{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T09:59:10Z","timestamp":1790416750413,"version":"4.1.0"},"reference-count":70,"publisher":"Springer Science and Business Media LLC","license":[{"start":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T00:00:00Z","timestamp":1790380800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T00:00:00Z","timestamp":1790380800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100013342","name":"NIHR Imperial Biomedical Research Centre","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100013342","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["205456\/Z\/16\/Z"],"award-info":[{"award-number":["205456\/Z\/16\/Z"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Med Health Care and Philos"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>In this paper, we revisit the topic of genetic biobanks and the ethical issues surrounding them. Focusing on the centrality of altruism to their conception, design and governance, we explore the ways in which the idea of participation as a \u201cfree gift\u201d has served to define and constrain the terms of discussion around the ethics of biobanks. Discussing empirical evidence of widespread expectations for personal health information, often framed as a \u201cdiagnostic misconception\u201d, we highlight the ways in which the concept is frequently employed to protect a particular moral economy of research in which participants\u2019 expectations around the return of personal health information are reduced to a lack of informed consent. Conversely, we suggest that reciprocity provides a more accurate empirical account of participation in biobanks, although this is not merely a form of transactional exchange that flips the script of biobank participation from altruism to self-interest. We conclude that without a reconsideration of the entire conceptual edifice of biobanking, calls to create more reciprocal and solidarity-based models are likely to do little to change the status quo, and that a deeper and more anthropologically informed consideration of reciprocity would serve to improve frameworks for addressing the ethical issues that biobanks entail.<\/jats:p>","DOI":"10.1007\/s11019-026-10398-4","type":"journal-article","created":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T09:24:30Z","timestamp":1790414670000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Biobanks, the \u2018diagnostic misconception\u2019 and the distinction between altruism and reciprocity"],"prefix":"10.1007","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9008-4663","authenticated-orcid":false,"given":"Kirsten","family":"Bell","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9822-9094","authenticated-orcid":false,"given":"Sophie","family":"Day","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8238-5036","authenticated-orcid":false,"given":"Helen","family":"Ward","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,9,26]]},"reference":[{"key":"10398_CR71","unstructured":"23andMe. 2025. TTAM Research Institute, A nonprofit public benefit corporation, completes the acquisition of 23andMe assets. https:\/\/mediacenter.23andme.com\/press-releases\/ttam-research-institute-nonprofit-public-benefit-corporation\/. Accessed 8 September 2026."},{"key":"10398_CR1","doi-asserted-by":"crossref","unstructured":"Adams, Carolyn, Judy Allen and Felicity Flack. 2022. Sharing linked data for health research toward better decision making. Cambridge: Cambridge University Press.","DOI":"10.1017\/9781108675789"},{"key":"10398_CR2","doi-asserted-by":"publisher","first-page":"68","DOI":"10.1016\/j.tibtech.2012.11.007","volume":"31","author":"Megan Allyse","year":"2013","unstructured":"Allyse, Megan. 2013. 23 and me, we, and you: Direct-to-consumer genetics, intellectual property, and informed consent. Trends in Biotechnology 31: 68\u201369. https:\/\/doi.org\/10.1016\/j.tibtech.2012.11.007.","journal-title":"Trends in Biotechnology"},{"key":"10398_CR4","doi-asserted-by":"publisher","first-page":"319","DOI":"10.1016\/0160-2527(82)90026-7","volume":"5","author":"Paul S. Appelbaum","year":"1982","unstructured":"Appelbaum, Paul S., Loren H. Roth, and Charles Lidz. 1982. The therapeutic misconception: Informed consent in psychiatric research. International Journal of Law and Psychiatry 5: 319\u2013329. https:\/\/doi.org\/10.1016\/0160-2527(82)90026-7.","journal-title":"International Journal of Law and Psychiatry"},{"key":"10398_CR3","doi-asserted-by":"publisher","first-page":"20","DOI":"10.2307\/3562038","volume":"17","author":"Paul S. Appelbaum","year":"1987","unstructured":"Appelbaum, Paul S., Loren H. Roth, Charles W. Lidz, Paul Benson, and William Winslade. 