{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T12:17:31Z","timestamp":1788524251195,"version":"build-2803163510"},"reference-count":25,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T00:00:00Z","timestamp":1788480000000},"content-version":"vor","delay-in-days":3,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T00:00:00Z","timestamp":1788220800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["UM1TR004927"],"award-info":[{"award-number":["UM1TR004927"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100016547","name":"School of Medicine, University of California, Irvine","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100016547","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Ethics &amp; Human Research"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>Public domain human genomic resources are infrastructure: tools researchers use to ask basic biological questions whose answers are then translated into products and care. Translational science now asks them to support an expanding set of tasks, including clinical variant interpretation for diverse populations, pharmacogenomic prescribing, polygenic risk prediction, and the training of clinical artificial intelligence. The corpus of public domain genomes, due in large part to upstream recruitment choices, is not fit for these purposes, and the gap between discovery and translation is widening. This essay argues that closing the gap requires treating public domain genomic infrastructure as a particular object of translational bioethics rather than a technical precondition for it. The limited number of genomes in the public domain relative to the broader genomic record, and the typology\u2010friendliness of how that record represents human variation, are two faces of the same set of upstream choices. Reversing them is not a matter of more sampling under existing terms; it is a matter of building infrastructure of a particular kind; infrastructure made from people. That category, common in genomics but absent from the rest of science, demands an ethical apparatus the field has not yet built. Here we consider the commitments such an apparatus requires, and argue that where, how, and with whom we build genomic infrastructure is itself an ethics question the field has largely declined to ask.<\/jats:p>","DOI":"10.1002\/eahr.70032","type":"journal-article","created":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T11:45:38Z","timestamp":1788522338000},"page":"46-53","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The Subtle Crisis: Public Domain Genomes and the Ethics of Translational Infrastructure"],"prefix":"10.1002","volume":"48","author":[{"suffix":"Jr.","given":"Jonathan Edward","family":"LoTempio","sequence":"first","affiliation":[{"name":"Assistant professor of pediatrics and biological chemistry and an associate director of translational bioethics at the School of Medicine at the University of California, Irvine"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,4]]},"reference":[{"issue":"5","key":"e_1_2_9_2_1","doi-asserted-by":"crossref","first-page":"849","DOI":"10.1101\/gr.213611.116","article-title":"Evaluation of GRCh38 and de novo haploid genome assemblies demonstrates the enduring quality of the reference assembly","volume":"27","author":"Schneider VA","year":"2017","journal-title":"Genome Res."},{"issue":"1","key":"e_1_2_9_3_1","doi-asserted-by":"crossref","first-page":"47","DOI":"10.31887\/DCNS.2010.12.1\/jlunshof","article-title":"Personal genomes in progress: from the Human Genome Project to the Personal Genome Project","volume":"12","author":"Lunshof JE","year":"2010","journal-title":"Dialogues Clin Neurosci."},{"key":"e_1_2_9_4_1","doi-asserted-by":"crossref","first-page":"2937","DOI":"10.1038\/s41588-025-02412-x","article-title":"Human Genome Diversity Project data use and implications for the governance of legacy genomic data","volume":"57","author":"Nelson SC","year":"2025","journal-title":"Nat Genet."},{"issue":"3","key":"e_1_2_9_5_1","doi-asserted-by":"crossref","first-page":"603","DOI":"10.1017\/jme.2022.99","article-title":"Expanding the role of bioethics in translational science","volume":"50","author":"Rothstein MA","year":"2022","journal-title":"J Law Med Ethics."},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/eahr.500167"},{"issue":"4","key":"e_1_2_9_7_1","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1136\/jme.2009.029785","article-title":"Translational ethics? The theory-practice gap in medical ethics","volume":"36","author":"Cribb A","year":"2010","journal-title":"J Med Ethics."},{"issue":"2","key":"e_1_2_9_8_1","doi-asserted-by":"crossref","first-page":"287","DOI":"10.1038\/s41588-024-02049-2","article-title":"Overcoming challenges associated with broad sharing of human genomic data","volume":"57","author":"LoTempio JE","year":"2025","journal-title":"Nat Genet."},{"issue":"7960","key":"e_1_2_9_9_1","doi-asserted-by":"crossref","first-page":"312","DOI":"10.1038\/s41586-023-05896-x","article-title":"A draft human pangenome reference","volume":"617","author":"Liao WW","year":"2023","journal-title":"Nature."