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Biobank research: who benefits from individual consent?
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-7486-4678
2011 (English)In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 343, no Oct 4, d5647- p.Article in journal (Refereed) Published
Abstract [en]

Requiring informed consent for research on stored tissue samples and associated data safeguards the autonomy rights of donors. But Joanna Stjernschantz Forsberg, Mats Hansson, and Stefan Eriksson argue that this policy not only defeats the interest of society but also runs counter to the interests of the individuals it purports to protect.

Place, publisher, year, edition, pages
2011. Vol. 343, no Oct 4, d5647- p.
Keyword [en]
Biobanks, informed consent, human rights, public good
Keyword [sv]
Biobanker, informerat samtycke, rättigheter, allmänintresse
National Category
Ethics
Research subject
Bioethics
Identifiers
URN: urn:nbn:se:uu:diva-164607DOI: 10.1136/bmj.d5647ISI: 000295779300002PubMedID: 21972296OAI: oai:DiVA.org:uu-164607DiVA: diva2:468656
Available from: 2011-12-21 Created: 2011-12-21 Last updated: 2017-12-08
In thesis
1. Biobank Research: Individual Rights and Public Benefit
Open this publication in new window or tab >>Biobank Research: Individual Rights and Public Benefit
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis is to investigate the relationship between individuals and society in the context of healthcare and medical research, more specifically concerning the rights and duties of individuals in regard to biobank-based research. My starting point is that we all have a strong vested interest in improved healthcare, and therefore the possibilities to conduct important research should be optimized. In the first article, I investigate whether individual results from research using samples in large-scale biobanks should be returned. I conclude that there is good reason not to implement such policies, and instead to allocate available resources to pursuing medical advances. In the second article, I compare consent for using stored samples in research with consent for organ donation, whereby many countries have adopted opt-out strategies in order to increase the number of organs available. I claim that the default position should be changed in biobank research as well, i.e. it should be presumed that individuals want to contribute rather than that they do not. In the third article, I argue that safeguarding autonomy by requiring informed consent for using samples in research not only defeats the interests of society but also runs counter to the interests of the individuals the policy purports to protect. Finally, in the fourth article I suggest that it is reasonable to view participation in medical research from the perspective of a social contract, built on our mutual need for medical advances, and that this implies that there is a moral duty to adhere to the contract by allowing one’s samples to be used in research. A central conclusion in this thesis is that biobank research should be viewed as a natural part of healthcare, like quality control, method development and teaching, and that as such, it ought to be endorsed and facilitated.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2012. 83 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 762
Keyword
Biobank, Ethics, Consent, Returning results, Individual rights, Public good
National Category
Medical Ethics
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-171898 (URN)978-91-554-8332-6 (ISBN)
Public defence
2012-10-06, Auditoriet Minus, Gustavianum, Akademigatan 3, Uppsala, 13:15 (English)
Opponent
Supervisors
Available from: 2012-09-14 Created: 2012-03-28 Last updated: 2013-01-17Bibliographically approved

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Stjernschantz Forsberg, JoannaHansson, Mats G.Eriksson, Stefan

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