Health Research with Key Populations: A Discussion on the Role of Research Ethics
In June 2016, we became Global Health Corps fellows. We were placed at the Ministry of Health in Zambia, and we were excited and nervous to join the research unit as senior research associates and to be exposed to various programs and stakeholders within the Ministry. We quickly learned our role also included being part of the Secretariat for the National Health Research Authority (NHRA). As a regulatory body established by an Act of Parliament, the Research Act No. 2 of 2013, the NHRA regulates all health research activities conducted in the country. We were not just participating in the development and implementation of research programs, but also playing a key role in helping this regulatory body function and uphold its mandates.
This experience was incredibly educative and thought-provoking. As young professionals in public health, we deepened our understanding of health research ethics as we navigated a new work environment and coming from our two different cultural backgrounds. Here are our reflections on what we learned and how it has helped to mold us into stronger researchers with a critical lens for ethics:
Perlita: So we both have studied public health in school and have worked with non-profit and academic institutions on research studies in different capacities, but what is your understanding of health research ethics?
Kutha: I had learnt about ethics in class but I feel like the full extent and implications of ethics of research was not fully emphasized, that is why working under NHRA this past year has been very insightful and helped me contextualize what research ethics really means.
Research ethics to me entails having a researcher conduct themselves in a morally right way, it means a researcher taking responsibility of the research participants and ensuring that no harm is caused to participants instead the research should benefit the participant or community
Perlita: I had a similar experience — research ethics was taught in my schooling, but I really began to appreciate it more when I began working and I had to report to and interact with the university’s institutional review board (IRB). The IRB, similar to the Zambian Research Ethics Committees (RECs) emphasizes ethical considerations to be made when carrying out research. I understand that as a researcher, I have a responsibility to protect my study participants and ensure their information, samples, and valuable experiences are protected through my study’s procedures. In the US, protection of participants and ethics are even more emphasized and protocols are more scrutinized when a study involves key or vulnerable populations.
Kutha: Exactly! I do agree that research involving key populations is given much more attention and scrutiny in Zambia too. However, I feel that the definition of key populations is not exactly consistent. For instance, the Health Research Act No. 2 of 2013 identifies key populations or vulnerable groups as prisoners, pregnant women and persons with disability. However, the National AIDS Council in Zambia in its strategic plan identified Men who have sex with Men (MSM). Who constitutes key or vulnerable populations in the US?
Perlita: I am familiar with the groups that are often considered key populations like sex workers, injection drug users, and men who have sex with men (MSM), and I think they are acknowledged in the US. The IRBs I worked with would also ensure any protocol that includes prisoners, undocumented individuals, children and people living with HIV/AIDS would undergo a full board review and protocols required explicit procedures of how these groups’ anonymity and status would be maintained. I think it’s great that extra protections are in place to protect these groups from exploitation. After our fellowship year I’m more familiar with the definition of key populations like you explained earlier. I’ve also learned during my time here that MSM activities are illegal according to Zambian law. So, how was it for you to learn about these key populations, especially MSM in this cultural context?
Kutha: Well, I have lived my entire life in my Country, and growing up, MSM was not a topic of discussion and I would have never thought of the link between MSM and Public Health. I believe this might be the case for most Zambians. Coupled with this, the Penal code, which is the mother law, prohibits acts of MSM. Zambia is also mostly a Christian nation, and so there are so many factors in play, from cultural to religious to legal factors. However, looking at it from the ethical perspective, that brings in a different angle, which is the essence of this discussion.
Perlita: I agree. Before coming to the Ministry of Health or to Zambia, I had never thought about what it meant to research or investigate issues faced by a group of people that are considered illegal or are not recognized by the government. For example, in the US, we have individuals who are undocumented or individuals who use illegal substances; however, research is often conducted with these groups in the name of public health in order to understand and improve their health and the public health of the communities they interact with. How do you see that ethics plays a role in this scenario considering the Zambian context?
I am proud of the research regulations in place in the US that allow the research of these groups engaging in “illegal” behaviors because it is prioritizing their health and the health of the population over politics.
Kutha: I think Zambia as a Country has not made a formal stance regarding research in certain key populations. For instance, sex work is illegal in the Country but there is a lot of published research about this group. So as much as this gets special attention at ethical review, it is usually not as controversial as MSM. I know of some other countries where MSM is illegal but there are public health programs for MSM such as India. Tanzania previously had a clinic for MSM to cater for their needs but this was recently closed down. I think Zambia has never formally looked at research on MSM. However, this past year working with researchers, I have noticed a couple of differences in our regulations regarding MSM. For instance, the Health research Act No. 2 of 2013, which is the governing act on all health research conducted in the country, does not explicitly identify MSM as a vulnerable population but it also does not explicitly prohibit research in MSM. The Penal code similarly prohibits the act of MSM but does not explicitly speak to research in MSM. I think the main reason research in MSM is such a controversial topic in Zambia is that it is interpreted as encouraging MSM when the mother law prescribes it as illegal.
Having spent this past year working with research ethics, how would you describe your experience dealing with the differences in law and culture regarding research in MSM?
Perlita: I think that that the interpretation that conducting research with the MSM community equates to encouraging MSM behavior in violation of Zambia’s mother law is the very crux of the dilemma. It has been personally hard for me and I’ve struggled with this issue since I do not interpret the law this way and also acknowledge the different inconsistencies in the laws you pointed out. In any case, I do think that we as a public health community have a responsibility to encourage research on issues impacting populations that are being disproportionately effected, regardless of sexual orientation or any individual attribute. I think it is unethical to ignore the issues faced by populations and is a matter of health inequity to not investigate solutions to improve their heath. The Zambian National AIDS Council’s strategic plan’s inclusion of MSM was a bold and positive step in the right direction. I hope that other key stakeholders in the health sector can look to the benefits of researching issues within the MSM population instead of shying away due to personal and political views regarding the issue. What are your final thoughts on this and for the state of research in your country?
Kutha: I think in Zambia, this is a moral dilemma but it is important that regulators really look at this topic and find a viable ethical stance on dealing with research in MSM with its particular influence on public health. We have to look at the benefits and the potential risks in making a decision, because these are the underlying principles of ethics.
Perlita Carrillo and Kutha Banda were 2016–2017 Global Health Corps fellows.
