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Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research

Medical Ethics, Department of Health Services Research, University of Copenhagen, Denmark, klaus.hoeyer{at}medicin.umu.se

Bert-Ove Olofsson

Medicine, Department of Public Health and Clinical Medicine, Umeå University

Tom Mjörndal

Department of Pharmacology and Clinical Neuroscience, Umeå University, Sweden

Niels Lynöe

Medical Ethics, Department of Health Services Research, University of Copenhagen, Denmark, LIME, Karolinska Institute, Stockholm, Sweden

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.

Key Words: biological specimen banks • informed consent • public opinion • research ethics.

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