A New Social Contract for Biobanking: The Benefits and Challenges of Using Public Deliberation to Ground Trustworthy Research

Abstract: Biobanks are collections of biological samples and information that have become cornerstones of medical research. They became common in the early 2000s after extensive discussion of the ethics of collecting biological samples and data for unspecified future research, often for unlimited time periods. One method used to identify public attitudes in this area was “public deliberation,” where a small group of laypeople meets for an extended period of time (e.g. 4 days over 2 non-consecutive weekends) to learn about the issues and tradeoffs and issue recommendations.

Biobanks now have features that could not have been envisioned during the discussions a quarter century ago, including: the ubiquity of electronic health records to provide health information, the ability to sequence genomes, sometimes with support of private-public partnerships, the availability of massive amounts of information about biobank participants in the “big data” era, and the ability to engage participants electronically repeatedly through email, text, and other methods.

These features of modern biobanks raise important questions about how to ethically collect and utilize health information, share information, sequence genomes, and return individual research results to participants. Our research team is conducting a public deliberation funded by the NIH to examine these new issues.

In this panel, our interdisciplinary group will describe the complex choices involved in designing and implementing this deliberation, to illustrate the method and highlight its benefits and challenges. We will finally present the recommendations offered by the deliberants, and discuss the successes and limitations of the exercise.