75 million people have been infected with HIV, and 32 million have died globally. The WHO African region is the most severely affected, with 1 of every 25 persons living with HIV (WHO 2018). A scientific controversy arose in 1990 when Plummer and his team were studying sexually transmitted infections, including HIV, amongst a cohort of sex workers in Majengo, Kenya. Failing to remove the women from the sex trade prompted allegations of unethical research. I argue that the scientists in this study conducted ethical research, that the compensation provided to the participants was appropriate, and it was not the scientist’s responsibility to remove the females from sex work. This argument is presented using the GRACE framework and supported by Jennings paradigm, ethical justice and autonomy, power, exploitation guidelines, analyzing vulnerable populations, and benefit sharing.
Get the Whole Story:
The cohort of sex workers was established 35 years ago by the University of Nairobi and the University of Manitoba. In 1985 the Program identified the spread of HIV among the sex workers and designed studies from this observation. They discovered that some of the women were HIV resistant. They found that there was a potential harm in women who temporarily stopped working as they would rapidly lose their immune status making them more vulnerable to HIV when they returned to work. Another finding was that females with other STIs were at a higher risk of contracting HIV. Even though a cure for HIV has not been found, researchers have drastically benefited, as has the entire world, because the understanding of HIV has increased from this collaboration. Yet, the sex workers still have sex for about 80 cents, and since the beginning of the study have slept with about 50,000 men (Nolen 2007). The women who are ‘resistant to HIV’ are curious what benefits they will be receiving from this study, related to the transactional fair benefits model as even the creation of a vaccine will not be beneficial to all participants. As one woman stated, “get me a job and I’ll leave Majengo” (Nolen 2007). Professor Ngugi said “I feel very sad, sometimes you are not a scientist but a friend”. As scientists “[What] makes this group exciting is that the answer is already there and we’re just looking for it – not trying to find out if resistance exists”, said Dr. Fowke. Culturally, the women of this cohort struggled to receive adequate care prior to this study. These sex workers now have access to health education, free condoms, free treatment for STIs and reproductive health. Furthermore, the study cohort has evolved into a group that empowers women. Through the program the women have established a voice, for example, demanding that the men wear condoms, and they have reduced stigma and discrimination of sex workers within the healthcare system. The benefits seem plentiful; however, the women are still part of the sex trade and exposed to HIV almost every day.
In this cohort, researchers have professional and moral obligations to their study participants. However, there is a distinction between researcher and humanitarian aid provider. As a scientist, using the ‘western’ perspective of research, participation should only ever be altruistically motivated, so that those who contribute act for the benefit and interest of others (Lucas 2013). Legally the cohort study adhered to the Kenyan research guidelines and did not exploit these women with the benefits they received (Lucas 2013). The researchers also have obligations to their funders, their universities, and to AIDs research globally. The participants are obligated to no one, and their participation should be voluntary. However, the obligations of the participants become clouded, as this is a vulnerable population that faces a significant probability of suffering harm and lack the means to protect themselves (Arnason 2013). If they did not participate, they would not have access to healthcare. This jeopardizes participant autonomy, and liberty, as explained by Jennings, because of the use of power and influence over these vulnerable women in making a ‘voluntary’ choice (Mallia 2015).
Accept Responsibilities/Avoid Over-reaching
There would be no science if these women were not sex workers. So, did the researchers exploit these women by failing to offer them sustainable alternative employment? Is that the researchers’ job? There was an attempt by the researchers to train 120 women so that they could leave the sex trade. In total two thirds made the transition (Nolen 2007). Other attempts were not successful. One doctor stated, “we are doctors and poorly equipped to help effect transition for sex workers into other trades” (Lucas 2013). However, according to the social justice model the researchers have an obligation to address historical conditions of injustice within the communities that they research, as justice contributes largely to ethics (Jennings 2017). Further, the egalitarian liberalism requires that in research the least advantaged be made a priority, and in this study, this requirement is met. Appropriate benefits to the participants were also provided, within the constraints of an observational scientist’s role. Scientists also met obligations to the funders who have given them money to find answers. As one scientist stated “We’re a scientific group not a charity. It’s not a personal gain; it’s an international gain. We’re looking […] to develop a vaccine which will benefit globally” (Nolen 2007). There are levels of power influencing choices, and the liberty of this research. Specifically, the power of the scientist, the donors, the government of Kenya, and the economy of Kenya are all influencing the direction and benefit distribution of the research. Would it be as simple as removing these women from the sex trade? Or would it require the stopping of the trade itself? If these women are not sex workers will different women not fill their place? It is crucial to remember the goal of the research, and how much influence the researchers have in this context. By suggesting that researchers are exploiting these women, would they not be acting unethically by exuding powers that they do not have by attempting to remove the women from this trade? Would the researchers then be cast as ‘white saviours’? Furthermore, as time progressed the females in this study had an obligation to their community, without the study there would be no clinic to receive care from.
The proposed action of removing the women from the sex trade will have consequences.
Firstly, Relief of Oppression is a framework used in public health to help observational researchers work in conditions of injustice and deprivation to clarify ethical obligations (Lavery 2010). According to Lavery, Plummer followed the guidelines of this framework, in that the researchers constructed a clinic within the village that did not deny or discriminate against sex workers, a marginalized group, in receiving healthcare. Furthermore, Lavery suggested that with such complex social challenges it is not clear that the scientists have the expertise to implement an intervention to remove females from sex work (Lavery 2010). Secondly, based on their scientific findings, attempting to remove the women without full knowledge that the women would remain uninvolved in the sex work would be unethical. They found that when women took breaks from the sex work and returned, their chance of contracting HIV increased. Attempts to find employment outside of this industry could be harmful to the women if the transition out of sex work was not maintained. Moreover, the aim of this research study was to understand more about HIV, not to remove women from the sex trade. Although this might seem morally questionable, 32 million people have died of HIV, and that number will continue to grow if research is constrained.
Scientist taking on the responsibility of removing the females from sex work will likely be negatively viewed, as there have been objections already raised to this issue – turning observational researchers into humanitarian aid workers (Lavery 2010). However, the issue of proper benefit sharing amongst both researchers and participants is worth exploring in this case. Scientists need to find ways to share the benefit of scientific progress in a fair manner. One benefit sharing framework is the Nagoya Protocol. This could be applied moving forward for the females that are working in the sex trade if the researchers were to create a vaccine. There could be a payment of royalties, license fees in case of commercialization, or up-front payment (Arnason 2013). Non-monetary benefits would be to contribute to the local economy, research priority needs such as health and food security, food and livelihood security benefits, social recognition and joint ownership of relevant intellectual property rights (Arnason 2013).
In conclusion, it is not the scientist’s responsibility to remove the females from sex work, and the compensation for participation in the study was appropriate based on justice, benefit sharing and Jennings pillars of public health ethics, as explored through the GRACE framework. Opposing views emphasize the vulnerable population, that autonomy is hard to maintain, and that scientists in this setting need to do more humanitarian work. However, I argue and have supported that the research aims of this case were to study HIV, and that removal of sex workers is beyond the scope of a scientist and unethical to attempt.