{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T05:12:25Z","timestamp":1791954745545,"version":"4.3.4"},"reference-count":41,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,7,14]],"date-time":"2025-07-14T00:00:00Z","timestamp":1752451200000},"content-version":"vor","delay-in-days":13,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Ethics &amp; Human Research"],"published-print":{"date-parts":[[2025,7]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:p>Open science initiatives, intended to democratize access to research products, have made steady progress in shifting the global science culture toward practices like preregistration and data sharing. However, current open science efforts have not yet addressed the special obligation to ensure that research results are made accessible to the portion of the general population who contribute most directly to scientific advances: research participants. In this article, we explore the ethical obligation to communicate aggregate results to research participants and consider elements of open science infrastructure that could be amended for this purpose. We consider open questions for implementation related to the methods, timing, potential harms, oversight, and incentives for communicating aggregate results and pose solutions that could, following the example of open science initiatives, succeed in nudging investigators to reciprocate the efforts of research participants by sharing the scientific findings they helped to advance.<\/jats:p>","DOI":"10.1002\/eahr.60009","type":"journal-article","created":{"date-parts":[[2025,7,14]],"date-time":"2025-07-14T18:08:51Z","timestamp":1752516531000},"page":"29-36","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Revisiting the Obligation to Share Aggregate Results with Research Participants in the Era of Open Science"],"prefix":"10.1002","volume":"47","author":[{"given":"Katherine E.","family":"MacDuffie","sequence":"first","affiliation":[{"name":"Assistant professor at the Treuman Katz Center for Pediatric Bioethics and Palliative Care in the Seattle Children's Research Institute and Department of Pediatrics at the University of Washington School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benjamin S.","family":"Wilfond","sequence":"additional","affiliation":[{"name":"Professor at the Treuman Katz Center for Pediatric Bioethics and Palliative Care in the Seattle Children's Research Institute and Department of Pediatrics at the University of Washington School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie A.","family":"Kraft","sequence":"additional","affiliation":[{"name":"Assistant professor in the Department of Bioethics and Decision Sciences at the Geisinger College of Health Sciences"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,7,14]]},"reference":[{"key":"e_1_2_8_2_1","unstructured":"The White House \u201cFACT SHEET: Biden-Harris Administration Announces New Actions to Advance Open and Equitable Research \u201d January 11 2023 https:\/\/bidenwhitehouse.archives.gov\/ostp\/news-updates\/2024\/01\/31\/fact-sheet-biden-harris-administration-marks-the-anniversary-of-ostps-year-of-open-science\/."},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2021.20489"},{"key":"e_1_2_8_4_1","doi-asserted-by":"crossref","first-page":"1422","DOI":"10.1126\/science.aab2374","article-title":"Promoting an Open Research Culture","volume":"348","author":"Nosek B. A.","year":"2015","journal-title":"Science"},{"key":"e_1_2_8_5_1","unstructured":"The White House \u201cFACT SHEET.\u201d"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1289\/EHP4808"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj-2022-071178"},{"issue":"20","key":"e_1_2_8_8_1","doi-asserted-by":"crossref","first-page":"2701","DOI":"10.1001\/jama.283.20.2701","article-title":"What Makes Clinical Research Ethical?","volume":"283","author":"Declaration of Helsinki, World Medical Association","year":"2000","journal-title":"Journal of the American Medical Association"},{"issue":"2","key":"e_1_2_8_9_1","doi-asserted-by":"crossref","first-page":"391","DOI":"10.1016\/S0277-9536(03)00205-3","article-title":"Bereaved Parents\u2019 Experience of Research Participation","volume":"58","author":"Dyregrov K.","year":"2004","journal-title":"Social Science & Medicine"},{"key":"e_1_2_8_10_1","volume-title":"Silent Partners: Human Subjects and Research Ethics","author":"Dresser R.","year":"2017"},{"issue":"12","key":"e_1_2_8_11_1","doi-asserted-by":"crossref","first-page":"2215","DOI":"10.1016\/j.socscimed.2009.03.034","article-title":"Why Do People Cooperate with Medical Research? Findings from Three Studies","volume":"68","author":"Dixon-Woods M.","year":"2009","journal-title":"Social Science & Medicine"},{"issue":"3","key":"e_1_2_8_12_1","doi-asserted-by":"crossref","first-page":"267","DOI":"10.1111\/dewb.12071","article-title":"Sharing the Knowledge: Sharing Aggregate Genomic Findings with Research Participants in Developing Countries","volume":"15","author":"Kerasidou A.","year":"2015","journal-title":"Developing World Bioethics"},{"issue":"4","key":"e_1_2_8_13_1","doi-asserted-by":"crossref","first-page":"641","DOI":"10.1037\/0022-3514.57.4.641","article-title":"Altruism Reconsidered: The Effect of Denying Feedback on a Victim's Status to Empathic Witnesses","volume":"57","author":"Smith K. D.","year":"1989","journal-title":"Journal of Personality and Social Psychology"},{"key":"e_1_2_8_14_1","unstructured":"Fernandez Kodish andWeijer. \u201cInforming Study Participants of Research Results.\u201d"},{"issue":"1","key":"e_1_2_8_15_1","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1093\/ilar.40.1.29","article-title":"Community Representatives and Nonscientists on the IACUC: What Difference Should It Make?","volume":"40","author":"Dresser R.","year":"1999","journal-title":"ILAR Journal"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.conctc.2023.101136"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2019-032701"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2023-063436"},{"key":"e_1_2_8_19_1","unstructured":"Sgroet al. \u201cReturn of Aggregate Results to Study Participants.