«If you give them your little finger, they’ll tear off your entire arm»: losing trust in biobank research

Medicine, Health Care and Philosophy 23 (4):565-576 (2020)
  Copy   BIBTEX

Abstract

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.

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 92,323

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Building on relationships of trust in biobank research.M. G. Hansson - 2005 - Journal of Medical Ethics 31 (7):415-418.
Biobank research and the right to privacy.Lars Øystein Ursin - 2008 - Theoretical Medicine and Bioethics 29 (4):267-285.
The Right to Withdraw Consent to Research on Biobank Samples.Gert Helgesson & Linus Johnsson - 2005 - Medicine, Health Care and Philosophy 8 (3):315-321.
Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.
Biobanks--When is Re-consent Necessary?K. S. Steinsbekk & B. Solberg - 2011 - Public Health Ethics 4 (3):236-250.
Partnership in U.K. Biobank: A Third Way for Genomic Property?David E. Winickoff - 2007 - Journal of Law, Medicine and Ethics 35 (3):440-456.

Analytics

Added to PP
2020-07-31

Downloads
18 (#837,580)

6 months
10 (#277,276)

Historical graph of downloads
How can I increase my downloads?