ABSTRACT
This chapter adds to a growing body of qualitative empirical literature that investigates individuals’ motivations to participate in biobanks and emphasizes the social context of individual decision-making regarding participation (Barr 2006, Haimes and Whong-Barr 2004, Whong-Barr and Haimes 2003, Hoeyer 2004, 2003). However, unlike many of these studies, this chapter presents findings from a study of healthy volunteers recruited outside of a clinic setting, who were approached to enroll in the Environmental Polymorphisms Registry (EPR), based in North Carolina in the US. Two key issues that emerged from this study have implications for the design of recruitment and enrollment protocols involving healthy individuals for a biobank of this kind. The first issue was the role of financial incentives in affecting individuals’ decision-making whether to donate a sample of blood to the biobank. The second was how the consideration of external factors, such as the governance mechanisms in place for medical research, was brought into play when individuals were in the process of deliberation. These findings are significant as they highlight the reasons why healthy volunteers decide to participate in a biobank and the reasons why they decline participation. As recruitment of this population into biobanks as controls or as part of a sample population increases, healthy volunteers’ perceptions of participation in light of the ethical issues biobanking raises are especially important to understand.