1987. False hopes and best data: Consent to research and the therapeutic misconception. Hastings Center Report 17: 20\u201324. https:\/\/doi.org\/10.2307\/3562038.","journal-title":"Hastings Center Report"},{"key":"10398_CR5","doi-asserted-by":"publisher","first-page":"159","DOI":"10.1089\/gtmb.2016.0412.","volume":"21","author":"Gaia Barazzeti","year":"2017","unstructured":"Barazzeti, Gaia, Samuele Cavalli, Lazare Benaroyo, and Alain Kaufmann. 2017. \u2018Still rather hazy at present\u2019: Citizens\u2019 and physicians\u2019 views on returning results from biobank research using broad consent. Genetic Testing & Molecular Biomarkers 21: 159\u2013165. https:\/\/doi.org\/10.1089\/gtmb.2016.0412..","journal-title":"Genetic Testing & Molecular Biomarkers"},{"key":"10398_CR6","doi-asserted-by":"publisher","first-page":"533","DOI":"10.1007\/s11019-025-10276-5","volume":"28","author":"Gulzaar Barn","year":"2025","unstructured":"Barn, Gulzaar. 2025. Consent and its discontents: The case of UK Biobank. Medicine, Health Care, and Philosophy 28: 533\u2013547. https:\/\/doi.org\/10.1007\/s11019-025-10276-5.","journal-title":"Medicine, Health Care, and Philosophy"},{"key":"10398_CR7","doi-asserted-by":"publisher","first-page":"251","DOI":"10.1017\/S1745855206060029","volume":"1","author":"Michael Barr","year":"2006","unstructured":"Barr, Michael. 2006. I\u2019m not really read up on genetics\u2019: Biobanks and the social context of informed consent. BioSocieties 1: 251\u2013262. https:\/\/doi.org\/10.1017\/S1745855206060029.","journal-title":"BioSocieties"},{"key":"10398_CR8","doi-asserted-by":"publisher","first-page":"75","DOI":"10.1016\/j.ijlp.2005.09.001","volume":"29","author":"Gary S. Belkin","year":"2006","unstructured":"Belkin, Gary S. 2006. Misconceived bioethics? The misconception of the \u2018therapeutic misconception.\u2019 International Journal of Law and Psychiatry 29: 75\u201385. https:\/\/doi.org\/10.1016\/j.ijlp.2005.09.001.","journal-title":"International Journal of Law and Psychiatry"},{"key":"10398_CR9","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1111\/j.1467-8519.2010.01823.x.","volume":"26","author":"Giovanni Boniolo","year":"2012","unstructured":"Boniolo, Giovanni, Pier Paolo Di. Fiore, and Salvatore Pece. 2012. Trusted consent and research biobanks: towards a \u2018new alliance\u2019 between researchers and donors. Bioethics 26: 93\u2013100. https:\/\/doi.org\/10.1111\/j.1467-8519.2010.01823.x..","journal-title":"Bioethics"},{"key":"10398_CR10","doi-asserted-by":"publisher","first-page":"850","DOI":"10.1111\/j.1467-9566.2006.00546.x","volume":"28","author":"Helen Busby","year":"2006","unstructured":"Busby, Helen. 2006. Biobanks, bioethics and concepts of donated blood in the UK. Sociology of Health & Illness 28: 850\u2013865. https:\/\/doi.org\/10.1111\/j.1467-9566.2006.00546.x.","journal-title":"Sociology of Health & Illness"},{"key":"10398_CR11","doi-asserted-by":"publisher","first-page":"37","DOI":"10.1001\/jama.295.1.37-a","volume":"295","author":"Ellen Wright Clayton","year":"2006","unstructured":"Clayton, Ellen Wright, and Lainie Friedman Ross. 2006. Letter to the Editor: Implications of disclosing individual results of clinical research. JAMA 295: 37. https:\/\/doi.org\/10.1001\/jama.295.1.37-a.","journal-title":"JAMA"},{"key":"10398_CR12","doi-asserted-by":"publisher","first-page":"128","DOI":"10.1089\/gtmb.2016.0394","volume":"21","author":"Eva De Clerq","year":"2017","unstructured":"Clerq, Eva De, Jane Kaye, Susan M. Wolf, Barbara A. Koenig, and Bernice S. Elger. 