Structuring public engagement for effective input in policy development on human tissue biobanking

Abstract

We begin with the premise that human tissue biobanking is associated with ethical ambiguities and regulatory uncertainty, and that public engagement is at least one important element in addressing such challenges. One is then confronted with how to achieve public engagement that is both meaningful and effective. In particular, how can public engagement on the topic of biobanking be implemented so that (a) it is perceived broadly as legitimate and (b) the results of the engagement are relevant and useful to the institutional and regulatory context? In this paper we build on previous work that has addressed the former point and focus primarily on the latter. We argue that one way to increase the likelihood of results of public engagement being taken up in policy is through framing the issues that are deliberated by members of the public based in part on the practical policy questions for which input is sought. In this approach, we move discussion on the social and ethical implications of biobanking from abstract principles, to their consideration in the context of local biobanking practices. This is illustrated using a practical example involving a public engagement conducted to inform institutional policy for biobanking in British Columbia, Canada.