{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T09:47:57Z","timestamp":1777456077400,"version":"3.51.4"},"reference-count":79,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2024,10,15]],"date-time":"2024-10-15T00:00:00Z","timestamp":1728950400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000077","name":"Division of Social and Economic Sciences","doi-asserted-by":"publisher","award":["2341622"],"award-info":[{"award-number":["2341622"]}],"id":[{"id":"10.13039\/100000077","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000923","name":"Australian Research Council","doi-asserted-by":"publisher","award":["DE220100417"],"award-info":[{"award-number":["DE220100417"]}],"id":[{"id":"10.13039\/501100000923","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Big Data &amp; Society"],"published-print":{"date-parts":[[2024,12]]},"abstract":"<jats:p>Recent reporting has revealed that the UK Biobank (UKB)\u2014a large, publicly-funded research database containing highly-sensitive health records of over half a million participants\u2014has shared its data with private insurance companies seeking to develop actuarial AI systems for analyzing risk and predicting health. While news reports have characterized this as a significant breach of public trust, the UKB contends that insurance research is \u201cin the public interest,\u201d and that all research participants are adequately protected from the possibility of insurance discrimination via data de-identification. Here, we contest both of these claims. Insurers use population data to identify novel categories of risk, which become fodder in the production of black-boxed actuarial algorithms. The deployment of these algorithms, as we argue, has the potential to increase inequality in health and decrease access to insurance. Importantly, these types of harms are not limited just to UKB participants: instead, they are likely to proliferate unevenly across various populations within global insurance markets via practices of profiling and sorting based on the synthesis of multiple data sources, alongside advances in data analysis capabilities, over space\/time. This necessitates a significantly expanded understanding of the publics who must be involved in biobank governance and data-sharing decisions involving insurers.<\/jats:p>","DOI":"10.1177\/20539517241290215","type":"journal-article","created":{"date-parts":[[2024,10,15]],"date-time":"2024-10-15T05:23:47Z","timestamp":1728969827000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":7,"title":["Asserting the public interest in health data: On the ethics of data governance for biobanks and insurers"],"prefix":"10.1177","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6529-1695","authenticated-orcid":false,"given":"Kathryne","family":"Metcalf","sequence":"first","affiliation":[{"name":"Department of Communication, University of California San Diego, La Jolla, CA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0324-708X","authenticated-orcid":false,"given":"Jathan","family":"Sadowski","sequence":"additional","affiliation":[{"name":"Emerging Technologies Research Lab, Faculty of Information Technology, Monash University, Melbourne, VIC, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2024,10,15]]},"reference":[{"key":"bibr1-20539517241290215","unstructured":"ABI\n                      (2023) Code on Genetic Testing and Insurance. Accessed 22 February 2024: https:\/\/www.abi.org.uk\/data-and-resources\/tools-and-resources\/genetics\/code-on-genetic-testing-and-insurance\/."},{"key":"bibr2-20539517241290215","unstructured":"Aguilar M (2023) For Parkinson\u2019s disease, advances spurred by Apple Watch offer a glimmer of hope.\n                      Stat News\n                      , 24 October. Accessed 9 February 2024: https:\/\/www.statnews.com\/2023\/10\/24\/apple-watch-parkinsons-disease-apps-parky-strivepd-neurorpm\/."},{"key":"bibr3-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1177\/2053951718816724"},{"key":"bibr4-20539517241290215","doi-asserted-by":"publisher","DOI":"10.3138\/9781442679382-014"},{"key":"bibr5-20539517241290215","first-page":"1","volume":"627","author":"Bick AG","year":"2024","journal-title":"Nature"},{"key":"bibr6-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1177\/0162243912442398"},{"issue":"5","key":"bibr7-20539517241290215","first-page":"1","volume":"38","author":"Born P","year":"2019","journal-title":"Journal of Insurance Regulation"},{"key":"bibr8-20539517241290215","unstructured":"British Medical Association (BMA)\n                      (2015) Secondary Uses of Healthcare Data Public Workshop Debrief. Available at: https:\/\/www.bma.org.uk\/collective-voice\/policy-and-research\/ethics\/secondary-uses-of-data\/public-workshop."},{"key":"bibr9-20539517241290215","unstructured":"Brunnermeier MK, Lamba R, Segura-Rodriguez C (2023) Inverse Selection.\n                      SSRN\n                      , 5 December. Accessed 1 February 2023: https:\/\/papers.ssrn.com\/sol3\/papers.cfm?abstract_id=3584331."