2017. Returning results in biobank research: Global trends and solutions. Genetic Testing & Molecular Biomarkers 21: 128\u2013131. https:\/\/doi.org\/10.1089\/gtmb.2016.0394.","journal-title":"Genetic Testing & Molecular Biomarkers"},{"key":"10398_CR13","doi-asserted-by":"publisher","first-page":"78","DOI":"10.4324\/9780203577929","volume-title":"Genetic databases: Socio-ethical issues in the collection and use of DNA","author":"Oonagh Corrigan","year":"2004","unstructured":"Corrigan, Oonagh. 2004. Informed consent: the contradictory ethical safeguards in pharmacogenetics. In Genetic databases: Socio-ethical issues in the collection and use of DNA, ed. Richard Tutton and Oonagh Corrigan, 78\u201396. London: Routledge."},{"key":"10398_CR14","doi-asserted-by":"publisher","DOI":"10.3389\/fcell.2019.00074","author":"Terry C Davis","year":"2019","unstructured":"Davis, Terry C., Connie L. Arnold, Glen Mills, and Lucio Miele. 2019. A qualitative study exploring barriers and facilitators of enrolling underrepresented populations in clinical trials and biobanking. Frontiers in Cell & Developmental Biology 7. https:\/\/doi.org\/10.3389\/fcell.2019.00074.","journal-title":"Frontiers in Cell & Developmental Biology"},{"key":"10398_CR15","doi-asserted-by":"publisher","first-page":"397","DOI":"10.1136\/medethics-2017-104588","volume":"44","author":"Sandi Dheensa","year":"2018","unstructured":"Dheensa, Sandi, Gabrielle Samuel, Anneke M. Lucassen, and Bobbie Farsides. 2018. Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project. Journal of Medical Ethics 44: 397\u2013403. https:\/\/doi.org\/10.1136\/medethics-2017-104588.","journal-title":"Journal of Medical Ethics"},{"key":"10398_CR16","doi-asserted-by":"publisher","DOI":"10.7312\/dick15974","volume-title":"Me medicine vs. we medicine: Reclaiming biotechnology for the common good","author":"Donna Dickenson","year":"2013","unstructured":"Dickenson, Donna. 2013. Me medicine vs. we medicine: Reclaiming biotechnology for the common good. New York: Columbia University Press."},{"issue":"12","key":"10398_CR17","doi-asserted-by":"publisher","first-page":"2209","DOI":"10.3390\/ijerph16122209","volume":"16","author":"Jan Domaradzki","year":"2019","unstructured":"Domaradzki, Jan, and Jakub Pawlikowski. 2019. Public attitudes toward biobanking of human biological material for research purposes: A literature review. International Journal of Environmental Research in Public Health 16 (12): 2209. https:\/\/doi.org\/10.3390\/ijerph16122209.","journal-title":"International Journal of Environmental Research in Public Health"},{"key":"10398_CR18","unstructured":"Douglas, Mary. 1990. In Marcel Mauss. In The Gift. London: Routledge."},{"key":"10398_CR19","doi-asserted-by":"publisher","first-page":"209","DOI":"10.1111\/j.1464-410X.2009.08666.x","volume":"104","author":"Patricia E. Fitzpatrick","year":"2009","unstructured":"Fitzpatrick, Patricia E., Kenneth D. McKenzie, Avril Beasley, and John D. Sheehan. 2009. Patients attending tertiary referral urology clinics: Willingness to participate in tissue banking. BJU International 104: 209\u2013213. https:\/\/doi.org\/10.1111\/j.1464-410X.2009.08666.x.","journal-title":"BJU International"},{"key":"10398_CR20","doi-asserted-by":"publisher","first-page":"14","DOI":"10.1038\/ejhg.2012.104","volume":"21","author":"George Gaskell","year":"2013","unstructured":"Gaskell, George, Herbert Gottweis, Johannes Starkbuam, Monica M. Gerber, et al. 2013. Publics and biobanks: Pan-European diversity and the challenge of responsible innovation. European Journal of Human Genetics 21: 14\u201320. https:\/\/doi.org\/10.1038\/ejhg.2012.104.","journal-title":"European Journal of Human Genetics"},{"key":"10398_CR21","doi-asserted-by":"publisher","first-page":"611","DOI":"10.1038\/gim.2011.50","volume":"4","author":"Colin M.E. Halverson","year":"2012","unstructured":"Halverson, Colin M.E., and Lainie Frieman Ross. 2012. Incidental findings of therapeutic misconception in biobank-based research. Genetics in Medicine 4: 611\u2013615. https:\/\/doi.org\/10.1038\/gim.2011.50.","journal-title":"Genetics in Medicine"},{"key":"10398_CR22","doi-asserted-by":"publisher","first-page":"773","DOI":"10.1136\/jmedgenet-2014-102692","volume":"51","author":"Irene Hirschberg","year":"2014","unstructured":"Hirschberg, Irene, Hannes Kahrass, and Daniel Strech. 