«If you give them your little finger, they’ll tear off your entire arm»: losing trust in biobank research
| Autor: | Lars Øystein Ursin, Erik Christensen, John-Arne Skolbekken, Borgunn Ytterhus |
|---|---|
| Jazyk: | angličtina |
| Rok vydání: | 2020 |
| Předmět: |
Male
Health (social science) Biomedical Research Alienation media_common.quotation_subject Confidence Medical law 0603 philosophy ethics and religion Trust Education Medisinske Fag: 700::Helsefag: 800::Medisinsk/odontologisk etikk atferdsfag historie: 805 [VDP] 03 medical and health sciences Informed consent Institution Relevance (law) Humans Sociology media_common Biological Specimen Banks Ethics 0303 health sciences Motivation Informed Consent business.industry Health Policy 030305 genetics & heredity 06 humanities and the arts Public relations Scientific Contribution Consent withdrawal Focus Groups Biobank Focus group Humaniora: 000::Filosofiske fag: 160::Etikk: 164 [VDP] Philosophy of medicine Female 060301 applied ethics business Confidentiality |
| Zdroj: | Medicine, Health Care, and Philosophy Medicine, Health Care and Philosophy Medicine, Health care and Philosophy |
| ISSN: | 1572-8633 1386-7423 |
| Popis: | Why do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16 years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisiting these interviews today reveals a remarkable relevance to present concerns, since the possible developments that worried ex-participants and participants 16 years ago now are becoming realities. Drawing on conceptual distinctions by sociologist and philosopher Niklas Luhmann, we argue that while ex-participants express a loss of trust in the biobank institution to manage the use of their biobank material in a legitimate way, remaining participants expressed confidence in the management of the biobank institution to secure their interests. This analysis brings out important aspects of emerging trends in biobank research participation. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. |
| Databáze: | OpenAIRE |
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