Biobanking, Consent, and Control: A Survey of Albertans on Key Research Ethics Issues

Abstract

While the development of large scale biobanks continues, ethics and policy challenges persist. Debate surrounds key issues such as giving and withdrawing consent, incidental findings and return of results, and ownership and control of tissue samples. Studies of public perception have demonstrated a lack of consensus on these issues, particularly in different jurisdictions. We conducted a telephone survey of members of the public in Alberta, Canada. The survey addressed the aforementioned issues, but also explored public trust in the individuals and institutions involved in biobanking research. Results show that the Alberta public is fairly consistent in their responses and that those who preferred a broad consent model were also less likely to desire continuing control and a right to withdraw samples. The study raises questions about the role of public perceptions and opinions, particularly in the absence of consensus.