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Biobank Research: Individual Rights and Public Benefit
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
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 [en]
Biobank, Ethics, Consent, Returning results, Individual rights, Public good
National Category
Medical Ethics
Research subject
Medical Science
Identifiers
URN: urn:nbn:se:uu:diva-171898ISBN: 978-91-554-8332-6 (print)OAI: oai:DiVA.org:uu-171898DiVA: diva2:512778
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
List of papers
1. Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results
Open this publication in new window or tab >>Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results
2009 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 17, no 12, 1544-1549 p.Article in journal (Refereed) Published
Abstract [en]

During the past decade, various guidelines that imply a duty for researchers to disclose information obtained through research to participants have emerged. The character and extent of this obligation have been debated extensively, with much attention devoted to the decisiveness of the validity and utility of the results in question. The aim of this paper is to argue that individual results from research on materials stored in large-scale biobanks, consisting of samples taken within the healthcare system or of altruistically donated materials, should not be returned. We will defend the thesis that medical research on these biobanks should be viewed as a collective project to improve public health, and that available resources should be utilized to pursue this goal. We argue that there is a need for a change of perspectives. Medical research should not primarily be viewed as a danger that individuals must be protected from, but rather be recognized as constituting a necessary defense against current and future diseases. Research that bears the prospect of advancing medicine and that can be carried out at no risk to individuals should be endorsed and facilitated. This calls for a shift of focus from autonomy and individual rights toward collective responsibility and solidarity.

Keyword
biobanks, returning results, solidarity, public health, altruism
National Category
Medical and Health Sciences
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-120631 (URN)10.1038/ejhg.2009.87 (DOI)000271911700004 ()19471310 (PubMedID)
Available from: 2010-03-15 Created: 2010-03-15 Last updated: 2017-03-30
2. Changing defaults in biobank research could save lives too
Open this publication in new window or tab >>Changing defaults in biobank research could save lives too
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.

Keyword
Biobank, Consent, Ethics, Organ donation
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-120633 (URN)10.1007/s10654-009-9413-0 (DOI)000274461600001 ()19957020 (PubMedID)
Available from: 2010-03-15 Created: 2010-03-15 Last updated: 2017-03-30
3. Biobank research: who benefits from individual consent?
Open this publication in new window or tab >>Biobank research: who benefits from individual consent?
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.

Keyword
Biobanks, informed consent, human rights, public good, Biobanker, informerat samtycke, rättigheter, allmänintresse
National Category
Ethics
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-164607 (URN)10.1136/bmj.d5647 (DOI)000295779300002 ()21972296 (PubMedID)
Available from: 2011-12-21 Created: 2011-12-21 Last updated: 2017-12-08
4. Why participating in (certain) scientific research is a moral duty
Open this publication in new window or tab >>Why participating in (certain) scientific research is a moral duty
2014 (English)In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 40, no 5, 325-328 p.Article in journal (Refereed) Published
Abstract [en]

Our starting point in this article is the debate between John Harris and Iain Brassington on whether or not there is a duty to take part in scientific research. We consider the arguments that have been put forward based on fairness and a duty to rescue, and suggest an alternative justification grounded in a hypothetical agreement: that is, because effective healthcare cannot be taken for granted, but requires continuous medical research, and nobody knows what kind of healthcare they will need, participating in research should be viewed from the perspective of a social contract, based on our mutual need for medical advances.

National Category
Medical Ethics
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-171897 (URN)10.1136/medethics-2012-100859 (DOI)000334614100010 ()
Available from: 2012-03-28 Created: 2012-03-28 Last updated: 2017-12-07

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