INTRODUCING RESEARCH ETHICS TO COMMUNITY PARALEGALS IN KENYA

From June 2021 to March 2022, I conducted teaching sessions to introduce basic research ethics knowledge to community paralegals supporting key populations in Kenya. This project was a requirement of my Postgraduate Diploma in Biomedical Ethics (PGD) from CBEC. I decided to develop sessions for community paralegals as they have become invaluable in resource-limited settings by helping marginalized key populations navigate legal challenges.

Although they constitute a small proportion of the population, HIV prevalence among key populations is much higher – an estimated 33% as against the general population prevalence of 4.76%. Evidence demonstrates that key populations have limited access to HIV prevention and treatment due to stigma, social exclusion, and broad criminalization of their activities. The criminalization of high HIV-risk behavior, such as same-sex sexual conduct, sex work, and drug use in Kenya, raises unusual ethical challenges that also affect research.

10 male and 10 female community paralegals from 12 organizations providing legal advocacy to sex workers, persons who use drugs, and men who have sex with men across six counties in Kenya, enrolled in the project. A hybrid approach was used, combining virtual and in-person sessions. This enabled discussions on critical areas requiring ethical consideration in research on vulnerable populations, with discussions on the informed consent process eliciting the most interest. While acknowledging the complexities in determining decision-making capacity – particularly among active drug users – participants agreed that it was inappropriate to assume that all drug users automatically lack capacity.

Another area that was largely contested was the researcher’s reporting obligations in the context of at-risk adolescent involvement in criminalized activities. The majority felt that such disclosure would negatively impact trust and discourage access to health services. The issue of incentives for economically vulnerable key populations was also hotly debated. Participants also discussed the impact of cultural and legal perceptions on the review and approval of research on sex work, drug use and same sex conduct. Feedback from participants indicated that the use of case studies, short video discussions and interviews made the sessions engaging and relatable. Participants agreed that the sessions helped them appreciate their role in empowering a highly researched population and resolved to disseminate research ethics awareness through their work.

This project has inspired me to advocate for improved mechanisms at institutional as well as national regulatory levels to enhance protection of key populations in research. With 32 research ethics committees currently accredited in Kenya, we are now establishing linkages for community paralegals to get involved as lay members who contribute to an understanding of the unique contexts of key populations.

To watch video click here: https://siut.org/bioethics/perspective-2/