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Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: A population-based study

Department of Pharmacy, Figure 580, 751 23 Uppsala, Sweden, asa.kettis{at}farmaci.uu.se

Lena Ring

Department of Pharmacy, Figure 580, 751 23 Uppsala, Sweden

Eva Viberth

Department of Pharmacy, Figure 580, 751 23 Uppsala, Sweden

Mats G. Hansson

Center of Bioethics at Karolinska Institutet and Uppsala University, Department of Public Health and Caring Sciences, Uppsala University, Uppsala Science Park, 751 85 Uppsala, Sweden

Aims: To assess the Swedish public's preferences for information and consent procedures when being asked for permission to use previously collected tissue samples for new research studies. Methods: Cross-sectional study employing postal questionnaires to a random sample of the Swedish general public (n=6,000) in October 2002—February 2003. The response rate was 49% (n=2,928). This paper includes only respondents who reportedly would approve of samples being taken and stored (n=2,122). Results: When potential tissue sample donors in the general public have to strike a balance between the values at stake, i.e. the autonomy of the donor versus the research value, most (72%) prefer general consent, i.e. where consent is asked for at the outset only. They want the research ethics committee (REC) alone to decide on the use of stored samples, and they would allow storage as long as the sample is useful for research. The minority of respondents who were in favour of specific consent were more likely to be young, well educated, have negative experiences of healthcare and low trust in healthcare authorities. Conclusions: The majority of the Swedish general public prefer general consent, and are thus willing to delegate some decisions to the RECs. However, preferences for information and consent procedures depend on the context, e.g. the risks for the donor and the purpose of the research. If feasible, procedures should be differentiated according to the preferences of individual donors, thus protecting the interests of both the minority and the majority.

Key Words: Attitude • biobanks • cross-sectional • general population • genetic research • informed consent • public opinion • stored tissue samples • survey • tissue banks

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