Findings from US public consultation on genes, environment and health

17 February 2009

The US Genetics and Public Policy Centre (GPPC) has released a report outlining its findings from a public consultation project aimed at gathering information about the public’s attitude and willingness to participate in a proposed large cohort study (see press release). The project was initiated following interest by federal agencies such as the US National Institute of Health (NIH) in conducting a large cohort study that would gather information on participants’ genes, environment and health and follow them over the course of 10 years in order to better understand the interaction between these factors. It is hoped that the findings from the pilot consultation study conducted by the GPPC will help inform the design and implementation of the proposed biobank as well as further public consultation exercises associated with such ventures.

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.

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