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“Science Is Really Needed – That’s All I Know”: Informed Consent and the Non-Verbal Practices of Collecting Blood for Genetic Research in Northern Sweden
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
2003 (English)In: New genetics and society (Print), ISSN 1463-6778, E-ISSN 1469-9915, Vol. 22, no 3, 229-244 p.Article in journal (Refereed) Published
Abstract [en]

In Västerbotten County in northern Sweden a start-up biotech company has recently gained all commercial rights to one of the worlds largest population based research biobanks. The biobank and the company have publicly emphasized that all donors have given their informed consent to participate, but within the academy it has become debated whether people have been adequately informed. Based on anthropological fieldwork it is shown that many people do not read the information provided. The data do not, however, suggest that donors themselves perceive a lack of information. This article endeavours to make meaningful the apparent lack of interest among donors in the information they are offered. It is argued that the donation of blood should be analysed in its social and historical context rather than as a response to rational assessment of information of research purposes. It implies a conceptualisation of agency more aware of the intersubjective nature of moral negotiation than usually implied in studies of informed consent.

Place, publisher, year, edition, pages
2003. Vol. 22, no 3, 229-244 p.
National Category
Medical and Health Sciences
URN: urn:nbn:se:umu:diva-4220DOI: 10.1080/1463677032000147199PubMedID: 15115024OAI: diva2:143224
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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