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Changing defaults in biobank research could save lives too
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
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2010 (English)In: European Journal of Epidemiology, ISSN 0393-2990, E-ISSN 1573-7284, Vol. 25, no 2, 65-68 p.Article in journal, Editorial material (Refereed) Published
Abstract [en]

In an effort to increase the amount of organs available for transplantation, many countries have implemented presumed consent for organ donation. Presuming a wish to contribute to medical advances through biobank research on previously taken tissue samples could similarly improve health and wellbeing. In this article we analyze common arguments for and against presumed consent for organ donation and assess their relevance in the context of biobank research. In spite of obvious differences between biobank research and organ transplantation the cases for implementing presumption of a positive attitude appear quite analogous. It has repeatedly been shown that a majority of the general population supports these projects and selecting informed consent as the default position decreases the amount of organs and samples available and thus reduces the prospect of promoting health. We conclude that instead of presuming that individuals do not wish to contribute to the advancement of healthcare through biobank research on previously taken samples, ethics committees should presume that they do.

Place, publisher, year, edition, pages
2010. Vol. 25, no 2, 65-68 p.
Keyword [en]
Biobank, Consent, Ethics, Organ donation
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-120633DOI: 10.1007/s10654-009-9413-0ISI: 000274461600001PubMedID: 19957020OAI: oai:DiVA.org:uu-120633DiVA: diva2:303728
Available from: 2010-03-15 Created: 2010-03-15 Last updated: 2017-03-30
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, JoannaEriksson, StefanHansson, Mats G

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