Biobanks and the Moral Concerns of Donors: A Democratic Deliberation

Qualitative Health Research
Volume 29 Issue 13, November 2019


Research Articles
Biobanks and the Moral Concerns of Donors: A Democratic Deliberation
Raymond G. De Vries, Kerry A. Ryan, Linda Gordon, Chris D. Krenz, Tom Tomlinson, Scott Jewell, Scott Y. H. Kim
First Published August 10, 2018; pp. 1942–1953
Do members of the public believe that biobanks should accommodate the moral concerns of donors about the types of research done with their biospecimens? The answer to this question is critical to the future of genomic and precision medicine, endeavors that rely on a public willing to share their biospecimens and medical data. To explore public attitudes regarding the requirements of consent for biobank donations, we organized three democratic deliberations involving 180 participants. The deliberative sessions involved small group discussions informed by presentations given by experts in both biobank research and ethics. We found that participants had a sophisticated understanding of the ethical problems of biobank consent and the complexity of balancing donor concerns while promoting research important to the future of health care. Our research shows how deliberative methods can offer policy makers creative ideas for accommodating the moral concerns of donors in the biobank consent process.