2014. International requirements for consent in biobank research: Qualitative review of research guidelines. Journal of Medical Genetics 51: 773\u2013781. https:\/\/doi.org\/10.1136\/jmedgenet-2014-102692.","journal-title":"Journal of Medical Genetics"},{"key":"10398_CR23","doi-asserted-by":"publisher","first-page":"429","DOI":"10.5661\/bger-25-429","volume":"25","author":"Klaus Hoeyer","year":"2008","unstructured":"Hoeyer, Klaus. 2008. The ethics of research biobanking: A critical review of the literature. Biotechnology and Genetic Engineering Reviews 25: 429\u2013452. https:\/\/doi.org\/10.5661\/bger-25-429.","journal-title":"Biotechnology and Genetic Engineering Reviews"},{"key":"10398_CR24","first-page":"59","volume-title":"Knowing New Biotechnologies","author":"Heidi C. Howard","year":"2015","unstructured":"Howard, Heidi C., Sigrid Sterckx, Julian Cockbain, Anne Cambon-Thomsen, and Pascal Borry. 2015. The convergence of direct-to-consumer genetic testing companies and biobanking activities: The example of 23andme. In Knowing New Biotechnologies, ed. Matthias Wienroth and Eug\u00e9nia Rodrigues, 59\u201374. London: Routledge."},{"key":"10398_CR25","doi-asserted-by":"publisher","first-page":"2378","DOI":"10.1002\/ajmg.a.33043","volume":"149A","author":"Mary M. Jenkins","year":"2009","unstructured":"Jenkins, Mary M., Erika Reed-Gross, Sonja A. Rasmussen, and Wanda D. Barfield. 2009. Maternal attitudes toward DNA collection for gene-environment studies: A qualitative research study. American Journal of Medical Genetics - Seminars in Medical Genetics, Part A 149A: 2378\u20132386. https:\/\/doi.org\/10.1002\/ajmg.a.33043.","journal-title":"American Journal of Medical Genetics - Seminars in Medical Genetics, Part A"},{"key":"10398_CR26","first-page":"33","volume-title":"Principles and Practice in Biobank Governance","author":"Nadya Kanellopoulou","year":"2009","unstructured":"Kanellopoulou, Nadya. 2009. Reconsidering altruism, introducing reciprocity and empowerment in the governance of biobanks. In Principles and Practice in Biobank Governance, ed. Jenny Kaye and Mark Stranger, 33\u201352. London: Routledge."},{"key":"10398_CR27","doi-asserted-by":"publisher","first-page":"45","DOI":"10.1093\/acprof:oso\/9780199587551.003.0005","volume-title":"Human tissue research: A European perspective on the ethical and legal challenges","author":"Nadja Kanellopoulou","year":"2011","unstructured":"Kanellopoulou, Nadja. 2011. Reciprocity, trust, and public interest in research biobanking: in search of a balance. In Human tissue research: A European perspective on the ethical and legal challenges, ed. Christian Lenk, Nils Hoppe, Katherina Beier, and Claudia Wiesemann, 45\u201353. Oxford: Oxford University Press."},{"key":"10398_CR28","doi-asserted-by":"publisher","first-page":"393","DOI":"10.1111\/j.1399-0004.2006.00614.x","volume":"69","author":"KA Kaphingst","year":"2006","unstructured":"Kaphingst, K.A., J. Janoff, L.N. Harris, and K.M. Emmons. 2006. Views of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic research. Clinical Genetics 69: 393\u2013398. https:\/\/doi.org\/10.1111\/j.1399-0004.2006.00614.x.","journal-title":"Clinical Genetics"},{"key":"10398_CR29","doi-asserted-by":"publisher","first-page":"S4","DOI":"10.1002\/hast.133","volume":"43","author":"Nancy E. Kass","year":"2013","unstructured":"Kass, Nancy E., Ruth R. Faden, Steven N. Goodman, Peter Pronovost, Sean Tunis, and Tom L. Beauchamp. 2013. The research-treatment distinction: A problematic approach for determining which activities should have ethical oversight. Hastings Center Report 43: S4\u2013S15. https:\/\/doi.org\/10.1002\/hast.133.","journal-title":"Hastings Center Report"},{"key":"10398_CR30","doi-asserted-by":"publisher","first-page":"49","DOI":"10.1186\/s12910-015-0041-9","volume":"16","author":"Sarah Knerr","year":"2015","unstructured":"Knerr, Sarah, and Rachel M. Ceballos. 2015. Giving samples or \u2018getting checked\u2019: Measuring conflation of observational biospecimen research and clinical care in Latino communities. BMC Medical Ethics 16: 49.","journal-title":"BMC Medical Ethics"},{"key":"10398_CR31","doi-asserted-by":"publisher","first-page":"107","DOI":"10.1080\/15265160902918788","volume":"9","author":"Bartha M. Knoppers","year":"2009","unstructured":"Knoppers, Bartha M., and Claude Laberge. 