3 research outputs found
The Social, Cultural, Ethical and Spiritual Implications of Genetic Testing and the Storage of Genetic Information
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