{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T18:55:06Z","timestamp":1783018506411,"version":"3.54.6"},"reference-count":46,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T00:00:00Z","timestamp":1782950400000},"content-version":"vor","delay-in-days":1,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000052","name":"NIH Office of the Director","doi-asserted-by":"publisher","award":["R21HG010531"],"award-info":[{"award-number":["R21HG010531"]}],"id":[{"id":"10.13039\/100000052","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Ethics &amp;amp; Human Research"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>\n                    It is important to know what motivates people, especially from groups underrepresented in biomedical research, to accept or decline participation in research studies. With this information, engagement strategies, incentives to participate, and benefits of participation can be aligned with what potential research participants value and expect from participating in research. Our project sought to identify what motivated people recruited at a Federally Qualified Health Center (FQHC) to enroll, or not, in the\n                    <jats:italic>All of Us<\/jats:italic>\n                    Research Program (AoU). Qualitative interviews revealed that the most common motivator was the prospect of learning information about their health, especially genetic information that might indicate inherited disease or disease risk, and opportunities for disease prevention. However, our research also revealed that the low\u2010income, medically underserved people typically served by FQHCs face myriad financial, social, and political barriers to reaping the potential health benefits of knowing genetic health information. There is currently a misalignment between what motivates actual and potential research participants to enroll in AoU and the ability of low\u2010income, medically underserved people to use genetic research results to benefit their health. Whether or not learning genetic research results leads to improved health outcomes should be approached as a question rather than an assumption. Embedding research within an unequal society remains a barrier to aligning research participants\u2019 motivations with the benefits that participation in research can deliver.\n                  <\/jats:p>","DOI":"10.1002\/eahr.70019","type":"journal-article","created":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T17:47:52Z","timestamp":1783014472000},"page":"6-19","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Misaligned Expectations: Motivations of Medically Underserved People to Enroll in the\n                    <i>All of Us<\/i>\n                    Research Program"],"prefix":"10.1002","volume":"48","author":[{"given":"Carolyn P.","family":"Neuhaus","sequence":"first","affiliation":[{"name":"Research scholar at The Hastings Center for Bioethics"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danielle","family":"Pacia","sequence":"additional","affiliation":[{"name":"Student at Yale Law School"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Camila","family":"Salvagno","sequence":"additional","affiliation":[{"name":"Constituent engagement manager for Undue Medical Debt"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johanna T.","family":"Crane","sequence":"additional","affiliation":[{"name":"Professor in the Alden March Bioethics Institute at Albany Medical College"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,2]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/humu.23644"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.amepre.2020.08.019"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1080\/14636778.2022.2115349"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.13016\/NGQO-D91Q"},{"key":"e_1_2_8_6_1","doi-asserted-by":"crossref","DOI":"10.1515\/9780804786737","volume-title":"People's Science: Bodies and Rights on the Stem Cell Frontier","author":"Benjamin R","year":"2013"},{"key":"e_1_2_8_7_1","doi-asserted-by":"crossref","DOI":"10.7208\/chicago\/9780226213118.001.0001","volume-title":"Inclusion: The Politics of Difference in Medical Research","author":"Epstein S","year":"2007"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-013-0154-0"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2013.301706"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-011-0052-2"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0234962"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/475163a"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1038\/538161a"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1177\/030631201031003002"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1080\/09505430601180847"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1186\/gb-2008-9-7-404"},{"key":"e_1_2_8_17_1","doi-asserted-by":"crossref","DOI":"10.5749\/minnesota\/9780816665853.001.0001","volume-title":"Native American DNA: Tribal Belonging and the False Promise of Genetic Science","author":"TallBear K","year":"2013"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/hast.1151"},{"key":"e_1_2_8_19_1","doi-asserted-by":"crossref","unstructured":"KozlovM. \u2018All of Us\u2019 genetics chart stirs unease over controversial depiction of race.Nature News. February 23 2024.https:\/\/www.nature.com\/articles\/d41586-024-00568-w","DOI":"10.1038\/d41586-024-00568-w"},{"key":"e_1_2_8_20_1","unstructured":"OrtegaRP. Race