Power to the people: a wiki-governance model for biobanks

Abstract

Biobanks are adopting various modes of public engagement to close the agency gap between participants and biobank builders. We propose a wiki-governance model for biobanks that harnesses Web 2.0, and which gives citizens the ability to collaborate in biobank governance and policymaking.

Figure 1

A wiki-governance model for biobanks. In the proposed wiki-governance model, (1) interested individuals would register on a secure-access website that houses component parts of a biobank governance structure. (2) These publics, with assistance from biobank insiders (such as managers and researchers), policy consultants, and IT-savvy wiki-moderators, would then shape policy content via various networking tools, such as comment and discussion boards, virtual forums and polls. (3) The policy content would then be molded into workable policies and guidelines via drafts; a final version would be determined by the biobank management committee, acting as arbiter, and possibly voted on by the publics. (4) A collaborative biobank governance infrastructure would then be reached. However, a continuous feedback loop is employed so that as significant science, technology and socio-legal developments arise, publics can better assess the impact and dynamics of genomics research [64], challenge existing governance policies and procedures, and help shape future ones.