{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T11:15:59Z","timestamp":1784200559722,"version":"3.55.0"},"reference-count":47,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T00:00:00Z","timestamp":1784160000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T00:00:00Z","timestamp":1784160000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Bioethics"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>Data\u2010intensive health research complicates traditional requirements for informed consent, due to the amount of data contributors and data points, the open\u2010ended nature of research questions, and repeated or secondary data use. To still enable data\u2010intensive health research, there is a move towards other\u2014generally lower\u2014standards for consent such as opt\u2010out systems, in current developments such as the European Health Data Space (EHDS). This is premised on the social value that data\u2010intensive health research is assumed to provide through advancing research and innovation. Traditionally, social value functions both as a fundamental requirement for research, as well as a ground to justify individual risk in research ethics. However, ongoing debates surrounding data\u2010intensive health research suggest that social value can also be used to justify lower standards of consent. Here, social value seems to obtain an additional and distinct function. This raises questions on the role of social value in research ethics and evaluations of the acceptability of research. In this paper, we examine three possible roles of social value: (i) to prevent research waste and set research priorities; (ii) to justify exposing research participants to risk; and (iii) to lower standards for consent. We discuss the presuppositions underlying these various roles. When social value is invoked to justify lower consent standards, this specifically impacts data contributors' ability to have control over when and how their data are used. Therefore, we propose that this use of social value requires arranging alternative forms of meaningful involvement and control for data contributors.<\/jats:p>","DOI":"10.1111\/bioe.70159","type":"journal-article","created":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T10:54:22Z","timestamp":1784199262000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The Role of Social Value in Data\u2010Intensive Health Research"],"prefix":"10.1111","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7520-3297","authenticated-orcid":false,"given":"Tessa I.","family":"van Rijssel","sequence":"first","affiliation":[{"name":"Department of IQ Health Radboud University Medical Center Nijmegen the Netherlands"},{"name":"Interdisciplinary Research Hub on Digitalization and Society (iHub) Radboud University Nijmegen the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sam H. A.","family":"Muller","sequence":"additional","affiliation":[{"name":"Utrecht School of Governance Utrecht University Utrecht the Netherlands"},{"name":"Julius Center for Primary Health and Health Sciences University Medical Center Utrecht Utrecht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7017-0043","authenticated-orcid":false,"given":"Marianne","family":"Boenink","sequence":"additional","affiliation":[{"name":"Department of IQ Health Radboud University Medical Center Nijmegen the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5530-7275","authenticated-orcid":false,"given":"Johannes J. M.","family":"van Delden","sequence":"additional","affiliation":[{"name":"Julius Center for Primary Health and Health Sciences University Medical Center Utrecht Utrecht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,16]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.283.20.2701"},{"key":"e_1_2_11_3_1","unstructured":"International Ethical Guidelines for Health\u2010related Research Involving Humans published2016."},{"key":"e_1_2_11_4_1","unstructured":"Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Participants published2024."},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/17407745221103567"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/bimj.201500044"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2020-106530"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/bioe.12551"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1748-720X.2005.tb00206.x"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2015.1062165"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-28731-7_15"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/lrh2.10206"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthpol.2023.104861"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1163\/15718093-bja10141"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2013.778645"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12939-024-02221-4"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1038\/456032a"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2017-104550"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2020-106152"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-020-00467-5"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2023.2296404"},{"key":"e_1_2_11_22_1","doi-asserted-by":"crossref","unstructured":"D. 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