Community Engagement as the Basis for Benefit Sharing in Variant Bio’s South African Collaborations
In the last few years, Variant Bio has partnered with academic researchers on two projects in South Africa. The first aims to understand how genes are regulated in different populations in Africa with Dr. Michèle Ramsay and the Africa Wits-INDEPTH partnership for Genomics studies (AWI-Gen). The second evaluates the genetic underpinnings of kidney disease in collaboration with Dr. June Fabian and the African Research on Kidney Disease (ARK) Collaboration.
In line with Variant Bio’s pioneering benefit-sharing program, both projects qualified for short-term benefit-sharing funds to be distributed among participating communities once sample and data collection for the studies was complete. Public engagement officers Simon Khoza and Jackson Mabasa carried out extensive consultations in the communities of Bushbuckridge (Mpumalanga Province in northeastern South Africa) and Soweto (a township of Johannesburg) where these studies were based to inform decisions around how the benefit-sharing funds should be distributed. In November 2022, they met in person with Gautam Mehta, VP of Partnerships at Variant Bio, to chat about their experiences with the projects. Highlights of the conversations are detailed below.
Gautam: Please tell me a bit about yourselves and how you got involved in these projects.
Simon (Agincourt study site): I have been the public engagement officer for Agincourt (where the ARK project took place) since 2008. I am a local guy here, I know people in almost all the villages. There are no clinics in my village so we all come here to Agincourt.
Jackson (Soweto study site): I was born in Soweto in 1978 and I never left until last year. Most of the people in office now are folks I went to school with and played sports against. It’s a community, like a lifecycle, a family of its own where values of respect are embedded. I started with research in 2003 and fell in love with it. I met Michèle from AWI-Gen because I assisted in organizing the event around community feedback for the first stage of the project and it was quite a success. So AWI-Gen was not new for me when I started working on this project.
Gautam: How did you carry out community engagement for these projects?
Simon: Well, I know that the tribal council meets on Tuesday and Thursday so I went to them and they gave me a slot to talk. I introduced myself even though they know me. Then I formed a WhatsApp group and used SMS messaging to reach out to people so they come to the meetings. It’s easy. At the community engagement events, I was the master of ceremony there but other people were leading the meetings: we had the Wits team (University of the Witwatersrand), the DIMAMO team (Population Health Research Centre), and the Community Advisory Team members sharing information about the study and benefit sharing. We told the people we had some funds and said, “How can we share this in your village? Can you come up with an idea?”
Jackson: Community engagement is not an easy task in Soweto, because to enter the community you need to go through the counselors, which became a bit tricky after the pandemic since they were working from home. When the counselors become convinced that your idea is not yet done and tested and needs to go back to the community, they usually do this at a ward meeting where they deal with complaints, service delivery for the community, and all that. I once attended one and the community people didn’t want to even listen to anything except the counselor reporting back to them around electricity outages because these were people who have been sitting in the dark for eight months. I managed to break the ice by saying, before addressing that, let me tell them the good news about this study that is going to take place in the community. Then we picked 50 people randomly from the participant database and asked multiple people in each area about their community, what needed to change, which organizations they supported, and why they chose those.
Gautam: How did you make the final decisions about which organizations should receive the benefit-sharing funds?
Simon: We discussed many things, a LOT of things! Oh it’s a lot! There were ideas to renovate schools, fix cement that wasn’t in good condition, buy chairs for the community. Part of the discussion of what to choose and how was that we needed each village to benefit and if we only did one school there was a potential tension. There are 31 villages in the whole region, maybe 120,000 people. So that more people could benefit, we decided to buy JoJos (water tanks). We got a few quotes and decided we could buy 55 of them.
Jackson: There were quite a lot of ideas of organizations and selection was not that easy. We wanted it to be fair so after acquiring all the profiles of organizations we did interviews to see how they impact the community. Also they had to be ongoing and accredited and have a website. In three months time we narrowed it from 18 suggestions to three. First we helped renovate the space of the Ratanang School for Children with Multiple Disabilities that supported the families of children with cerebral palsy, they needed new showers and equipment.
Second, we purchased medical and other supplies to expand and freshen up the Vakoma Home For Frail Older Persons, which looks after elderly people who were left uncared for when their families were working.
The last one really intrigued us: the Rhulani Mabasa Children’s Foundation just requested a ride-on mower. They had taken a field that was a dumpsite where people were mugged and wouldn’t even go through it at night. They turned it into an educational center, day care, and sports center where they offered unusual sports like golf and hockey. It took over a day to mow it with the hand mower.
Gautam: What were some of the challenges you faced in implementing the benefit- sharing projects?
Simon: It was tough to buy the JoJos and get them here and figure out how to distribute them. We looked at numbers and the bigger villages got more JoJos. Some vendors didn’t have all the documents they needed. We needed to deliver them in one place, so they came with a truck and delivered them here to Agincourt and there were lots of JoJos and everyone said “Wow! This is a big job!” I needed a trailer so that I could take two, one on the back and one on the trailer. All day I was busy doing that from morning to night. It took me three weeks.
Gautam: What kind of impact do you think the benefit-sharing projects have had in the community?
Simon: Some people didn’t believe that the JoJos would really come. When they came they were so happy, so happy. It’s been about three months since then, and they are using them and they are happy. But they still need more.
Jackson: Everything starts with a thought. For these ladies to start the cerebral palsy clinic for example, it is not an easy task to commit to. The work that they are doing, it’s rare. I personally would not wake up and say “I want to deal with this,” but they are dealing with it. I strongly believe they needed that leap of faith, that push, people indicating that we believe in what you’re doing, you’re such valuable people in the community. You are passionate about something that is for the best interest of the community.
Gautam: What did you personally learn from this process? How did it affect you?
Simon: I learned a lot from this one, involving people, talking with them, coming to agreement on one thing. I can see that people are really working hard on their communities.
Jackson: Variant Bio gave me an opportunity to explore, to bring change to the community. I am sometimes invited to church services and when you go there, they will make you stand and they say “We really appreciate what you are doing in the community.” And that alone really uplifts my spirits and makes me want to do more.
