Public Perceptions and Biobanking: What Does the Research Really Say?

Abstract

Collection, storage, and use of biological specimens and clinical data is a historically contentious practice, especially among certain populations. It is therefore believed that public perceptions and opinions should be considered in the exploration of ethical issues associated with biobanking. It is hoped that this research will both help to illuminate the nature and depth of the social issues and inform the development of policy responses. We collected original research articles that dealt with public perceptions of biobanking initiatives, including both quantitative and qualitative findings. The intent was to elucidate public opinion on persistent key issues, including willingness to participate, consent, incidental findings and return of results, privacy, withdrawal, and ownership and control of provided material. While a wide range of issues and perspectives were explored in the research articles, the focus of this review is on the above list of key issues. With few exceptions (e.g., return of results and withdrawal), what is disclosed by this review of survey work is a lack of consensus on key issues, especially in the context of the nature of consent required.