The Value of using top-down and bottom-up approaches for building trust and transparency in Biobanking

Abstract

With the domestic and international proliferation of bio- banks and their associated connections to health informa- tion databases, scholarly attention has been turning from the ethical issues arising from the construction of biobanks to the ethical issues that emerge in their operation and man- agement. Calls for greater transparency in governance struc- tures, coupled with stern reminders of the value of main- taining public trust, are seen as critical components in the success of these resources. Two different approaches have been adopted for addressing these types of ethical issues: the first is a ‘top-down’ approach which focuses on develop- ing policy, procedures, regulations and guidelines to aid de- cision-makers. The second is a ‘bottom-up’ approach, which begins with those who are most affected by the issues and attempts to inductively develop consensus recommenda- tions and policy. While both approaches have merit, I argue that more work needs to be done on ‘bottom-up’ strategies if trust and transparency are to be more than mere slogans. Using 2 case examples from Indiana, the paper summarizes data from a set of surveys we recently conducted that ad- dress issues arising from biobanks that provide some insight into issues associated with trust and transparency.