Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Hypothetical and factual willingness to participate in biobank research
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
LIME, Karolinska Institutet, Stockholm. (Stockholm Centre for Healthcare Ethics)
UVS, Snorrabraut 60, Reykjavik, Iceland.
UVS, Snorrabraut 60, Reykjavik, Iceland.
Show others and affiliations
2010 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 18, p. 1261-1264Article in journal (Refereed) Published
Abstract [en]

In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited.

Place, publisher, year, edition, pages
Nature Publishing Group , 2010. Vol. 18, p. 1261-1264
Keywords [en]
biobanks, tissue banks, genetic databases, public attitudes, trust, public surveys
National Category
Medical and Health Sciences
Research subject
Bioethics
Identifiers
URN: urn:nbn:se:uu:diva-129210DOI: 10.1038/ejhg.2010.106ISI: 000283314700016OAI: oai:DiVA.org:uu-129210DiVA, id: diva2:338144
Projects
Autonomy and trust in biobank researchAvailable from: 2010-08-11 Created: 2010-08-09 Last updated: 2017-12-12Bibliographically 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. p. 142
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 861
Keywords
Biobank, biobank research, bioethics, biobank ethics, research ethics, trust, trustworthiness, moral responsibility, informed consent, ethics review, ethics guidelines
National Category
Bioethics
Research subject
Bioethics
Identifiers
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)
Opponent
Supervisors
Available from: 2013-02-15 Created: 2013-01-17 Last updated: 2013-04-02

Open Access in DiVA

fulltext(374 kB)312 downloads
File information
File name FULLTEXT02.pdfFile size 374 kBChecksum SHA-512
24a2102cdb39cddbb444566b64001d98388785eb157c1dbc94ad2e296cdd62ed19da05114aef42f1f17a469ce659bb2f323e62d51842dc41df087e63b73f4d53
Type fulltextMimetype application/pdf

Other links

Publisher's full texthttp://www.nature.com/doifinder/10.1038/ejhg.2010.106

Search in DiVA

By author/editor
Johnsson, LinusEriksson, StefanHansson, Mats G.
By organisation
Centre for Research Ethics and Bioethics
In the same journal
European Journal of Human Genetics
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar
Total: 312 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 531 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf