Mobilizing women at the grassroots to shape health policy: a case study of the Global Campaign for Microbicides

Forbes, Anna

doi:10.1016/s0968-8080(13)42735-0

Cited by 7 publications

(8 citation statements)

References 13 publications

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“…Much has been written about the events of the Cambodia trial and whether the trial was ethical (e.g. Forbes and Mudaliar, 2009; Hammer and Lundstrom, 2006; Page-Shafer et al, 2005; Sandy, 2013), but we know less about how research ethics became the ground of engagement and critique.…”

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confidence: 99%

From subjects to relations: Bioethics and the articulation of postcolonial politics in the Cambodia Pre-Exposure Prophylaxis trial

Grant

2016

Soc Stud Sci

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Controversies about global clinical trials, particularly HIV trials, tend to be framed in terms of ethics. In this article, I explore debates about ethics in the Cambodia Pre-Exposure Prophylaxis trial, which was designed to test the safety and efficacy of tenofovir as a prevention for HIV infection. Bringing together studies of public participation in science with studies of bioethics, I show how activists around the Cambodian Pre-Exposure Prophylaxis trial circulated and provoked debates about standards of research ethics, as opposed to research methodology. This postcolonial bioethics was configured through the circulation of and debate about ethics guidelines, and historically and culturally specific relations of vulnerability and responsibility between foreigners and Cambodians and between Cambodian leaders and Cambodian subjects. I argue that this shift in the object of ethical concern, from the experimental human subject to the relation between subjects and researchers, illustrates how a postcolonial field of articulation reformulates classical bioethics.

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confidence: 99%

From subjects to relations: Bioethics and the articulation of postcolonial politics in the Cambodia Pre-Exposure Prophylaxis trial

Grant

2016

Soc Stud Sci

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“…The work of Forbes [ 18 ], on the other hand, underscored other types of agenda-setting strategies that entailed civil societal actors organizing and attending international conferences to present and emphasize scientific research advocating for particular treatment policies, such as the adoption of microbicides drugs for HIV prevention for woman at international AIDS conferences. Similarly, Sasser [ 65 ] shows how activists often present research at conferences linking the importance of investing in population and reproductive rights with climate change programs.…”

Section: Civil Society In Global Health Policymaking Processesmentioning

confidence: 99%

Civil society in global health policymaking: a critical review

Gómez

2018

Global Health

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BackgroundA social science approach to the study of civil society’s role and influence in global health policymaking is a new area of scholarly research. In this article, I conduct a critical literature review to assess the recent research done on this topic.Main bodyI find that most research has been narrowly focused on the agenda-setting and policy implementation stages, failing to account for all stages of the policymaking process and civil society’s role in it. Additionally, very little effort has been made to test and develop theoretical and analytical policymaking frameworks, clearly and consistently defining and conceptualizing civil society’s role and influence in global health policymaking, provide methodological specificity and diversity, while emphasizing the importance of causal mechanisms.ConclusionI conclude by encouraging scholars to address these lacuna in the literature and to explore the utility of political science theory and alternative policymaking models to better define and explain the complexity of civil society’s role and influence in global health policymaking processes.

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“…Breakdown in communications between trial participants and clinical trial sites is not uncommon, particularly when involving marginalized populations [ 14 – 16 ]. The absence of clear communication between trial participants and trial investigators contributed to premature trial closures in at least two sites [ 1 , 2 ]. In such trial contexts where project communications falter, trial staff including recruiters, interviewers, screeners, site managers and medical technicians can be put in the position of mediating between participants and researchers.…”

Section: Purposementioning

confidence: 99%

“…The community advisory boards (CABs) of these trials comprise community members and researchers with the intention of presenting the concerns of community members to trials in a structured way. In some cases, due to a lack of research literacy, some CABs can struggle to translate research to community members and community concerns to researchers [ 1 , 2 , 16 ]. The challenges of community engagement and participation in clinical trials and HIV prevention research are well documented [ 17 – 20 ].…”

Section: Purposementioning

confidence: 99%

“…The closures of biomedical human immunodeficiency virus (HIV) prevention trials involving sex workers in Cameroon [ 1 ] and Cambodia [ 2 ] in 2004 were unprecedented: no previous trials had been halted due to community and participant protest. The closures indicated that current procedures to protect research participants such as human subjects review boards and 20th century codes for research ethics such as the Declaration of Helsinki [ 3 ] may not be adequate [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

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'Who is Helsinki?' Sex workers advise improving communication for good participatory practice in clinical trials

Ditmore

Allman

2011

Health Education Research

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After premature closures in 2004 of biomedical human immunodeficiency virus (HIV) prevention trials involving sex workers in Africa and Asia, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and Global Advocacy for HIV Prevention (AVAC) undertook consultations to establish better participatory guidelines for such trials in order to address ethical concerns. This study investigated sex workers’ knowledge and beliefs about research ethics and good participatory practices (GPP) and the perspectives of sex workers on research participation. A 33-question survey based on criteria identified by UNAIDS and AVAC was translated into three other languages. Participants were recruited through mailing lists and contacts with existing sex work networks. In total, 74 responses from Europe, the Americas and Asia were received. Thirty percent of respondents reported first-hand involvement in biomedical HIV prevention trials. Seventy percent indicated a lack of familiarity with codes of ethics for research. This paper focuses exclusively on communication issues described in survey responses. Communication was an important theme: the absence of clear communication between trial participants and investigators contributed to premature trial closures in at least two sites. Sex workers had recommendations for how researchers might implement GPP through improved communication, including consultation at the outset of planning, explaining procedures in non-technical terms and establishing clear channels for feedback from participants.

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Mobilizing women at the grassroots to shape health policy: a case study of the Global Campaign for Microbicides

Cited by 7 publications

References 13 publications

From subjects to relations: Bioethics and the articulation of postcolonial politics in the Cambodia Pre-Exposure Prophylaxis trial

From subjects to relations: Bioethics and the articulation of postcolonial politics in the Cambodia Pre-Exposure Prophylaxis trial

Civil society in global health policymaking: a critical review

'Who is Helsinki?' Sex workers advise improving communication for good participatory practice in clinical trials

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