17 February 2009
The GPPC gathered information on public attitudes through conducting a series of sixteen focus groups in six locations across the US, individual interviews with community leaders, a national survey and Town Hall meetings. Meetings were conducted in order to gather further feedback from the public and attempts were made to ensure that these sessions represented the demographics of each location. Attendees were asked to consider and give their views on issues such as the benefits and burdens of the proposed study, acceptable and unacceptable types of research and policy needs amongst others.
The report concluded that most people who attended the sessions agreed with the proposed biobank venture, even though some of those who agreed with the proposal would not participate in the actual venture. Although the sessions were viewed favourably and were thought to be an effective means of gathering public views, the authors of the report felt that it had its limitations in terms of representing the community. Most people who attended the session were more highly educated than the general populace and more efforts need to be made in order to increase attendance by all segments of the community.
Comment: Biobank ventures are becoming increasing important as researchers try to understand how interactions between genes and the environment influence health, requiring studies to examine genetic factors, environmental exposures and health outcomes in large population groups over extended periods. However, their success depends on ensuring acceptance and participation from members of the general public. Many issues and concerns such as privacy, return of results and regulation of such studies may deter people from participating or contributing to such ventures, and there have been various initiatives to assess these concerns and consider how to address them (see previous news). Public engagement activities are necessary to understand public attitudes to such research and ensure that their concerns are adequately addressed.