},{"key":"bibr10-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1038\/s41586-018-0579-z"},{"key":"bibr11-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1093\/phe\/phs017"},{"key":"bibr12-20539517241290215","doi-asserted-by":"publisher","DOI":"10.5235\/17579961.5.1.113"},{"key":"bibr13-20539517241290215","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2014.302138"},{"key":"bibr14-20539517241290215","doi-asserted-by":"publisher","DOI":"10.5334\/dsj-2020-043"},{"key":"bibr15-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2014-102374"},{"key":"bibr16-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1177\/2053951720933924"},{"key":"bibr17-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1017\/S0003055412000536"},{"key":"bibr18-20539517241290215","unstructured":"Clemence M, Gilby N, Shah J, et al. (2013) Wellcome Trust Monitor Report Wave 2: Tracking Public Views on Science, Research and Science Education. Available at: https:\/\/wellcome.org\/sites\/default\/files\/monitor-wave2-full-wellcome-may13.pdf."},{"key":"bibr19-20539517241290215","doi-asserted-by":"publisher","DOI":"10.2307\/2129473"},{"key":"bibr20-20539517241290215","unstructured":"Collins R (2023) Response to highly misleading article in The Observer. Nov 12. Available at: https:\/\/www.ukbiobank.ac.uk\/learn-more-about-uk-biobank\/news\/response-to-highly-misleading-article-in-the-observer."},{"key":"bibr21-20539517241290215","volume-title":"The Business of Media: Corporate Media and the Public Interest","author":"Croteau D","year":"2006"},{"key":"bibr22-20539517241290215","volume-title":"Politics, Economics, and Welfare","author":"Dahl RA","year":"1954"},{"key":"bibr23-20539517241290215","unstructured":"Das S (2023) Private UK health data donated for medical research shared with insurance companies. Nov 12.\n                      The Observer.\n                      https:\/\/www.theguardian.com\/technology\/2023\/nov\/12\/private-uk-health-data-donated-medical-research-shared-insurance-companies."},{"key":"bibr24-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1038\/s41562-017-0279-y"},{"key":"bibr25-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1177\/009059178000800108"},{"issue":"1","key":"bibr26-20539517241290215","first-page":"1","volume":"29","author":"Downs A","year":"1962","journal-title":"Social Research"},{"key":"bibr27-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1016\/S2468-2667(17)30075-0"},{"key":"bibr28-20539517241290215","volume-title":"Insurance as Governance","author":"Ericson R","year":"2003"},{"key":"bibr29-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pbio.1001983"},{"key":"bibr30-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1525\/9780520942615"},{"key":"bibr78-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1016\/j.aos.2013.11.002"},{"key":"bibr31-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1162\/daed.2007.136.4.10"},{"key":"bibr32-20539517241290215","unstructured":"Germain T (2024) 23andMe wants to double down on DNA data mining with its business in a tailspin. Feb 14.\n                      Gizmodo.\n                      https:\/\/gizmodo.com\/23andme-admits-mining-your-dna-data-is-its-last-hope-1851252582."},{"key":"bibr33-20539517241290215","unstructured":"Gov UK\n                      (2018) Code on Genetic Testing and Insurance. Accessed 7 February 2024: https:\/\/www.gov.uk\/government\/publications\/code-on-genetic-testing-and-insurance."},{"key":"bibr34-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6963-13-422"},{"key":"bibr35-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1097\/01.GIM.0000162874.58370.C0"},{"key":"bibr36-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1177\/2053951720935616"},{"key":"bibr37-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1080\/09505430802519256"},{"key":"bibr38-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1007\/s10865-016-9820-0"},{"issue":"8","key":"bibr39-20539517241290215","first-page":"1045","volume":"35","author":"Knutson KL","year":"2018","journal-title":"Chronobiology International"},{"key":"bibr40-20539517241290215","doi-asserted-by":"publisher","DOI":"10.7208\/chicago\/9780226416502.001.0001"},{"key":"bibr41-20539517241290215","volume-title":"The Public Philosophy","author":"Lippmann W","year":"1955"},{"key":"bibr42-20539517241290215","unstructured":"Littlejohns P (2020) Aviva\u2019s Colm Holmes on claims inflation, stupid drivers and commercial insurance.\n                      NS Insurance\n                      , 7 February. Accessed 2 February 2024: https:\/\/www.nsinsurance.com\/analysis\/aviva-colm-holmes-claims-inflation\/."