2009. Return of \u2018accurate\u2019 and \u2018actionable\u2019 results: Yes! American Journal of Bioethics 9: 107\u2013109. https:\/\/doi.org\/10.1080\/15265160902918788.","journal-title":"American Journal of Bioethics"},{"key":"10398_CR32","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1080\/15265161.2020.1851813","volume":"21","author":"Sandra Soo-Jin Lee","year":"2021","unstructured":"Lee, Sandra Soo-Jin. 2021. Obligations of the \u2018gift\u2019: Reciprocity and responsibility in precision medicine. American Journal of Bioethics 21: 57\u201366. https:\/\/doi.org\/10.1080\/15265161.2020.1851813.","journal-title":"American Journal of Bioethics"},{"key":"10398_CR33","doi-asserted-by":"publisher","first-page":"240","DOI":"10.1111\/bioe.13381","volume":"39","author":"Yoon Seo Lee","year":"2024","unstructured":"Lee, Yoon Seo, Nelson Luis Badio Garrido, George Lord, Zane Allan Maggio, and Bohdan B. Khomtchouk. 2024. Ethical considerations for biobanks serving underrepresented populations. Bioethics 39: 240\u2013249. https:\/\/doi.org\/10.1111\/bioe.13381.","journal-title":"Bioethics"},{"key":"10398_CR34","doi-asserted-by":"publisher","DOI":"10.1007\/s11948-021-00330-9","volume":"27","author":"Jurate Lekstutiene","year":"2021","unstructured":"Lekstutiene, Jurate, S\u00f8ren. Holm, and Eugenijus Gefenas. 2021. Biobanks and individual health related findings: From an obstacle to an incentive. Science and Engineering Ethics 27: 55. https:\/\/doi.org\/10.1007\/s11948-021-00330-9.","journal-title":"Science and Engineering Ethics"},{"issue":"6","key":"10398_CR35","doi-asserted-by":"publisher","first-page":"368","DOI":"10.1159\/000276767","volume":"13","author":"AA Lemke","year":"2010","unstructured":"Lemke, A.A., W.A. Wolf, J. Hebert-Beirne, and M.E. Smith. 2010. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 13 (6): 368\u2013377. https:\/\/doi.org\/10.1159\/000276767.","journal-title":"Public Health Genomics"},{"key":"10398_CR36","doi-asserted-by":"publisher","first-page":"1029","DOI":"10.1002\/ajmg.a.34414","volume":"158A","author":"Amy A. Lemke","year":"2012","unstructured":"Lemke, Amy A., Colin Halverson, and Lainie Friedman Ross. 2012. Biobank participation and returning research results: Perspectives from a deliberative engagement in South Side Chicago. American Journal of Medical Genetics - Seminars in Medical Genetics, Part A 158A: 1029\u20131037. https:\/\/doi.org\/10.1002\/ajmg.a.34414.","journal-title":"American Journal of Medical Genetics - Seminars in Medical Genetics, Part A"},{"key":"10398_CR37","doi-asserted-by":"publisher","first-page":"785","DOI":"10.1111\/hex.12376","volume":"19","author":"Louise Locock","year":"2016","unstructured":"Locock, Louise, and Anne-Marie R. Boylan. 2016. Biosamples as gifts? How participants in biobanking projects talk about donation. Health Expectations 19: 785\u2013987.","journal-title":"Health Expectations"},{"key":"10398_CR38","doi-asserted-by":"publisher","DOI":"10.1017\/S0016672319000107","volume":"101","author":"Ian McGonigle","year":"2019","unstructured":"McGonigle, Ian. 2019. Genomic data and the dividual self. Genetics in Research 101: e12.","journal-title":"Genetics in Research"},{"issue":"6","key":"10398_CR39","doi-asserted-by":"publisher","first-page":"28","DOI":"10.1080\/15265160600935811","volume":"6","author":"Leslie A. Meltzer","year":"2006","unstructured":"Meltzer, Leslie A. 2006. Undesirable implications of disclosing individual genetic results to research participants. American Journal of Bioethics 6 (6): 28\u201330. https:\/\/doi.org\/10.1080\/15265160600935811.","journal-title":"American Journal of Bioethics"},{"key":"10398_CR40","doi-asserted-by":"publisher","first-page":"1120","DOI":"10.1016\/j.gim.2022.01.002","volume":"24","author":"Richard Milne","year":"2022","unstructured":"Milne, Richard, Katherine I. Morley, Mohamed A. Almarri, Jerome Atutornu, Elena E. Baranova, Paul Bevan, et al. 2022. Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries. Genetics in Medicine 24: 1120\u20131129. https:\/\/doi.org\/10.1016\/j.gim.2022.01.002.","journal-title":"Genetics in Medicine"},{"key":"10398_CR42","doi-asserted-by":"publisher","first-page":"330","DOI":"10.1177\/01622439093402","volume":"35","author":"Robert Mitchell","year":"2010","unstructured":"Mitchell, Robert, and Catherine Waldby. 