The Social, Cultural, Ethical and Spiritual Implications of Genetic Testing and the Storage of Genetic Information

Abstract

Public participation in discussion and decision-making about the development, use and regulation of science and technology is increasingly identified as a necessary component of democratic states. The challenge is how to effect this participation and encourage public engagement in conversations about science and technology issues. How can citizens be incorporated into discussion, debate and the formulation of policy? How can their knowledge and understandings have an impact on the decisions about the development and application of these technologies? What can we learn from conversations among members of community organisations, informal networks and whanau/family groups about the implications for their lives of these technologies? This paper summarises the preliminary findings from twenty-four focus groups convened to talk about genetic profiling, direct to consumer genetic testing and biobanking. Eight of these groups included only Maori participants, while the other sixteen groups were predominantly Pakeha. The responses in Maori specific groups and the groups drawn from the general population are initially analysed separately. This is followed by attention to some of the connections and differences between conversations in the Maori specific groups and the other groups.