\u201d"},{"key":"e_1_2_8_20_1","unstructured":"Noseket al. \u201cPromoting an Open Research Culture.\u201d"},{"key":"e_1_2_8_21_1","unstructured":"Sgroet al. \u201cReturn of Aggregate Results to Study Participants\u201d; Schroter et al. \u201cFrequency and Format of Clinical Trial Results Dissemination to Patients\u201d; Baba Offringa and Butcher \u201cSharing Pediatric Trial Results with Youth and Families.\u201d"},{"issue":"5","key":"e_1_2_8_22_1","doi-asserted-by":"crossref","first-page":"299","DOI":"10.1136\/bmjebm-2022-112200","article-title":"Plain Language Summaries: Enhancing Patient-Centred Care and Improving Accessibility of Health Research","volume":"28","author":"Riganti P.","year":"2023","journal-title":"BMJ Evidence-Based Medicine"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/09636625241252565"},{"key":"e_1_2_8_24_1","unstructured":"Baba Offringa andButcher \u201cSharing Pediatric Trial Results with Youth and Families.\u201d"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1056\/AIcs2300145"},{"key":"e_1_2_8_26_1","unstructured":"Patient-Centered Outcomes Research Institute \u201cProcess for Peer Review of Primary Research and Public Release of Research Findings \u201d February 24 2015 https:\/\/www.pcori.org\/resources\/pcoris-process-peer-review-primary-research-and-public-release-research-findings"},{"key":"e_1_2_8_27_1","unstructured":"Bruhnet al. \u201cProviding Trial Results to Participants in Phase III Pragmatic Effectiveness RCTs.\u201d"},{"issue":"7","key":"e_1_2_8_28_1","doi-asserted-by":"crossref","first-page":"1081","DOI":"10.1038\/sj.bjc.6605592","article-title":"Participants\u2019 Uptake of Clinical Trial Results: A Randomised Experiment","volume":"102","author":"Mancini J.","year":"2010","journal-title":"British Journal of Cancer"},{"key":"e_1_2_8_29_1","doi-asserted-by":"crossref","first-page":"163","DOI":"10.1016\/j.conctc.2017.07.001","article-title":"Study Within a Trial (SWAT) Protocol. Participants\u2019 Perspectives and Preferences on Clinical Trial Result Dissemination: The TRUST Thyroid Trial Experience","volume":"7","author":"Racine E.","year":"2017","journal-title":"Contemporary Clinical Trials Communications"},{"key":"e_1_2_8_30_1","unstructured":"Dresser \u201cCommunity Representatives and Nonscientists on the IACUC \u201d at 30."},{"key":"e_1_2_8_31_1","volume-title":"Americans\u2019 Trust in Scientists, Positive Views of Science Continue to Decline","author":"Kennedy B.","year":"2023"},{"issue":"2","key":"e_1_2_8_32_1","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1177\/0162243912470009","article-title":"Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research","volume":"38","author":"Schroter","year":"2013","journal-title":"Science, Technology & Human Values"},{"issue":"4","key":"e_1_2_8_33_1","doi-asserted-by":"crossref","first-page":"490","DOI":"10.1038\/gim.2011.62","article-title":"Offering Aggregate Results to Participants in Genomic Research: Opportunities and Challenges","volume":"14","author":"Beskow L. M.","year":"2012","journal-title":"Genetics in Medicine"},{"key":"e_1_2_8_34_1","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1159\/000507057","article-title":"At a Moment's Notice: Community Advisory Board Perspectives on Biobank Communication to Supplement Broad Consent","volume":"23","author":"Meagher K. M.","year":"2020","journal-title":"Public Health Genomics"},{"key":"e_1_2_8_35_1","unstructured":"Beskowet al. \u201cOffering Aggregate Results to Participants in Genomic Research.\u201d"},{"key":"e_1_2_8_36_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41591-024-02948-1"},{"key":"e_1_2_8_37_1","unstructured":"National Institutes of Health \u201cClearly Communicating Research Results Across the Clinical Trials Continuum \u201d August 26 2016 https:\/\/www.nih.gov\/health-information\/nih-clinical-research-trials-you\/clearly-communicating-research-results-across-clinical-trials-continuum."},{"key":"e_1_2_8_38_1","unstructured":"Fernandez Kodish andWeijer \u201cInforming Study Participants of Research Results.\u201d"},{"key":"e_1_2_8_39_1","unstructured":"Schroteret al. \u201cFrequency and Format of Clinical Trial Results Dissemination to Patients.\u201d"},{"key":"e_1_2_8_40_1","unstructured":"Jorgenson Wolinetz andCollins \u201cIncentivizing a New Culture of Data Stewardship: The NIH Policy for Data Management and Sharing.\u201d"},{"key":"e_1_2_8_41_1","doi-asserted-by":"crossref","DOI":"10.17226\/26308","volume-title":"Developing a Toolkit for Fostering Open Science Practices: Proceedings of a Workshop","author":"Arrison T.","year":"2021"},{"key":"e_1_2_8_42_1","volume-title":"University of Maryland Department of Psychology Leads the Way in Aligning Open Science with Promotion & Tenure Guidelines","author":"HELIOS Open","year":"2022"}],"container-title":["Ethics &amp; Human Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/eahr.60009","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,7,14]],"date-time":"2025-07-14T18:08:56Z","timestamp":1752516536000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/eahr.60009"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,7]]},"references-count":41,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2025,7]]}},"alternative-id":["10.1002\/eahr.60009"],"URL":"https:\/\/doi.org\/10.1002\/eahr.60009","archive":["Portico"],"relation":{},"ISSN":["2578-2355","2578-2363"],"issn-type":[{"value":"2578-2355","type":"print"},{"value":"2578-2363","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,7]]},"assertion":[{"value":"2025-07-14","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}