Developing World Bioethics 12 (3):138-148 (2012)

Abstract
Civil society organizations (CSOs) have significantly impacted on the politics of health research and the field of bioethics. In the global HIV epidemic, CSOs have served a pivotal stakeholder role. The dire need for development of new prevention technologies has raised critical challenges for the ethical engagement of community stakeholders in HIV research. This study explored the perspectives of CSO representatives involved in HIV prevention trials (HPTs) on the impact of premature trial closures on stakeholder engagement. Fourteen respondents from South African and international CSOs representing activist and advocacy groups, community mobilisation initiatives, and human and legal rights groups were purposively sampled based on involvement in HPTs. Interviews were conducted from February-May 2010. Descriptive analysis was undertaken across interviews and key themes were developed inductively. CSO representatives largely described positive outcomes of recent microbicide and HIV vaccine trial terminations, particularly in South Africa, which they attributed to improvements in stakeholder engagement. Ongoing challenges to community engagement included the need for principled justifications for selective stakeholder engagement at strategic time-points, as well as the need for legitimate alternatives to CABs as mechanisms for engagement. Key issues for CSOs in relation to research were also raised
Keywords community network  clinical trials   South Africa   NGO  developing world bioethics   HIV/AIDS
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DOI 10.1111/j.1471-8847.2012.00338.x
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References found in this work BETA

Four Paradigms of Clinical Research and Research Oversight.Ezekiel J. Emanuel & Christine Grady - 2007 - Cambridge Quarterly of Healthcare Ethics 16 (1):82-96.
Towards a Social Psychology of Community: A Social Representations Perspective.Caroline Susannah Howarth - 2001 - Journal for the Theory of Social Behaviour 31 (2):223–238.
HIV Research.John Y. Killen Jr - 2008 - In Ezekiel J. Emanuel (ed.), The Oxford Textbook of Clinical Research Ethics. Oxford University Press.

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HIV Vaccine Trial Participation in South Africa - an Ethical Assessment.Keymanthri Moodley - 2002 - Journal of Medicine and Philosophy 27 (2):197 – 215.

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