The evolution of withdrawal: negotiating research relationships in biobanking
The right to withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nuremburg code of ethical safeguards in biomedical research on human participants. As biomedical research moves away from direct interventional studies towards research using net...
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| Published in | Life sciences, society and policy Vol. 10; no. 1; pp. 16 - 13 |
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| Main Authors | , , , , , |
| Format | Journal Article |
| Language | English |
| Published |
Berlin/Heidelberg
Springer Berlin Heidelberg
05.10.2014
Springer Nature B.V |
| Subjects | |
| Online Access | Get full text |
| ISSN | 2195-7819 2195-7819 |
| DOI | 10.1186/s40504-014-0016-5 |
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| Abstract | The right to withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nuremburg code of ethical safeguards in biomedical research on human participants. As biomedical research moves away from direct interventional studies towards research using networks of linked human tissue samples and data, however, questions arise about what withdrawal can and should mean in these new contexts. Some of the more expansive traditional understandings, such as the right to withdraw from a study `at any time' are limited in practice by the nature of biobank- supported research, particularly where it makes possible widespread dissemination and ongoing reuse of data. It is time for a more nuanced, granular arrangement for withdrawal, appropriate to the ongoing relationships between participants and long-term biobanking enterprises. |
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| AbstractList | The right to withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nuremburg code of ethical safeguards in biomedical research on human participants. As biomedical research moves away from direct interventional studies towards research using networks of linked human tissue samples and data, however, questions arise about what withdrawal can and should mean in these new contexts. Some of the more expansive traditional understandings, such as the right to withdraw from a study ‘at any time’ are limited in practice by the nature of biobank- supported research, particularly where it makes possible widespread dissemination and ongoing reuse of data. It is time for a more nuanced, granular arrangement for withdrawal, appropriate to the ongoing relationships between participants and long-term biobanking enterprises. |
| ArticleNumber | 16 |
| Author | Mitchell, Colin Melham, Karen Teare, Harriet Moraia, Linda Briceno Morrison, Michael Kaye, Jane |
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| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/26573981$$D View this record in MEDLINE/PubMed |
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| Cites_doi | 10.1016/S1470-2045(07)70381-9 10.1515/9780691214511 10.1258/147775006777254524 10.1163/157180908X338269 10.1353/ken.2010.a413517 10.1071/HC13259 10.1111/j.1467-8519.2008.00666.x 10.1159/000336671 10.1007/s40142-013-0014-6 10.1089/gtmb.2013.1550 10.1111/j.1467-9566.2011.01342.x 10.1159/000319473 10.1038/jhg.2011.19 10.1007/s10728-011-0194-8 10.1007/s00439-011-1063-0 10.1038/sj.ejhg.5201458 10.1111/j.1467-8519.2005.00429.x 10.1038/nrg3218 10.1016/j.socscimed.2008.11.020 10.1038/nmeth.2142 10.1007/s11019-005-0397-6 |
| ContentType | Journal Article |
| Copyright | Melham et al.; licensee Springer. 2014. This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Author(s) 2014 Melham et al.; licensee Springer. 2014 |
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| Keywords | Research ethics Consent to governance Right to withdraw Biobank |
| Language | English |
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| References_xml | – reference: MeslinEMChoMKResearch ethics in the Era of personalized medicine: updating Science's contract with societyPublic Health Genomics2010133788410.1159/000319473 – reference: KayeJCurrenLAndersonNEdwardsKFullertonSKanellopoulouNLundDMacArthurDMascalzoniDShepherdJTaylorPTerrySWinterSFrom patients to partners: participant-centric initiatives in biomedical researchNature Reviews Genetics2012135371610.1038/nrg3218 – reference: CorriganOTuttonRWhat's in a name? Subjects, volunteers, participants and activists in clinical researchClinical Ethics2006110110410.1258/147775006777254524 – reference: WatanabeMInoueYChangCFHongHKobayashiISuzukiSMutoKFor what am I participating? The need for communication after receiving consent from biobanking project participants: experience in JapanJournal of Human Genetics2011563586310.1038/jhg.2011.19 – reference: MasterZNelsonEMurdochBCaulfieldTBiobanks, consent and claims of consensusNature Methods20129885810.1038/nmeth.2142 – reference: HolmSWithdrawing from research: a rethink in the context of research biobanksHealth Care Analysis201119326928110.1007/s10728-011-0194-8 – reference: HobbsAStarkbaumJGottweisUWichmannHEGottweisHThe privacy-reciprocity connection in biobanking: comparing German with UK strategiesPublic Health Genomics2012152728410.1159/000336671 – reference: SchaeferGOWertheimerAThe right to withdraw from researchKennedy Institute of Ethics Journal2010204329352 – reference: ErikssonSHelgessonGPotential harms, anonymization, and the right to withdraw consent to biobank researchEuropean Journal of Human Genetics2005131071107610.1038/sj.ejhg.5201458 – reference: Gottweis, HG, G Gaskell, and J Starkbaum. 2011. Connecting the public with biobank research: reciprocity matters. Nature Reviews Genetics 12:2. Gottweis, HG, G Gaskell, and J Starkbaum. 2011. Connecting the public with biobank research: reciprocity matters. 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| Title | The evolution of withdrawal: negotiating research relationships in biobanking |
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