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

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    Author
    Du Plessis, R.
    Scott, A.
    Phillips, H.
    Cram, F.
    Tipene-Matua, B.
    Parsons, M.
    Taupo, K.
    Date
    2005
    Permanent Link
    http://hdl.handle.net/10092/669

    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.

    Subjects
    public participation in discussion of new health biotechnologies
     
    genetic testing
     
    biobanking
     
    public participation
     
    science-society
     
    Fields of Research::370000 Studies in Human Society::370100 Sociology::370105 Applied sociology, programme evaluation and social impact assessment
    Collections
    • Arts: Reports [31]
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    https://canterbury.libguides.com/rights/ir

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