uu.seUppsala University Publications
Change search
ReferencesLink to record
Permanent link

Direct link
Potential harms, anonymization, and the right to withdraw consent to 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.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. (Biomedical Ethics)
2005 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 13, no 9, 1071-1076 p.Article in journal (Refereed) Published
Abstract [en]

This paper discusses the potential harms involved in biobank research and how ethical review, informed consent, withdrawals, and anonymization of samples should be handled in the light of these harms. There is less risk involved in biobank research than in human subject research; it should therefore be treated differently. In our view, anonymization should not be an automatically permissible response to requests for withdrawal. Nor should a request for withdrawal necessarily stop research on identifiable samples. Apart from not being particularly appropriate for protecting the interests of individuals, anonymization of samples has a negative impact on research. We suggest that the current view on withdrawal from research, supported by the Declaration of Helsinki and subsequent ethical guidelines, be abandoned in the context of biobank research and be replaced by an approach inspired by the Nuremberg Code. This approach requires those wishing to withdraw their samples from research to present sufficient reason for doing so. Our interpretation of 'sufficient reason' includes all those involving genuine, deeply felt concerns that are not based on misconceptions. Still, this underlines the fact that we all share a responsibility for health research and that no one should take withdrawal from biobank research lightly.

Place, publisher, year, edition, pages
2005. Vol. 13, no 9, 1071-1076 p.
Keyword [en]
Biological Specimen Banks/*ethics, Codes of Ethics, Confidentiality/*ethics, Ethical Review, Ethics; Research, Humans, Informed Consent/*ethics, Personal Autonomy, Refusal to Participate/*ethics, Research Subjects, Research Support; Non-U.S. Gov't
National Category
Medical and Health Sciences
Research subject
URN: urn:nbn:se:uu:diva-78526DOI: 10.1038/sj.ejhg.5201458PubMedID: 15986039OAI: oai:DiVA.org:uu-78526DiVA: diva2:106439
Available from: 2008-12-16 Created: 2008-12-16 Last updated: 2013-02-06Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full textPubMedhttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=15986039&dopt=Citation

Search in DiVA

By author/editor
Eriksson, StefanHelgesson, Gert
By organisation
Centre for Research Ethics and BioethicsDepartment of Public Health and Caring Sciences
In the same journal
European Journal of Human Genetics
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar
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

Altmetric score

Total: 192 hits
ReferencesLink to record
Permanent link

Direct link