By Morenike Folayan

In the last several decades, there have been huge investments in the HIV prevention research enterprise. There have been investments on HIV research through the National Institute of Health (NIH), the European Union, Bill and Melinda Gates Foundation and a host of other donor agencies. These investments run into billions of dollars annually.

In the HIV prevention research enterprise, the industry provides employment for members – supportive personnel, laboratory, fieldwork, pharmacy, and administrative staff.

For ethical reasons, however, participants are described as volunteers because to position them otherwise could be considered undue inducement. Yet, the entire business empire is dependent on the participation of these volunteers.

Trial participants are expected to understand their role as purely altruistic, despite risks or benefits that may be associated with their ‘short-term engagement’ in the industry.

Frequently, they receive reimbursement for their transport and some compensation for time expended. These reimbursement and compensation packages are adjusted to local wage standards otherwise it would be considered as ‘undue inducement’ that may lead to coercion –  something considered unethical.

Paying research participants commensurately for the service they provide is also assumed to be unethical because the compensation of benefit remuneration model is assumed to promote voluntary and altruistic participation in research, and in so doing, create a research subject free to withdraw from research participation.

Volunteerism is assumed to enable participants to think critically about the research and to participate free from consideration of personal benefit and gain.

Unfortunately, this is rarely the case in many communities in Africa where HIV prevention research is conducted.

On the other hand, trialists’ interest is often the search for knowledge accompanied by interest in secondary benefits such as publications, career advancement, institutional recognition, and financial support for their research.

While scientific work is often regarded as benevolent contribution to the public good, the enterprise of research most definitely provides some with a source of income. In a clinical trial, employees are not framed as volunteers. They are paid commensurately for their time and effort. They profit from the research enterprise.

By using a labour market perspective, Folayan and Allman argued that clinical trial participants may be understood as workers and are entitled to payment for their labour.

This will open up spaces to consider ways to link global health to the economic empowerment of individuals. Recognizing volunteers not as participants but as ‘workers’ has the capacity to widen the discourses on bioethics as a relevant and powerful counterweight to the injustices of the world today.

The HIV prevention research enterprise can do a lot more to change the paradigm of practice. Community actors and representatives can be engaged as equals in the design and implementation of research.

Power differences between Northern partners invested in the off-shored research and local participants need to be acknowledged and addressed.  HIV prevention research are conducted in communities where poverty, race (whiteness of the HIV prevention research enterprise), gender differences and human right abuse are real and do inform participants’ engagement with research.

HIV prevention research can therefore not simply focus on its biological interventions: it needs to contextualize the social disparities that can otherwise skew the outcomes of the research like it has done for several years.

For an industry where net gains are required to significantly reduce the HIV incidence in Sub-Saharan Africa – the main host of HIV prevention research – paradigms of practice have to change. Community members have to be duly acknowledged as co-labourers in the industry and duly accorded the needed rights and respect.

Folayan is of the Nigeria HIV Vaccine and Microbicide Advocacy Society