2010. National Biobanks: clinical labor, risk production, and the creation of biovalue. Science, Technology, & Human Values 35: 330\u201355. https:\/\/doi.org\/10.1177\/01622439093402.","journal-title":"Science, Technology, & Human Values"},{"key":"10398_CR41","doi-asserted-by":"publisher","first-page":"4","DOI":"10.1186\/s40900-015-0001-z","volume":"1","author":"Derick Mitchell","year":"2015","unstructured":"Mitchell, Derick, Jan Geissler, Alison Parry-Jones, Hans Keulens, Doris C. Schmitt, Rosaria Vavassori, and Balwir Matharoo-Ball. 2015. Biobanking from the patient perspective. Research Involvement & Engagement 1: 4. https:\/\/doi.org\/10.1186\/s40900-015-0001-z.","journal-title":"Research Involvement & Engagement"},{"key":"10398_CR43","doi-asserted-by":"publisher","first-page":"36","DOI":"10.1080\/15265160802513093","volume":"8","author":"Juli Murphy","year":"2008","unstructured":"Murphy, Juli, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy, and Kathy Hudson. 2008. Public expectations for return of results from large-cohort genetic research. American Journal of Bioethics 8: 36\u201343. https:\/\/doi.org\/10.1080\/15265160802513093.","journal-title":"American Journal of Bioethics"},{"key":"10398_CR44","doi-asserted-by":"publisher","first-page":"81","DOI":"10.1007\/s11019-005-7984-4","volume":"9","author":"Tore Nilstun","year":"2006","unstructured":"Nilstun, Tore, and G\u00f6ran. Hermer\u00e9n. 2006. Human tissue samples and ethics \u2013 attitudes of the general public in Sweden to biobank research. Medicine, Health Care & Philosophy 9: 81\u201386. https:\/\/doi.org\/10.1007\/s11019-005-7984-4.","journal-title":"Medicine, Health Care & Philosophy"},{"key":"10398_CR45","doi-asserted-by":"publisher","first-page":"35","DOI":"10.1586\/erm.12.116","volume":"13","author":"H\u00e9l\u00e8ne Nobile","year":"2013","unstructured":"Nobile, H\u00e9l\u00e8ne., Eric Vermeulen, Kristoff Thys, Manuela M. Mergmann, and Pascal Borry. 2013. Why do participants enroll in population biobank studies? A systematic literature review. Expert Review of Molecular Diagnostics 13: 35\u201347. https:\/\/doi.org\/10.1586\/erm.12.116.","journal-title":"Expert Review of Molecular Diagnostics"},{"key":"10398_CR46","doi-asserted-by":"publisher","first-page":"10","DOI":"10.1111\/j.1467-9515.2006.00474.x","volume":"40","author":"Robert Pinker","year":"2006","unstructured":"Pinker, Robert. 2006. From gift relationships to quasi-markets: An odyssey along the policy paths of altruism and egoism. Social Policy & Administration 40: 10\u201325. https:\/\/doi.org\/10.1111\/j.1467-9515.2006.00474.x.","journal-title":"Social Policy & Administration"},{"key":"10398_CR47","first-page":"147","volume-title":"Genetics as Social Practice","author":"Barbara Prainsack","year":"2014","unstructured":"Prainsack, Barbara. 2014. Understanding participation: The \u2018citizen science\u2019 of genetics. In Genetics as Social Practice, ed. Barbara Prainsack, Silke Schicktanz, and Gabriele Werner-Felmayer, 147\u2013164. London: Routledge."},{"issue":"1","key":"10398_CR48","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1177\/01622439177361","volume":"43","author":"Barbara Prainsack","year":"2018","unstructured":"Prainsack, Barbara. 2018. The \u2018we\u2019 in the \u2018me\u2019: Solidarity and health care in the era of personalized medicine. Science, Technology, & Human Values 43 (1): 21\u201344. https:\/\/doi.org\/10.1177\/01622439177361.","journal-title":"Science, Technology, & Human Values"},{"issue":"6","key":"10398_CR49","doi-asserted-by":"publisher","first-page":"8","DOI":"10.1080\/15265160600934772","volume":"6","author":"Vardit Ravitsky","year":"2006","unstructured":"Ravitsky, Vardit, and Benjamin S. Wilfond. 2006. Disclosing individual genetic results to research participants. American Journal of Bioethics 6 (6): 8\u201317. https:\/\/doi.org\/10.1080\/15265160600934772.","journal-title":"American Journal of Bioethics"},{"key":"10398_CR50","doi-asserted-by":"publisher","first-page":"1814","DOI":"10.1016\/j.gim.2022.05.010","volume":"24","author":"Aviad Raz","year":"2022","unstructured":"Raz, Aviad, Stefan Timmermans, Gil Eyal, Kyle Brothers, and Jusaku Minari. 