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Informed Consent and Biobanks: A Population-Based Study of Attitudes Towards Tissue Donation for Genetic Research
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
Umeå University, Faculty of Medicine, Department of Pharmacology and Clinical Neuroscience.
2004 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 32, no 3, 524-529 p.Article in journal (Refereed) Published
Abstract [en]

AIMS: The procurement and usage of tissue samples has begun receiving increasing legal and ethical attention. The authors' aim was to develop an empirically based understanding of public attitudes to the use of tissue for research. METHOD: A questionnaire was distributed to a randomized sample (n=1,000) of the population in the age group 18-85 in Västerbotten County, Sweden. RESULTS: The response rate was approximately 60%. There was a general acceptance of genetic research based on biobank material (71%) but, though it is often a prerequisite for tissue-based research, a majority (62%) would not allow researchers to examine their healthcare records without specific consent. A majority (66.8%) accepted surrogate decisions by research ethical committees; 48% of the respondents estimated that they would feel respected if they were notified each time a sample was used. When compared and ranked with other issues, informed consent was a principal concern to a minority (4%) only. Should research efforts generate information on future health risks, a majority (55%) would want to be told only if treatment was available. CONCLUSION: Though genetic research in bioethical debate is often viewed as a potential threat to the integrity of the donor, the confidentiality of medical records still seems to concern donors more. Research ethical committees have support in the majority of the population for some surrogate decisions. The current emphasis on the question of informed consent in policy making for biobank-based research does not seem to be reflected unambiguously in the concerns of the general public.

Place, publisher, year, edition, pages
2004. Vol. 32, no 3, 524-529 p.
Keyword [en]
biological specimen banks, informed consent, public opinion, research ethics
National Category
Medical and Health Sciences
URN: urn:nbn:se:umu:diva-4222DOI: 10.1080/14034940310019506PubMedID: 15204184OAI: diva2:143226
Available from: 2004-11-11 Created: 2004-11-11 Last updated: 2010-05-07Bibliographically approved
In thesis
1. Biobanks and informed consent: An anthropological contribution to medical ethics
Open this publication in new window or tab >>Biobanks and informed consent: An anthropological contribution to medical ethics
2004 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: 1985 saw the beginnings of a population-based biobank in Västerbotten County, Sweden. In 1999, a start-up genomics company, UmanGenomics, obtained ‘all commercial rights’ to the biobank. The company introduced an ethics policy, which was well received in prestigious journals, focusing on public oversight and informed consent.

Aims: To explore how social anthropology can aid understanding of the challenges posed by the new role of the biobank in Västerbotten, and thus complement more established traditions in the field of medical ethics. An anthropological study of the ethics policy was executed.

Theoretical perspective: Inspired by the anthropology of policy and social science perspectives on ethics and morality, the policy was studied at three analytical levels: policymakers (who formulate the policy), policy workers (who implement the policy, primarily nurses who obtain informed consent) and target group (for whom and on whom the policy is supposed to work: the potential donors to the biobank).

Methods: Policymakers, nurses, and potential donors were interviewed, donations observed, and official documents analysed to mirror the moral problematizations made at the three levels in each other and to study the practical implications of the policy. To extend the reliability of the findings two surveys were executed: one among the general population, one among donors.

Results: The qualitative studies show that policymakers distinguish between blood and data differently to potential donors. Informed consent seems more important to policymakers than potential donors, who are more concerned about political implications at a societal level. Among the respondents from the survey in the general public, a majority (66.8%) accepted surrogate decisions by Research Ethics Committees; a minority (4 %) stated informed consent as a principal concern; and genetic research based on biobank material was generally accepted (71%). Among the respondents to the survey in donors, 65% knew they had consented to donate a blood sample, and 32% knew they could withdraw their consent; 6% were dissatisfied with the information they had received; and 85% accepted surrogate decisions by Research Ethics Committees.

Discussion: The ethics policy constitutes a particular naming and framing of moral problems in biobank-based research which overemphasises the need for informed consent, and underemphasises other concerns of potential donors. This embodies a political transformation where access to stored blood and medical information is negotiated in ethical terms, while it also has unacknowledged political implications. In particular, the relations between authorities and citizens in the Swedish welfare state are apparently transforming: from mutual obligation to individual contracts.

Conclusion: Anthropology contributes to medical ethics with increased awareness of the practical implications of particular research ethical initiatives. This awareness promotes appreciation of the political implications of ethics policies and raises new issues for further consideration.

123 p.
Umeå University medical dissertations, ISSN 0346-6612 ; 929
Medical ethics, empirical ethics, social anthropology, policy, informed consent, stored human tissue
Research subject
urn:nbn:se:umu:diva-358 (URN)91-7305-767-3 (ISBN)
Public defence
2004-12-11, Sal D, Tandläkarhögskolan 9 tr., Norrlands universitetssjukhus, Umeå, 00:00 (English)
Available from: 2004-11-11 Created: 2004-11-11 Last updated: 2010-05-07Bibliographically approved

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