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Cultural conceptions of research and informed consent.

AIDS has had a negative impact on developing countries. Because most developing countries
cannot afford the new antiretroviral drug therapies, it has been suggested that preventive
vaccines might reduce the spread of the HIV/AIDS epidemic (Bloom, 1998). The clinical
trials of AIDS vaccines do, however, present with complex ethical issues such as informed
consent. Informed consent is primarily grounded on the Western principle of respect for
individuals as autonomous agents. This may be at variance, however, with African societies'
emphasis on the social embeddedness of the individual.
The current study forms part of the HIVNET vaccine trials to be conducted in Hlabisa, in
Northern Zululand, under the auspices of the South African Medical Research Council. The
main aim of the study was to explore key informants' cultural conceptions of research and
informed consent in order to facilitate community consultation and cultural sensitivity.
Maximum variation sampling was used to select twenty-three key informants, who are in
leadership positions within Hlabisa. An interview guide was used to facilitate narrative
disclosure of cultural conceptions of research and informed consent. Perceptions of research,
conceptions of the informed consent process, and projected motivations for why individuals
agree to participate in studies were explored during interviews.
Results suggest that members of the Hlabisa community have a limited understanding of the
Western research process. Community education about research is therefore warranted.
Informants indicated that community members would value the establishment of a
relationship characterised by mutual respect for cultural differences between researchers and
participants. This was perceived as likely to facilitate shared decision-making, and the
reduction of the power differentials that exist between researchers and participants. While the
involvement of key community leaders and family members was recommended by most
informants, a few informants felt that participants could also make individual decisions about
participation. The theoretical implications of the study are considered last. / Thesis (M.A.)-University of Natal, Pietermaritzburg, 1999.

Identiferoai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:ukzn/oai:http://researchspace.ukzn.ac.za:10413/5843
Date January 1999
CreatorsGasa, Nolwazi Bright Khanyisile.
ContributorsLindegger, Graham Charles., Richter, Linda.
Source SetsSouth African National ETD Portal
LanguageEnglish
Detected LanguageEnglish
TypeThesis

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