2022. Challenges for precision public health communication in the era of genomic medicine. Genetics in Medicine 24: 1814\u20131820. https:\/\/doi.org\/10.1016\/j.gim.2022.05.010.","journal-title":"Genetics in Medicine"},{"key":"10398_CR51","volume-title":"Stone Age Economics","author":"Marshall Sahlins","year":"1972","unstructured":"Sahlins, Marshall. 1972. Stone Age Economics. London: Routledge."},{"key":"10398_CR52","doi-asserted-by":"publisher","first-page":"376","DOI":"10.1111\/j.1467-8519.2012.01989.x","volume":"26","author":"Ben Saunders","year":"2012","unstructured":"Saunders, Ben. 2012. Altruism or solidarity? The motives for organ donation and two proposals. Bioethics 26: 376\u2013381. https:\/\/doi.org\/10.1111\/j.1467-8519.2012.01989.x.","journal-title":"Bioethics"},{"key":"10398_CR53","doi-asserted-by":"publisher","first-page":"515","DOI":"10.1016\/j.annepidem.2016.05.007","volume":"26","author":"Kayte Spector-Bagdady","year":"2016","unstructured":"Spector-Bagdady, Kayte. 2016. The Google of healthcare\u2019: Enabling the privatization of genetic bio\/databanking. Annals of Epidemiology 26: 515\u2013519. https:\/\/doi.org\/10.1016\/j.annepidem.2016.05.007.","journal-title":"Annals of Epidemiology"},{"key":"10398_CR54","doi-asserted-by":"publisher","first-page":"382","DOI":"10.1038\/gim.2012.143","volume":"15","author":"Sigrid Sterckx","year":"2013","unstructured":"Sterckx, Sigrid, Julian Cockbain, Heidi Howard, Isabelle Huys, and Pascal Borry. 2013. Trust is not something you can reclaim easily\u2019: Patenting in the field of direct-to-consumer genetic testing. Genetics in Medicine 15: 382\u2013387. https:\/\/doi.org\/10.1038\/gim.2012.143.","journal-title":"Genetics in Medicine"},{"key":"10398_CR55","first-page":"23","volume-title":"Ownership and appropriation","author":"Marilyn Strathern","year":"2011","unstructured":"Strathern, Marilyn. 2011. Sharing, stealing and borrowing simultaneously. In Ownership and appropriation, ed. Veronica Strang and Mark Busse, 23\u201342. London: Routledge."},{"key":"10398_CR56","doi-asserted-by":"publisher","first-page":"153","DOI":"10.1007\/s12687-011-0052-2","volume":"2","author":"Samantha A. Streicher","year":"2011","unstructured":"Streicher, Samantha A., Saskia C. Sanderson, Ethylin Wang Jabs, Michael Diefenbach, Meg Smirnoff, Inga Peter, et al. 2011. Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: A focus group study. Journal of Community Genetics 2: 153\u2013163. https:\/\/doi.org\/10.1007\/s12687-011-0052-2.","journal-title":"Journal of Community Genetics"},{"key":"10398_CR57","doi-asserted-by":"publisher","DOI":"10.1017\/S0016672319000077","volume":"101","author":"Daniel Tigard","year":"2019","unstructured":"Tigard, Daniel. 2019. Changing the mindset for precision medicine: from incentivized biobanking models to genomic data. Genetics in Research 101: e10. https:\/\/doi.org\/10.1017\/S0016672319000077.","journal-title":"Genetics in Research"},{"key":"10398_CR58","volume-title":"The gift relationship: From human blood to social policy","author":"Richard Titmuss","year":"1970","unstructured":"Titmuss, Richard. 1970. The gift relationship: From human blood to social policy. Bristol: Policy Press."},{"key":"10398_CR59","doi-asserted-by":"publisher","first-page":"523","DOI":"10.1080\/0950543022000028965","volume":"11","author":"Richard Tutton","year":"2002","unstructured":"Tutton, Richard. 2002. Gift relationships in genetics research. Science as Culture 11: 523\u2013542. https:\/\/doi.org\/10.1080\/0950543022000028965.","journal-title":"Science as Culture"},{"key":"10398_CR60","first-page":"19","volume-title":"Genetic Databases: Socio-ethical Issues in the Collection and Use of DNA","author":"Richard Tutton","year":"2004","unstructured":"Tutton, Richard. 2004. Person, property and gift: Exploring languages of tissue donation to biomedical research. In Genetic Databases: Socio-ethical Issues in the Collection and Use of DNA, ed. Richard Tutton and Oonagh Corrigan, 19\u201338. London: Routledge."},{"key":"10398_CR61","volume-title":"Genetic databases: Socio-ethical issues in the collection and use of DNA","year":"2004","unstructured":"Tutton, Richard, and Oonagh Corrigan, eds. 2004. Genetic databases: Socio-ethical issues in the collection and use of DNA. London: Routledge."