},{"key":"bibr43-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1093\/eurheartj\/ehx254"},{"key":"bibr44-20539517241290215","volume-title":"Insuring Security: Biopolitics, Security and Risk","author":"Lobo-Guerrero L","year":"2011"},{"key":"bibr45-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1287\/orsc.1090.0472"},{"key":"bibr46-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1093\/shm\/hkab091"},{"key":"bibr76-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1080\/09505431.2017.1398223"},{"key":"bibr47-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1515\/9780822388043"},{"key":"bibr77-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2020.1806373"},{"key":"bibr48-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1177\/03063127231211933"},{"key":"bibr49-20539517241290215","volume-title":"Emerging Biotechnologies: Technology, Choice and the Public Good","author":"Nuffield Council on Bioethics (NCoB)","year":"2012"},{"key":"bibr50-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1089\/bio.2021.0063"},{"key":"bibr51-20539517241290215","volume-title":"Merchants of Doubt: How a Handful of Scientists Obscured the Truth on Issues From Tobacco Smoke to Global Warming","author":"Oreskes N","year":"2010"},{"key":"bibr52-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1136\/bjsports-2022-105435"},{"key":"bibr53-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1186\/s12966-021-01154-3"},{"key":"bibr54-20539517241290215","unstructured":"Pitelli S (2019) My Letter to the UK Biobank.\n                      Unwashed Genes\n                      , Dec 19. Available at: https:\/\/unwashedgenes.blogspot.com\/2019\/12\/my-letter-to-uk-biobank.html."},{"key":"bibr55-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1111\/rmir.12195"},{"key":"bibr56-20539517241290215","doi-asserted-by":"publisher","DOI":"10.2307\/j.ctv120qqqr"},{"key":"bibr57-20539517241290215","doi-asserted-by":"publisher","DOI":"10.4159\/9780674042605"},{"key":"bibr58-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1177\/03063127231186437"},{"key":"bibr59-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1080\/03085147.2024.2328992"},{"key":"bibr60-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1038\/s41591-023-02440-2"},{"key":"bibr61-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1177\/000276425800100514"},{"key":"bibr62-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-030-49388-2_2"},{"key":"bibr63-20539517241290215","doi-asserted-by":"publisher","DOI":"10.2307\/2126954"},{"key":"bibr64-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1016\/j.annepidem.2016.05.007"},{"key":"bibr65-20539517241290215","volume-title":"American Medicine and the Public Interest","author":"Stevens R","year":"1998"},{"key":"bibr66-20539517241290215","doi-asserted-by":"publisher","DOI":"10.7208\/chicago\/9780226635187.001.0001"},{"key":"bibr79-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1038\/s41431-019-0426-1"},{"key":"bibr67-20539517241290215","doi-asserted-by":"publisher","DOI":"10.4324\/9781315208893-11"},{"issue":"2","key":"bibr68-20539517241290215","first-page":"229","volume":"80","author":"Tsosie R","year":"2019","journal-title":"Montana Law Review"},{"key":"bibr69-20539517241290215","unstructured":"UK Biobank Access Policy version 2.1\n                      (2022, July) https:\/\/www.ukbiobank.ac.uk\/media\/hfnf2w0f\/20220722-access-procedures-v2-1-final.pdf."},{"key":"bibr70-20539517241290215","unstructured":"UK Biobank Ethics and Governance Framework version 3\n                      (2007) https:\/\/www.ukbiobank.ac.uk\/media\/0xsbmfmw\/egf.pdf."},{"issue":"2","key":"bibr71-20539517241290215","first-page":"573","volume":"131","author":"Viljoen S","year":"2021","journal-title":"Yale Law Journal"},{"key":"bibr72-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1016\/j.ssmph.2022.101194"},{"key":"bibr73-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1093\/ije\/dyac022"},{"key":"bibr74-20539517241290215","doi-asserted-by":"publisher","DOI":"10.1038\/jhg.2015.151"},{"key":"bibr75-20539517241290215","unstructured":"Wellcome Trust\n                      (2016) The One-Way Mirror: Public attitudes to commercial access to health data. Available at: https:\/\/wellcome.ac.uk\/sites\/default\/files\/public-attitudes-to-commercial-access-to-health-data-wellcome-mar16.pdf (accessed 13 September 2019)."}],"container-title":["Big Data &amp; Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/20539517241290215","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/20539517241290215","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/20539517241290215","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/20539517241290215","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T13:00:58Z","timestamp":1777381258000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/20539517241290215"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,10,15]]},"references-count":79,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2024,12]]}},"alternative-id":["10.1177\/20539517241290215"],"URL":"https:\/\/doi.org\/10.1177\/20539517241290215","relation":{},"ISSN":["2053-9517","2053-9517"],"issn-type":[{"value":"2053-9517","type":"print"},{"value":"2053-9517","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,10,15]]},"article-number":"20539517241290215"}}