},{"key":"e_1_2_9_10_1","doi-asserted-by":"crossref","unstructured":"LoTempioJEJr DonohueCR MorenoJD Cook-DeeganR. Ethics choices during the Human Genome Project reflected their policy world not ours.Cell Genom.2025;5. doi:10.1016\/j.xgen.2025.100841","DOI":"10.1016\/j.xgen.2025.100841"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1126\/scitranslmed.3002747"},{"issue":"5","key":"e_1_2_9_12_1","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1038\/gim.2015.30","article-title":"Standards and guidelines for the interpretation of sequence variants: a joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology","volume":"17","author":"Richards S","year":"2015","journal-title":"Genet Med."},{"issue":"4","key":"e_1_2_9_13_1","doi-asserted-by":"crossref","first-page":"584","DOI":"10.1038\/s41588-019-0379-x","article-title":"Clinical use of current polygenic risk scores may exacerbate health disparities","volume":"51","author":"Martin AR","year":"2019","journal-title":"Nat Genet."},{"issue":"7624","key":"e_1_2_9_14_1","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1038\/538161a","article-title":"Genomics is failing on diversity","volume":"538","author":"Popejoy AB","year":"2016","journal-title":"Nature."},{"key":"e_1_2_9_15_1","volume-title":"Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field","author":"National Academies of Sciences, Engineering, and Medicine","year":"2023"},{"issue":"4","key":"e_1_2_9_16_1","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1002\/eahr.60028","article-title":"Reconsidering open-ended consent for biospecimen and health record research in the United States and Europe","volume":"47","author":"Rothstein MA","year":"2025","journal-title":"Ethics Hum Res."},{"issue":"12","key":"e_1_2_9_17_1","doi-asserted-by":"crossref","first-page":"2933","DOI":"10.1038\/s41588-025-02423-8","article-title":"Impact of the 23andMe bankruptcy on preserving the public benefit of scientific data","volume":"57","author":"LoTempio JE","year":"2025","journal-title":"Nat Genet."},{"key":"e_1_2_9_18_1","unstructured":"23andMe.TTAM Research Institute a nonprofit public benefit corporation completes the acquisition of 23andMe assets. Press release. July 14 2025.https:\/\/mediacenter.23andme.com\/press-releases\/ttam-research-institute-nonprofit-public-benefit-corporation\/"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2024.2303302"},{"issue":"3","key":"e_1_2_9_20_1","doi-asserted-by":"crossref","first-page":"40","DOI":"10.1002\/eahr.60023","article-title":"Equitable data sharing in collaborative health research in sub-Saharan Africa: a translational bioethics perspective","volume":"47","author":"Andanda P","year":"2025","journal-title":"Ethics Hum Res."},{"issue":"4","key":"e_1_2_9_21_1","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1002\/eahr.500175","article-title":"Translational bioethics and public input","volume":"45","author":"Evans JH","year":"2023","journal-title":"Ethics Hum Res."},{"issue":"4","key":"e_1_2_9_22_1","doi-asserted-by":"crossref","first-page":"47","DOI":"10.1002\/eahr.500218","article-title":"Translational bioethical decision-making: human brain organoids as a case study","volume":"46","author":"Evans JH","year":"2024","journal-title":"Ethics Hum Res."},{"issue":"6705","key":"e_1_2_9_23_1","doi-asserted-by":"crossref","first-page":"150","DOI":"10.1126\/science.adp6277","article-title":"International scope of biomedical research ethics review","volume":"385","author":"Rothstein MA","year":"2024","journal-title":"Science."},{"key":"e_1_2_9_24_1","unstructured":"World MedicalAssociation.WMA Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Participants. Amended by the 75th WMA General Assembly Helsinki. October2024."},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1002\/eahr.60035"},{"key":"e_1_2_9_26_1","doi-asserted-by":"crossref","unstructured":"MascalzoniD MelottiR PattaroC et al. Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process.Eur J Hum Genet. doi:10.1038\/s41431-022-01160-4","DOI":"10.1038\/s41431-022-01160-4"}],"container-title":["Ethics &amp; Human Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/eahr.70032","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/eahr.70032","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/eahr.70032","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T11:45:48Z","timestamp":1788522348000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/eahr.70032"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9]]},"references-count":25,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2026,9]]}},"alternative-id":["10.1002\/eahr.70032"],"URL":"https:\/\/doi.org\/10.1002\/eahr.70032","archive":["Portico"],"relation":{},"ISSN":["2578-2355","2578-2363"],"issn-type":[{"value":"2578-2355","type":"print"},{"value":"2578-2363","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9]]},"assertion":[{"value":"2026-09-04","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}