{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,10]],"date-time":"2026-01-10T08:55:41Z","timestamp":1768035341081,"version":"3.49.0"},"reference-count":25,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2019,3,20]],"date-time":"2019-03-20T00:00:00Z","timestamp":1553040000000},"content-version":"vor","delay-in-days":19,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Ethics &amp; Human Research"],"published-print":{"date-parts":[[2019,3]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:p>Contrary to the revised Common Rule, and contrary to the views of many bioethicists and researchers, we argue that broad consent should be sought for anticipated later research uses of deidentified biospecimens and health information collected during medical care. Individuals differ in the kinds of risk they find concerning and in their willingness to permit use of their biospecimens for future research. For this reason, asking their permission for unspecified research uses is a fundamental expression of respect for them as persons and should be done absent some compelling moral consideration to the contrary. We examine three moral considerations and argue that each of them fails: that there is a duty of easy rescue binding on all, that seeking consent creates a selection bias that undermines the validity of biospecimen research, and that seeking and documenting consent will be prohibitively expensive.<\/jats:p>","DOI":"10.1002\/eahr.500009","type":"journal-article","created":{"date-parts":[[2019,3,21]],"date-time":"2019-03-21T06:01:51Z","timestamp":1553148111000},"page":"22-28","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Human Biospecimens Come from People"],"prefix":"10.1002","volume":"41","author":[{"given":"Tom","family":"Tomlinson","sequence":"first","affiliation":[{"name":"Professor at the Center for Ethics and Humanities in the Life Sciences at Michigan State University"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Raymond G.","family":"De Vries","sequence":"additional","affiliation":[{"name":"Professor at the Center for Bioethics and Social Sciences in Medicine at the University of Michigan"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2019,3,20]]},"reference":[{"key":"e_1_2_8_2_1","unstructured":"\u201cFederal Policy for the Protection of Human Subjects \u201d Fed. Reg. (January 19 2017) https:\/\/www.federalregister.gov\/documents\/2017\/01\/19\/2017-01058\/federal-policy-for-the-protection-of-human-subjects#h-3."},{"key":"e_1_2_8_3_1","volume-title":"The Immortal Life of Henrietta Lacks","author":"Skloot R.","year":"2011"},{"key":"e_1_2_8_4_1","unstructured":"Council on Governmental Relations \u201cAnalysis of Public Comments on the Common Rule NPRM \u201d2016 https:\/\/tinyurl.com\/ydddtxkj."},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/hast.697"},{"key":"e_1_2_8_6_1","unstructured":"Given the position we argue for it\u2019s difficult to settle on the right term for referring to those whose materials are being used. \u201cSources\u201d is ambiguous between human and nonhuman sources and so obscures the person from whom materials were obtained. \u201cParticipants\u201d is misleading since after the data and specimens are generated there is no more participation. \u201cDonor\u201d may subtly beg the question by suggesting that the person chose to provide materials. But since we think that is whatshouldhappen \u201cdonor\u201d is the term we will employ."},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/hast.115"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1126\/science.1229566"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2013.59"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-015-0053-5"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40504-016-0036-4"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e31821d2f88"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1098\/rsta.2016.0130"},{"key":"e_1_2_8_14_1","first-page":"229","article-title":"Famine, Affluence and Morality","volume":"1","author":"Singer P.","year":"1972","journal-title":"Philosophy and Public Affairs"},{"key":"e_1_2_8_15_1","unstructured":"Porsdam-Mann Savulescu andSahakian \u201cFacilitating the Ethical Use of Health Data for the Benefit of Society \u201d 6."},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1086\/292379"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-017-0308-6"},{"key":"e_1_2_8_18_1","unstructured":"For example seeLynchandMeyer \u201cRegulating Research with Biospecimens under the Revised Common Rule \u201d 4."},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.b866"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2013.767955"},{"key":"e_1_2_8_21_1","doi-asserted-by":"crossref","unstructured":"Cohnet al. \u201cSelf-Reported Race and Ethnicity of US Biobank Participants Compared to the US Census \u201d229.","DOI":"10.1007\/s12687-017-0308-6"},{"key":"e_1_2_8_22_1","unstructured":"Riveraet al. \u201cCTSA Institution Responses to Proposed Common Rule Changes \u201d 82."},{"key":"e_1_2_8_23_1","unstructured":"Glimcher L. H. \u201cHow Not to End Cancer in Our Lifetimes \u201dWall Street Journal April 4 2016; Secretary\u2019s Advisory Committee on Human Research Protections \u201cExtensive Resources Necessary to Obtain and Track Consent for De-identified Biospecimens \u201d section in \u201cAttachment A: Recommendations NPRM \u201d Office for Human Research Protections content last reviewed March 9 2016 https:\/\/www.hhs.gov\/ohrp\/sachrp-committee\/recommendations\/2016-january-5-recommendation-nprm-attachment-a."},{"key":"e_1_2_8_24_1","unstructured":"\u201cBioVu Consent Form \u201d Vanderbilt University Medical Center Institute for Clinical and Translational Research January 14 2019 https:\/\/victr.vanderbilt.edu\/pub\/biovu\/?sid=220."},{"key":"e_1_2_8_25_1","unstructured":"BioIVT https:\/\/www.bioivt.com\/."},{"key":"e_1_2_8_26_1","unstructured":"Ornstein C. andK.Thomas \u201cSloan Kettering\u2019s Cozy Deal with Start-Up Ignites a New Uproar \u201dNew York Times September 20 2018."}],"container-title":["Ethics &amp; Human Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Feahr.500009","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/eahr.500009","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/eahr.500009","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/eahr.500009","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,11]],"date-time":"2023-09-11T11:30:42Z","timestamp":1694431842000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/eahr.500009"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,3]]},"references-count":25,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2019,3]]}},"alternative-id":["10.1002\/eahr.500009"],"URL":"https:\/\/doi.org\/10.1002\/eahr.500009","archive":["Portico"],"relation":{},"ISSN":["2578-2355","2578-2363"],"issn-type":[{"value":"2578-2355","type":"print"},{"value":"2578-2363","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,3]]},"assertion":[{"value":"2019-03-20","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}