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We're not in it for the money - lay people's moral intuitions on commercial use of 'their' biobank

Steinsbekk, Kristin Solum; Ursin, Lars Øystein; Skolbekken, John-Arne; Solberg, Berge
Journal article, Peer reviewed
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URI
http://hdl.handle.net/11250/280172
Date
2013
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  • Institutt for filosofi og religionsvitenskap [256]
  • Institutt for samfunnsmedisin og sykepleie [1768]
  • Institutt for sosialt arbeid [484]
  • Publikasjoner fra CRIStin - NTNU [20955]
Original version
Medicine, Health care and Philosophy 2013, 16(2):151-162   10.1007/s11019-011-9353-9
Abstract
Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing.
Description
- This article is published with open access at Springerlink.com
Journal
Medicine, Health care and Philosophy

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