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Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study
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. (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.
2008 (English)In: BMJ. British Medical Journal (International Ed.), ISSN 0959-8146, E-ISSN 1468-5833, Vol. 337, no 7663, a345- p.Article in journal (Refereed) Published
Abstract [en]


To estimate how many people object to storage of biological samples collected in health care in Sweden and to their use in research and how many withdraw previous consent.


Cross sectional study of register data.


Biobanks used in Swedish health care, 2005-6.


Data on refusal to consent were obtained for 1.4 million biobank samples per year from 20 of 21 counties.

Main outcome measures

Rates of preliminary refusal to consent, confirmed refusal, and withdrawal of consent.


Patients refused consent to either storage or use of their samples in about 1 in 690 cases, about 1 in 1600 confirmed their decision by completing a dissent form. Rather than having the samples destroyed, about 1 in 6200 patients wanted to restrict their use. Of those who had previously consented, about 1 in 19 000 withdrew their consent.


Refusal to consent to biobank research in Sweden is rare, and the interests of individuals and research interests need not be at odds. The Swedish healthcare organisation is currently obliged to obtain either consent or refusal to each potential use of each sample taken, and tack of consent to research is used as the default position. A system of presumed consent with straightforward opt out;would correspond with people's attitudes, as expressed in their actions, towards biobank research.

Place, publisher, year, edition, pages
2008. Vol. 337, no 7663, a345- p.
Keyword [en]
Cross-Sectional Studies, Female, Humans, Informed Consent, Male, Refusal to Participate, Sweden, Tissue Banks, Tissue and Organ Procurement
National Category
Medical and Health Sciences
URN: urn:nbn:se:uu:diva-17702DOI: 10.1136/bmj.a345ISI: 000258273000041PubMedID: 18617496OAI: oai:DiVA.org:uu-17702DiVA: diva2:45473
Available from: 2008-12-16 Created: 2008-12-16 Last updated: 2013-02-21Bibliographically approved
In thesis
1. Trust in Biobank Research: Meaning and Moral Significance
Open this publication in new window or tab >>Trust in Biobank Research: Meaning and Moral Significance
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

What role should trust have in biobank research? Is it a scarce resource to be cultivated, or does its moral significance lie elsewhere? How does it relate to the researcher’s individual responsibility?

In this thesis I draw four general conclusions. First, trust is still very much present in at least some biobanking settings, notably in Sweden, but possibly also internationally. Second, a morally relevant conception of trust entails that to be trustworthy, researchers must consider the normative expectations that people have of them, and renegotiate expectations that are mistaken. Third, this conception differs from “public trust” assessed through surveys. The main use of the latter is to legitimate policy, not to identify moral duties. Fourth, in spite of ethics review, guidelines and informed consent procedures, ethical issues will always arise during the course of a research project. Researchers can therefore never avoid their individual moral responsibility. Ensuring that one is adequately trusted is one step towards conducting morally acceptable research.

Study I indicates that few Swedes refuse storage of samples in healthcare-associated biobanks and their use in research. Study II suggests that people are somewhat more willing to donate samples than surveys indicate, especially when approached face-to-face by health care personnel. Relationships of trust might thus be important in people’s decision-making. Study III investigates trust as a moral concept. The trustee is often in a unique position to determine what the other’s trust amounts to. When it is mistaken, the trustee has an obligation to counteract it, compensate for it, or renegotiate the expectations that cannot be met. In Study IV, I critique the feasibility of guaranteeing the trustworthiness of the research apparatus through formal measures such as ethics review and guidelines. Not only are there limitations of such measures to consider. They also risk blinding researchers to ethical issues that are not covered by the rules, fostering moral complacency, and alienating researchers to ethics.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2013. 142 p.
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 861
Biobank, biobank research, bioethics, biobank ethics, research ethics, trust, trustworthiness, moral responsibility, informed consent, ethics review, ethics guidelines
National Category
Research subject
urn:nbn:se:uu:diva-192295 (URN)978-91-554-8585-6 (ISBN)
Public defence
2013-03-09, Auditorium Minus, Museum Gustavianum, Akademigatan 3, Uppsala, 09:15 (English)
Available from: 2013-02-15 Created: 2013-01-17 Last updated: 2013-04-02

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Johnsson, LinusHansson, Mats GEriksson, Stefan
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