Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?

Abstract

Background: The aim of this study was to identify perceptions of the general public regarding research involving human tissues; to assess the public's willingness to donate samples to biobanks; and to identify factors associated with the willingness to donate samples. Methods: Cross-sectional survey. Postal questionnaires to a random sample of the general public in Sweden, 18–80 years of age (n = 6000) in October 2002 (response rate 49.4%; n = 2928). Results: A majority of the respondents had a positive attitude towards genetic research. Their trust in authorities' capability to evaluate the risks and benefits of genetic research varied. Individual university/hospital-based researchers received the greatest trust, while the county councils (health care providers), and the Swedish Parliament received the lowest trust. Most respondents (86.0%) would donate a linked blood sample for research purposes. Another 3.0% would provide an anonymous sample. In total, 78% of the respondents would agree to both donation and storage. The most common motive was benefit of future patients. The majority was indifferent to the funding source for the research and would delegate this judgment to the research ethics committee. After adjusting for covariates, those more likely to donate a sample were middle-aged, had children, had personal experience of genetic disease, were blood donors, had a positive attitude toward genetic research, and had trust in experts/institutions. Conclusions: The majority of the general public is willing to donate a sample to a biobank. The willingness is mainly driven by altruism, and depends on the public being well-informed and having trust in experts and institutions.