},{"key":"10398_CR62","doi-asserted-by":"publisher","first-page":"1081","DOI":"10.1111\/j.1467-9566.2011.01348.x","volume":"22","author":"Richard Tutton","year":"2011","unstructured":"Tutton, Richard, and Barbara Prainsack. 2011. Enterprising or altruistic selves? Making up research subjects in genetics research. Sociology of Health & Illness 22: 1081\u20131095.","journal-title":"Sociology of Health & Illness"},{"issue":"4","key":"10398_CR63","doi-asserted-by":"publisher","first-page":"453","DOI":"10.1080\/09581596.2010.517829","volume":"20","author":"Lars \u00d8ystein Ursin","year":"2010","unstructured":"Ursin, Lars \u00d8ystein. 2010. Biobank research and the welfare state project: The HUNT story. Critical Public Health 20 (4): 453\u2013463. https:\/\/doi.org\/10.1080\/09581596.2010.517829.","journal-title":"Critical Public Health"},{"key":"10398_CR64","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0258646","volume":"16","author":"Danya F Vears","year":"2021","unstructured":"Vears, Danya F., Joel T. Minion, Stephanie J. Roberts, James Cummings, Mavis Machirori, Mwenza Blell, et al. 2021. Return of individual research results from genomic research: A systematic review of stakeholder perspectives. PLoS ONE 16: e0258646. https:\/\/doi.org\/10.1371\/journal.pone.0258646.","journal-title":"PLoS ONE"},{"key":"10398_CR65","doi-asserted-by":"publisher","first-page":"393","DOI":"10.1007\/s00439-011-1021-x","volume":"130","author":"Susan E Wallace","year":"2011","unstructured":"Wallace, Susan E., and Alastair Kent. 2011. Population biobanks and returning individual research results: Mission impossible or new directions? Human Genetics 130: 393\u2013401. https:\/\/doi.org\/10.1007\/s00439-011-1021-x.","journal-title":"Human Genetics"},{"key":"10398_CR66","doi-asserted-by":"publisher","first-page":"99","DOI":"10.1007\/978-3-319-55120-3_6","volume-title":"Biobanking of Human Biospecimens: Principles and Practices","author":"Ma\u2019n H. Zawati","year":"2017","unstructured":"Zawati, Ma.\u2019n H., and Bartha Maria Knoppers. 2017. Population biobanks and the principle of reciprocity. In Biobanking of Human Biospecimens: Principles and Practices, ed. Pierre Hainaut, Jim Vaught, Kurt Zatloukal, and Markus Pasterk, 99\u2013110. Berlin: Springer."},{"key":"10398_CR68","doi-asserted-by":"publisher","DOI":"10.17226\/25094","volume-title":"Returning individual research results to participants: Guidance for a new research paradigm","author":"National Academies of Sciences, Engineering, and Medicine","year":"2018","unstructured":"National Academies of Sciences, Engineering, and Medicine. 2018. Returning individual research results to participants: Guidance for a new research paradigm. Washington, DC: The National Academies Press. https:\/\/doi.org\/10.17226\/25094."},{"key":"10398_CR69","unstructured":"Walsh, Fergus. 2014. World\u2019s biggest scanning project to track diseases, BBC News, 2 May. Accessed 20 November 2025."},{"key":"10398_CR70","unstructured":"World Medical Association. 2016. Declaration of Taipei. https:\/\/www.wma.net\/what-we-do\/medical-ethics\/declaration-of-taipei\/ Accessed 15 May 2026."}],"container-title":["Medicine, Health Care and Philosophy"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11019-026-10398-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11019-026-10398-4","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11019-026-10398-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T09:24:34Z","timestamp":1790414674000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11019-026-10398-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,26]]},"references-count":70,"alternative-id":["10398"],"URL":"https:\/\/doi.org\/10.1007\/s11019-026-10398-4","relation":{},"ISSN":["1386-7423","1572-8633"],"issn-type":[{"value":"1386-7423","type":"print"},{"value":"1572-8633","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,26]]},"assertion":[{"value":"26 November 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"10 September 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"26 September 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The authors have no competing interests to declare","order":1,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}]}}