibr7-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1016\/j.nbt.2012.03.006"},{"key":"bibr8-20539517221108988","first-page":"20","volume":"12","author":"Cheah P","year":"2020","journal-title":"BMC Medical Ethics"},{"key":"bibr9-20539517221108988","volume-title":"Data Protection Law in Singapore: Privacy and Sovereignty in an Interconnected World","author":"Chesterman S","year":"2014"},{"key":"bibr10-20539517221108988","volume-title":"Handbuch Kommunitarismus","author":"Chua B","year":"2018"},{"key":"bibr11-20539517221108988","unstructured":"Cindy C (2021) Health Ministry to study if Integrated Shield Plan insurance can be made 'fully portable'. Available at: https:\/\/www.channelnewsasia.com\/singapore\/integrated-shield-plans-insurance-committee-fully-portable-1354091 (accessed November 11, 2021)."},{"key":"bibr12-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1177\/1073110519840479"},{"key":"bibr13-20539517221108988","unstructured":"Data Futures Partnership (2017) A Path to Social Licence: Guidelines for Trusted Data Use. Available at: https:\/\/www.aisp.upenn.edu\/wp-content\/uploads\/2019\/08\/Trusted-Data-Use_2017.pdf (accessed November 11, 2021)."},{"key":"bibr14-20539517221108988","doi-asserted-by":"publisher","DOI":"10.4135\/9781526421036827356"},{"key":"bibr15-20539517221108988","first-page":"21","volume":"31","author":"Degeling C","year":"2020","journal-title":"BMC Medical Ethics"},{"key":"bibr16-20539517221108988","unstructured":"Department of Health and Social Care (2018) The future of healthcare: our vision for digital, data and technology in health and care. 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Available at: https:\/\/www.brookings.edu\/articles\/social-policy-in-singapore-a-crucible-of-individual-responsibility\/ (accessed November 11, 2021)."},{"key":"bibr23-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-13-72"},{"key":"bibr24-20539517221108988","doi-asserted-by":"publisher","DOI":"10.17265\/2159-5313\/2016.09.003"},{"key":"bibr25-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2019-105651"},{"issue":"2","key":"bibr26-20539517221108988","first-page":"1","volume":"12","author":"Karpowitz CF","year":"2016","journal-title":"Journal of Public Deliberation"},{"key":"bibr27-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1093\/jmp\/jhv015"},{"key":"bibr28-20539517221108988","volume-title":"Routledge Handbook of Medical Law and Ethics","author":"Lemmens T","year":"2016","edition":"1"},{"key":"bibr29-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-020-00561-8"},{"key":"bibr30-20539517221108988","doi-asserted-by":"publisher","DOI":"10.3390\/jpm11090921"},{"key":"bibr31-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2014.143"},{"key":"bibr32-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1016\/j.dss.2018.02.007"},{"key":"bibr33-20539517221108988","unstructured":"Ministry of Health (2021a) Healthcare Schemes & Subsidies. 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Available at: https:\/\/ghr.nlm.nih.gov\/primer\/precisionmedicine\/initiative (accessed 10 November, 2021)."},{"key":"bibr37-20539517221108988","volume-title":"A Question of Trust: BBC Reith Lectures 2002","author":"O'Neill O","year":"2002"},{"key":"bibr38-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1007\/s11673-017-9806-9"},{"key":"bibr39-20539517221108988","unstructured":"PRECISE (2021) Precision Health Research, Singapore Available at: https:\/\/www.npm.sg\/ (accessed April 15, 2021)."},{"key":"bibr40-20539517221108988","unstructured":"PricewaterhouseCoopers (2019) Key lessons from the Public Report of the Committee of Inquiry (COI) on SingHealth cyber attack. Available at: https:\/\/www.pwc.com\/sg\/en\/risk-assurance\/assets\/coi-on-singhealth-cyber-attack-201901.pdf."},{"key":"bibr41-20539517221108988","volume-title":"Managing the Risks of Organizational Accidents","author":"Reason J","year":"1997","edition":"1"},{"issue":"12","key":"bibr42-20539517221108988","first-page":"ii28","volume":"13","author":"Reason J","year":"2004","journal-title":"Quality & Safety in Healthcare"},{"key":"bibr43-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1353\/pbm.0.0082"},{"key":"bibr44-20539517221108988","volume-title":"Precision Medicine in China","author":"Sanders S","year":"2016"},{"key":"bibr45-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2016.183"},{"key":"bibr46-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1007\/s41649-019-00094-2"},{"key":"bibr47-20539517221108988","author":"Sheehan M","year":"2020","journal-title":"Journal of Medical Ethics"},{"key":"bibr48-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9248.00250"},{"key":"bibr49-20539517221108988","doi-asserted-by":"publisher","DOI":"10.12688\/wellcomeopenres.13531.2"},{"key":"bibr50-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2014.03.005"},{"key":"bibr51-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13268"},{"key":"bibr52-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(21)00252-X"},{"key":"bibr53-20539517221108988","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(18)30003-5"},{"key":"bibr54-20539517221108988","first-page":"20","volume":"4","author":"Thomas R","year":"2016","journal-title":"Health Expectations"},{"issue":"3","key":"bibr55-20539517221108988","doi-asserted-by":"crossref","first-page":"e10200","DOI":"10.1002\/lrh2.10200","volume":"4","author":"Tully MP","year":"2019","journal-title":"Learning Healthcare System"},{"key":"bibr56-20539517221108988","unstructured":"UK Biobank (2007) UK Biobank Ethics and Governance Framework. 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Singapore Comparative Law Review 2020 (SCLR 2020) (accessed October 26, 2021)."}],"container-title":["Big Data &amp; Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/20539517221108988","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/20539517221108988","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/20539517221108988","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T12:58:36Z","timestamp":1777381116000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/20539517221108988"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,1]]},"references-count":61,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2022,1]]}},"alternative-id":["10.1177\/20539517221108988"],"URL":"https:\/\/doi.org\/10.1177\/20539517221108988","relation":{},"ISSN":["2053-9517","2053-9517"],"issn-type":[{"value":"2053-9517","type":"print"},{"value":"2053-9517","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,1]]},"article-number":"20539517221108988"}}