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The applied ethics of community involvement in HIV vaccine development

Since the emergence of HIV/AIDS as a global pandemic in the 1980’s, the focus of the scientific community has been to firstly identify, then treat and ultimately find a cure for, this disease. This has proven to be challenging and far from realistically achievable by the scientific community or the communities affected by this disease. / A funding allocation from the National Institutes of Health in the United States came to a consortium in Australia seeking to develop a prime-boost preventative HIV vaccine. The consortium included members of the Australian HIV/AIDS Partnership. This partnership emerged from a particular set of historical contexts and included affected community. The Australian Federation of AIDS Organisations was the affected community representative on the consortium. This thesis sets out the contextual and ethical reasons for this arrangement, and explores how this unusual partnership worked in practice, with a view to identifying its broader implications. / HIV vaccine development, and AFAO’s role in that development, is complex and multifaceted. The consortium existed within a particular social context which I explore by describing the social history of HIV in Australia. The search for an HIV vaccine is difficult and complex work requiring significant effort and I describe the challenges involved in such an enterprise. Biomedical research more generally exists in the context of international and national research documents which govern the way in which researchers may conduct human experimental trialling. I discuss these documents and highlight the underlying ethical principles. / This research involved 9 interviews with 7 key informants who were members of the consortium. The accounts were analysed following a grounded theory approach, utilising the sensitising concepts outlined in the discussion of the social history of HIV in Australia, the science of HIV vaccine development and the general and specific ethical principles. Following this methodological approach, I identify common themes in the data and discuss the results in greater detail, paying particular attention to the ways this particular social practice plays out in practice and the key ethical considerations arising from the accounts. I also explore the risks, costs and benefits to AFAO of its involvement in the consortium. The overall aim of this research is to understand how practicable, feasible and effective community involvement was in this consortium. / Finally, I come to three major conclusions. First, that the consortium is an emerging social practice, which is the intersection of three established social practices; biomedical research, the affected community and the Australian HIV/AIDS Partnership. Using Langford’s criteria for a social practice, I demonstrate the social practice of the consortium was clearly made up of members who were aware of each other’s intentions and beliefs. It was clear from the commencement of the consortium’s project that the consortium was directed at the overall purpose of developing an efficacious preventative prime-boost HIV vaccine. The unique history and tradition of the social practice of the consortium is slightly less clear but what the accounts of the informants demonstrated is that the histories and traditions of the Australian HIV/AIDS Partnership approach and biomedical research, in particular, were a significant influence on most of the consortium members. So much so, that the consortium adopted that unique history and tradition and it was this factor, perhaps above all others, that facilitated AFAO becoming a full partner in the vaccine development enterprise in the first place. Importantly, my research theoretically extends the notion of shared ways of seeing and doing within a social practice. The socialisation aspects are highlighted very strongly within the accounts. / Second, AFAO’s involvement was highly concordant with the core principles of the Good Participatory Practice Guidelines for biomedical HIV prevention trials document, and it influenced important protocols within the consortium, but there were also conflict of interest issues for AFAO to manage. Third, the different approaches for community involvement in biomedical HIV prevention trialling (the partnership approach and the Community Advisory Board approach) each has strengths and weaknesses and should be carefully considered in light of the context of the trialling to be conducted. / This thesis concludes with a series of recommendations for future biomedical HIV prevention trials.

Identiferoai:union.ndltd.org:ADTP/245427
Date January 2009
CreatorsDavies, Grant Thomas
Source SetsAustraliasian Digital Theses Program
LanguageEnglish
Detected LanguageEnglish
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