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Framing the social in biomedical HIV prevention trials: a 20-year retrospective
1Behavioral and Social Sciences, FHI360, 2224 ENC Hwy 54, Durham, NC 27713, USA. kmacqueen@fhi360.org
Abstract:
Biomedical research is critical to identifying effective and safe interventions, such as vaccines, microbicides, male circumcision and antiretrovirals, for prevention. Funding for clinical prevention trials is highly competitive and the benchmarks of success ultimately reduce to quickly enrolling a select group of people at risk, keeping them enrolled, and inducing them to be compliant with trial requirements - all at the lowest cost possible. Juxtaposed with this reality is the fact that HIV is situated with poverty, exploitation, assaults on human dignity, and human rights abuses. The result is a complex web of ethical challenges that are socially constructed along lines of wealth and power. While social science research methods are commonly employed to examine such topics, they have played a marginal role in biomedical HIV prevention research. Why? To answer this question, a core set of persistent interlocking social, behavioural and ethical challenges to biomedical HIV prevention research are described. A critique is offered on how the social has been framed relative to the behavioural, ethical and biomedical components. Examples of how this framing has devalued social knowledge are provided, including the conflation of qualitative research with anecdotal reporting, a bias toward brevity and accuracy over external validity, and difficulties in distinguishing between a moral understanding of social norms and achieving a moral outcome when confronted with ethical challenges in research. Lastly, opportunities are identified for enhancing the success of biomedical HIV prevention research through development of a coherent programme of social science research. Recommendations are offered for reframing the social as a valid domain of scientific inquiry in this highly applied and interdisciplinary context.
Insights
Integrating social science research into biomedical HIV prevention trials is crucial. This approach addresses ethical complexities and enhances participant engagement, leading to more effective HIV prevention strategies.
Area of Science:
- Public Health
- Social Sciences
- Medical Ethics
Background:
- Biomedical HIV prevention research relies on efficient participant enrollment and adherence, often overlooking the social determinants of health.
- HIV prevention trials face ethical challenges rooted in socioeconomic disparities, human rights issues, and power imbalances.
- Social science research methods are underutilized in biomedical HIV prevention, despite their relevance to understanding complex social dynamics.
Discussion:
- The framing of social factors in HIV research often marginalizes social science knowledge, conflating qualitative data with anecdotal evidence.
- There's a bias towards brevity and accuracy in biomedical research, potentially sacrificing external validity and a nuanced understanding of social norms.
- Distinguishing between understanding social norms and achieving ethical outcomes in research presents a significant challenge.
Key Insights:
- Social science research is vital for navigating the ethical complexities inherent in HIV prevention trials.
- Reframing social science as a valid scientific domain can improve the design and execution of HIV prevention research.
- Addressing the social and ethical dimensions is essential for successful participant recruitment and retention in HIV prevention studies.
Outlook:
- Developing a coherent program of social science research can enhance the success of biomedical HIV prevention.
- Interdisciplinary collaboration is needed to integrate social science insights into HIV prevention trial design.
- Future research should focus on valuing and incorporating social science methodologies to address the multifaceted nature of HIV prevention.
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