Community Engagement in Turkana, Kenya: From Breakout Discussion Sessions to Breaking Out Dancing
Jambo — “Hello” — and Karibu — “Welcome” — were the first words I recognized upon arriving at the airport in Nairobi, Kenya last October. Words that warm your heart with the hospitality that Kenya is famous for. Having grown up in eastern Africa, I felt welcome and at home. Still, because this was my first field visit on behalf of Variant Bio, which places a strong emphasis on community engagement, it felt different from my previous work trips to the region.
A New Era of Community Engagement in Kenya and Beyond
Kenya is well known for its ethnic diversity — there are about 70 distinct ethnic groups known to live there. Kenya also hosts a large number of paleoanthropological records supporting the theory of the origin of modern humans in eastern Africa (see this recent article about the oldest known Homo sapiens).
While research on human diversity and evolution is nothing new in the region, it has to mature to include local stakeholders better. Today’s genetic studies leave Kenyan — and more generally African — populations severely underrepresented in existing databases. At the same time, genomic research in Africa should steer clear of “parachute science,” or a situation where well-funded international researchers engage with communities and local scientists only at a very superficial level and without developing equitable research collaborations across high- and low-resource settings.
For these reasons, I was excited and proud to be a part of the community engagement process for a project in Turkana, Kenya. Through this approach to genomic research, we aim to ensure that the communities we work with are engaged at all levels of the project, from study design to the return of results.
Turkana Health And Genomics Project
The project in Turkana, Kenya is a collaboration between Variant Bio and the Turkana Health and Genomics Project (THGP) led by Dr. Julien Ayroles, an Assistant Professor in the Department of Ecology and Evolutionary Biology at Princeton University, Dr. Amanda Lea, an Assistant Professor in the Department of Biological Sciences at Vanderbilt University, Dr. Dino J. Martins, CEO of the Turkana Basin Institute in Nairobi and a Research Professor at Stony Brook University, and a research team based at the Mpala Research Centre to the north of Nanyuki, Kenya.
The Turkana community is the second largest Nilotic group in Kenya, after the Maasai, and totals over one million people. They inhabit one of the most arid ecosystems in East Africa, with year-round mean daytime highs of 97F and rainfall that is both very low and highly seasonal. Historically, Turkana communities have coped with the hot and dry environment and the lack of readily available food sources through a nomadic, pastoralist lifestyle. Remarkably, 80% of their diet is derived from animal products of some sort and thus their diet has an extremely high protein content (3x more than WHO recommendations). This, combined with limited water access, causing intermittent dehydration, and high salinity content of water that is available (7x over WHO recommended levels), leads to significant stress on the kidneys. Preliminary evidence suggests, however, that Turkana populations don’t show any signs of increased levels of renal impairment; on the contrary, their kidneys are very healthy. The goal of this project is to understand any potential protective mechanisms behind kidney health, in the hopes of eventually making medicines that would help other people suffering from kidney disease.
The Turkana Health and Genomics Project was started by Drs Julien Ayroles, Dino J. Martins, and Amanda Lea four years ago. Their research initially focused on understanding what happens when populations suddenly transition to a novel environment that has little to do with the one they were adapted to. This situation has played out across the world, as populations rapidly transition from traditional lifestyles to urban settlements. Such transitions are commonly accompanied by increases in chronic disease risk such as asthma and metabolic syndrome, but the specific evolutionary and molecular mechanism underlying the phenomenon is poorly understood.
Recent droughts brought about by climate change, road construction, and the expansion of small-scale, globally-entwined market economies in northwest Kenya have prompted many Turkana to move to cities where they experience a radically different set of conditions, including exposure to new diets, activity levels, and pathogens, to list a few. The Turkana population presents a unique opportunity to compare the health of individuals leading an ancestral, pastoralist way of life versus individuals from the same genetic background leading an urban, industrialized lifestyle. The THGP is contrasting health biomarkers and genome-wide gene expression data collected from both groups, and Variant Bio is excited to bring a new health dimension to this project by focusing on kidneys.
Community Engagement in Kenya: Outreach, Consultation, and Invitation
As remote or dispersed as the Turkana population in northwest Kenya is, Variant Bio — together with the THGP — is dedicated to bringing people together not strictly to inform or educate them about this new phase of the Turkana Health and Genomics Project, but most importantly, to listen to them and act upon their feedback. Community engagement represents an opportunity for stakeholders to participate in study design and discuss health issues and problems that might be addressed through this research project even if indirectly.
