With the growing importance of biobank research, concerns have been raised about how to protect the interests of donors. The current ethics framework mainly focuses on protecting against risks to donors'welfare and to their privacy. However, there has been little systematic empirical, normative, or policy focus on the non-welfare interests of donors, i.e., concerns about the moral, societal, or religious implications of research using their donation that may affect their willingness to donate. Although important theoretical discussions, mentions in commission reports, and insights from several qualitative studies have drawn attention to the serious nature of these interests, we lack important data for policy development: (1) systematic data on the nature and extent of potential impact of non-welfare interests and (2) high quality (i.e., informed and considered) policy preferences of the public addressing how to balance these non-welfare interests with the promise of biobank research. Our project will fill these gaps with two complementary projects. First, a national survey will assess the contours of the potential impact of non-welfare interests on biobank research, by addressing: what kinds of non-welfare interests substantially affect willingness to donate biological materials?;how common are these interests?;how much do donors want to know about the potential involvement of such non-welfare interests when donating?;how are non-welfare interests affected by such factors as race or ethnicity, socioeconomic status, trust in medical research, religious beliefs and practice, or political orientation? Second, we will obtain considered, informed judgments of the public regarding how to handle the tension between the public good of biobanks and the conflicting non-welfare interests of potential donors, using a democratic deliberation method in which subjects will attend an all-day education and peer deliberation session. The impact of the deliberation will be validated using a randomized, experimental design. In summary, despite the ethical significance of non-welfare interests for biobank research, there is a paucity of systematic data regarding both their potential impact and the potential policy solutions. This project will provide a highly generalizable assessment of the potential impact of non-welfare interests as well as policy recommendations based on informed, deliberative opinions of the general public.
The ethical discussions surrounding how to protect the donors of biobank research have focused mostly on reducing harms and respecting privacy interests of donors. There has been little focus on the ethical and policy significance of the non-welfare related interests of individual donors, i.e., individual concerns about the moral, societal or religious implications of research using their donation. This project will provide a systematic, generalizable assessment of the potential impact of non-welfare interests as well as policy recommendations based on informed, deliberative preferences of the general public.
| Tomlinson, Tom; De Vries, Raymond G; Kim, H Myra et al. (2018) Effect of deliberation on the public's attitudes toward consent policies for biobank research. Eur J Hum Genet 26:176-185 |
| De Vries, Raymond Gene; Tomlinson, Tom; Kim, Hyungjin Myra et al. (2016) Understanding the Public's Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey. PLoS One 11:e0159113 |
| De Vries, Raymond G; Tomlinson, Tom; Kim, H Myra et al. (2016) The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate. Life Sci Soc Policy 12:3 |
| Tomlinson, Tom; De Vries, Raymond; Ryan, Kerry et al. (2015) Moral concerns and the willingness to donate to a research biobank. JAMA 313:417-9 |
| Gornick, Michele C; Ryan, Kerry A; Kim, Scott Y H (2014) Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey. J Empir Res Hum Res Ethics 9:22-33 |
