Conference Abstracts

Stakeholder engagement as an integral part of biobanks policy development

Leanne Youngs, Hugh Dawkins, Caron Molster, Peter O’Leary

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

Following the achievements of the Human Genome Project the role of biobanks in genetic research has increased dramatically and the development of specific governance policies and frameworks has not progressed as rapidly. To address the need for policy around biobanks in Western Australia (WA) the Office of Population Health Genomics initiated a series of stakeholder consultations starting with professional and scientific groups. Initially a wide range of professional and scientific stakeholders formed two committees: an inventory working group (survey of researchers to develop an inventory of biobanks); a discussion paper advisory group (provide expert advice on the biobanks policy). To include an accurate representation of community attitudes to biobanks two deliberative engagement forums were run. Both forums were specifically designed to obtain the informed opinions of a wide range of representatives in the WA community. Randomly selected members of genetic support groups were invited to participate in the first forum and randomly selected members of the WA public were invited to participate in the second. Outcomes from both engagement forums and the stakeholder consultation are key components in the biobanks policy currently being developed for WA.

Presented at the Genes for Health Conference, May 2009