Initial engagement for the project started four years ago when Drs. Ayroles, Lea, and Martins made contact with Turkana communities through the Turkana Basin Institute. They worked with local leaders and organized small engagement meetups everywhere they planned to recruit participants. These meetups covered all relevant information about the project (and a requisite goat roast) and allowed the research team to build an initial network of leaders, elders, healthcare workers etc., that slowly spread throughout the Turkana region.
For this newest iteration of the project, we decided to try something different. The team on the ground in Kenya invited a group of Turkana community representatives to participate in a two-day workshop at the Mpala Research Centre. Mpala catalyzes and disseminates interdisciplinary and high-impact research on the most pressing issues of our time, especially those related to the environment, sustainability, and human development. The Centre is managed by Princeton University in partnership with the Smithsonian Institution, the Kenya Wildlife Service, and the National Museums of Kenya. Because hearing from diverse perspectives is key to community engagement success, we invited youth leaders, women leaders, elder and religious leaders, clinical and administrative officers, village elders and administrators, and chiefs. In total, 15 Turkana stakeholders participated in the workshop, including four women and eleven men. We designed an involved program offering introductions to the newest collaborators on this project, accessible information about genomics, a detailed explanation of the newest phase of the project, and return of results from previous project iterations. For example, Drs. Lea and Ayroles, along with graduate student Audrey Arner, worked with scientific illustrators to prepare graphics to help community members understand genetic concepts, the goals of the study, and what will and will not be done with their data. All of the workshop sessions were run in and supported by written materials in English, Kiswahili, and Turkana.
Later, a variety of topics were covered in the break-out sessions led by the Variant Bio team to answer community questions and concerns about the study. These included group-level introductions, feedback and feelings about the project, handling of samples and data, and discussions about best venues for communicating research progress and results (e.g. recorded presentations, virtual venues, radio broadcasting, social media, etc.). Furthermore, the sessions involved conversations about health concerns and priorities that might guide the scope of Variant Bio’s benefit-sharing program. The community leadership was also very interested in some study results, e.g. rates of tuberculosis and water salinity in local water wells. As much as scientists may think about results from a perspective of genetic findings, leaders here prioritized information that can help them acquire additional funding from their local governments — in this case for infectious disease treatment and water desalination infrastructure.
To give stakeholders a concrete sense of what the research is about, we also designed demo sessions covering all study design steps and devices. We believe that these sessions contributed significantly to the success of the community engagement event. They allowed community leaders to better understand what the phenotypic measures are for, as well as their importance to this research and their future health and wellbeing. They also offered another opportunity to address stakeholders’ questions and concerns about the study. Community members also got to test all the different measures on themselves after an initial demonstration performed by the Mpala project team consisting of a nurse, an ultrasonographer, research assistants and laboratory technicians, and Variant Bio’s biomedical engineer Dr. Molly Blank.
Finally, community engagement concluded with some time to make more low-key connections and build friendships. The centerpiece was a goat roast on a cliff overlooking Mpala conservancy lands and an open dinner buffet, including delicious local dishes such as cooked spinach, vegetable curry, ugali (white maize porridge), and chapati. Following the feast, everyone enjoyed traditional Turkana dancing that filled the space with a festive spirit. The hyena laughter and eyes blinking in the dark didn’t let us forget that we were all guests on that land.
While many biomedical studies in Africa lack a robust strategy around community engagement, at Variant Bio we consider this a critical component of research, and one that is part of an ongoing process. This project’s engagement will continue locally throughout the vast Turkana region before every recruitment trip and more centrally during one of the biggest cultural events for the Turkana community — the yearly Turkana Fest(ival).
We are very fortunate to work with research collaborators equally committed to incorporating and addressing the views of local communities, and hope that such an approach continues to gain ground in Africa and across the globe, particularly when working with Indigenous populations. As one Turkana stakeholder said, summarizing the impact of the community engagement events we held: “We are thankful to Variant Bio and the Turkana Health and Genomics Project for feeding not only our stomachs during this event, but also our minds about the importance of Turkana genomic research to our people’s health.”
