Conference Abstracts

Community engagement for policy development: Are health consumers representative of the general public?

Gaenor Kyne, Caron Molster, Peter O’Leary

Office of Population Health Genomics, Department of Health, Western Australia

Community engagement aims to improve health policy and planning by identifying core citizen values and the opinions of a well-informed citizenry. Two deliberative forums were held over 4 weekends to determine ‘How Biobanks should operate in WA’. The first event was held in August 2008 with 18 members of genetic support groups in WA. The second event was run in November 2008 with 16 randomly selected members of the Western Australian general public. The purpose of the forums was to identify core values, hopes and concerns relating to biobanks and to work toward consensus, identify areas of persistent disagreement and make recommendations to policy makers. The information outcomes of each forum were analysed using qualitative methodologies such as content analysis. While there were key areas of overlap, some aspects of the information outcomes from each event were quite different.  Health consumers were shown to place a stronger focus on community consultation and involvement in biobanks whereas the general public focused more on monitoring and review of the biobank. From the results it seems that each group had a different set of core values, hopes and concerns in relation to how biobanks should operate in WA. This suggests that health consumers are not representative of the wider community and identifies the importance of consulting with both during the process of policy development.

Presented at the Genes for Health Conference, May 2009