The Value of Using Top-Down and Bottom-Up Approaches for Building Trust and Transparency in Biobanking

With the domestic and international proliferation of biobanks and their associated connections to health information 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 management. Calls for greater transparency in governance structures, coupled with stern reminders of the value of maintaining 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 developing policy, procedures, regulations and guidelines to aid decision-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 recommendations 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 address issues arising from biobanks that provide some insight into issues associated with trust and transparency. Copyright © 2010 S. Karger AG, Basel Published online: April 15, 2010 Eric M. Meslin, PhD Indiana University Center for Bioethics, Indiana University School of Medicine 410 West 10th Street, Suite 3100 Indianapolis, IN 46202 (USA) Tel. +1 317 278 4040, Fax +1 317 278 4050, E-Mail emeslin @ iupui.edu © 2010 S. Karger AG, Basel Accessible online at: www.karger.com/phg D ow nl oa de d by : 54 .1 91 .4 0. 80 4 /2 9/ 20 17 6 :4 7: 13 A M