ethnicity don't match genetic ancestry according to a large U.S. study.Science. June 5 2025.https:\/\/www.science.org\/content\/article\/race-ethnicity-don-t-match-genetic-ancestry-according-large-u-s-study"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/cts.12150"},{"key":"e_1_2_8_22_1","unstructured":"MasselliM Shin P.How many patients do Community Health Centers really care for?You'll be surprised! Moses\/Weitzman Health System & National Association of Community Health Centers. August2025.https:\/\/www.mwhs1.com\/wp-content\/uploads\/2025\/08\/The-Real-CHC-Patient-Base_080525_final.pdf"},{"key":"e_1_2_8_23_1","volume-title":"Geiger Gibson Program in Community Health","author":"Regenstein M","year":"2025"},{"key":"e_1_2_8_24_1","volume-title":"Born and Made: An Ethnography of Preimplantation Genetic Diagnosis","author":"Franklin S","year":"2006"},{"key":"e_1_2_8_25_1","unstructured":"National Institutes of HealthAll of UsResearch Program.DNA and research. Accessed September 2 2025.https:\/\/www.joinallofus.org\/DNA-and-Research"},{"key":"e_1_2_8_26_1","doi-asserted-by":"crossref","DOI":"10.4135\/9781452230153","volume-title":"Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory","author":"Corbin JM","year":"2008"},{"key":"e_1_2_8_27_1","volume-title":"Qualitative Data Analysis: An Expanded Sourcebook","author":"Miles MB","year":"1994"},{"key":"e_1_2_8_28_1","unstructured":"National Institutes of HealthAll of UsResearch Program.Why diversity in health research is important: the dish 2019. Accessed October 15 2024.https:\/\/web.archive.org\/web\/20241106080250\/https:\/\/allofus.nih.gov\/about\/diversity-and-inclusion"},{"key":"e_1_2_8_29_1","unstructured":"National Institutes of HealthAll of UsResearch Program.Diversity fact sheet. Accessed October 15 2024.https:\/\/web.archive.org\/web\/20241009091317mp_\/https:\/\/allofus.nih.gov\/sites\/default\/files\/Diversity%20Fact%20Sheet%20%E2%80%93%20Web%20Version_0.pdf"},{"key":"e_1_2_8_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/jan.13818"},{"key":"e_1_2_8_31_1","doi-asserted-by":"publisher","DOI":"10.1093\/jamia\/ocad021"},{"key":"e_1_2_8_32_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2018.05046"},{"key":"e_1_2_8_33_1","unstructured":"National Institutes of HealthAll of UsResearch Program.Participation. Accessed October 12 2024.https:\/\/allofus.nih.gov\/get-involved\/participation"},{"issue":"5","key":"e_1_2_8_34_1","doi-asserted-by":"crossref","first-page":"894","DOI":"10.1016\/j.ajhg.2021.04.002","article-title":"Engagement and return of results preferences among a primarily African American genomic sequencing cohort","volume":"108","author":"Lewis KL","year":"2021","journal-title":"Am J Hum Genet."},{"key":"e_1_2_8_35_1","doi-asserted-by":"publisher","DOI":"10.1146\/annurev-genom-101122-103209"},{"key":"e_1_2_8_36_1","doi-asserted-by":"publisher","DOI":"10.3390\/jpm13040615"},{"key":"e_1_2_8_37_1","doi-asserted-by":"publisher","DOI":"10.1093\/jamia\/ocae207"},{"key":"e_1_2_8_38_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.i1102."},{"key":"e_1_2_8_39_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2016.12260"},{"key":"e_1_2_8_40_1","doi-asserted-by":"publisher","DOI":"10.1080\/23294515.2023.2279965"},{"key":"e_1_2_8_41_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamainternmed.2024.1881"},{"key":"e_1_2_8_42_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.gim.2025.101457"},{"issue":"4","key":"e_1_2_8_43_1","doi-asserted-by":"crossref","first-page":"678","DOI":"10.1016\/j.ajhg.2026.02.016","article-title":"Return of genome-informed risk-assessment results for common conditions to 23,840 adults and children: an eMERGE network study","volume":"113","author":"Lawson LP","year":"2026","journal-title":"Am J Hum Genet."},{"key":"e_1_2_8_44_1","doi-asserted-by":"publisher","DOI":"10.1002\/hast.1511"},{"issue":"3","key":"e_1_2_8_45_1","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1353\/arw.0.0084","article-title":"Research, therapy, and bioethical hegemony: the controversy over perinatal AZT trials in Africa","volume":"51","author":"Wendland C","year":"2008","journal-title":"Afr Stud Rev."},{"key":"e_1_2_8_46_1","doi-asserted-by":"publisher","DOI":"10.1080\/17441692.2016.1211162"},{"issue":"1","key":"e_1_2_8_47_1","first-page":"S62","article-title":"Does solidarity require \u2018All of Us\u2019 to participate in genomics research?","volume":"50","author":"Neuhaus CP","year":"2020","journal-title":"Hastings Cent Rep."}],"container-title":["Ethics &amp; Human Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/eahr.70019","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/eahr.70019","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/eahr.70019","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T17:48:09Z","timestamp":1783014489000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/eahr.70019"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7]]},"references-count":46,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2026,7]]}},"alternative-id":["10.1002\/eahr.70019"],"URL":"https:\/\/doi.org\/10.1002\/eahr.70019","archive":["Portico"],"relation":{},"ISSN":["2578-2355","2578-2363"],"issn-type":[{"value":"2578-2355","type":"print"},{"value":"2578-2363","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7]]},"assertion":[{"value":"2026-07-02","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}