Causing disruption of HIV prevention research norms: What can activism do?

Causing disruption of HIV prevention research norms: What can activism do?

Cults and Cabals exist in all societies. The research enterprise is not excluded. Fraternities exists in the research enterprise and many junior ones try to join these fraternities to enable them get privileged access to grants for their research work.

The lords of these fraternities try to sustain a rhythm of practice – they define research priority, and identify groups and individuals that get the choicest grants.

Sadly, the fear of the cabal makes many researchers silent –almost like coercive silence – and not push for changes that can otherwise improve the ethics of practice within the systems.

The HIV prevention research enterprise is not spared of this trait!

There are cults controlling every aspect of the life of the HIV prevention research enterprise – vaccine research, PrEP research, microbicide research, research involving adolescents. Some cults control the funding and some control the practice. Some cult members are more powerful than others. Some cult members are threats while others are work engines.

One group that can cause disruption in the norms of practice of the HIV prevention research practice is the activists. They can and should identify those practices in the research enterprises that are inimical to the safety and welfare of study participants, of communities that hosts research, and for governments that should institute practices that ensure access of its citizens to medicines and vaccines.

One area where disruption is needed is the issue of post-trial access to HIV prevention research products. Paul et al ( https://www.ncbi.nlm.nih.gov/pubmed/29487116) in their article published in the Journal of Medical Ethics showed clearly that over the years, the HIV prevention research enterprise has not done well to ensure sustained access to beneficial interventions for trial participants.

Sadly, without a disruption in the practice, the unsuccessful model will continue to be perpetuated. While research is not meant to address country level problems, it is expected that the huge resources invested in HIV prevention research could do more than providing tokenistic research outcomes.

Also of importance is the need to change perception about power dynamics and what partners can bring to the table.

Advocates have asked continuously for communities to engage with researchers in the design and implementation of research because they can add value to the research process.

Recently, Folayan et al (https://www.ncbi.nlm.nih.gov/pubmed/29490667) provided evidence that a structured engagement of community members can facilitate discussions about research designs. Community members consulted and engaged with HIV prevention research should not be limited to low literate members of the community. There are highly intellectual members of all communities who are educated enough to make critical inputs into the decision making process.

Community members engaged during research processes could be Professors, doctors, lawyers and a whole cadre of highly-educated persons who had spoken up for their community in the past and will willingly be glad to engage in conversations about research design and implementation for their community. We do not do more with investing wisely the dollars spent in researching for products acceptable by community members.

Disruptions will come with unease, threats, funding cuts and a whole lot more for activists. There is nothing new about these phenomena. But we all as activists must and should be ready to cause the needed disruption to end an era of tokenism in the way community members are engaged in the design and implementation of HIV prevention research.

As the cabal members justify their gains in the enterprise – and justly so – we need to see that participants, communities and countries who are invested in the HIV prevention research enterprise equally benefit from their investment: respect for their persons, assurance of long term safety of their health, community benefits for study participation, and post trial access to study products by countries involved in the research. Anything less is tokenism.


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