The Importance of Community Engagement in Genomic Research: Takeaways from a Project in Indonesia
“Tak kenal maka tak sayang” is a common proverb in Indonesian that loosely translates to “you can’t care for people you don’t know.” It is a beautiful reminder to get to know people without prejudice in order to build lasting relationships and trust. I believe this is an apt saying to highlight the importance of robust engagement when starting community-based biomedical research.
For the past two and a half years, Variant Bio and researchers from the Mochtar Riady Institute for Nanotechnology (MRIN) — where I am based — have been collaborating on a pilot project to study the genetic diversity of populations in Indonesia that are underrepresented in the global genomic and health database. We aim to identify novel and disease-associated genetic variants as well as obtain insights into the genomic architecture, phenotypes, and disease epidemiology of Indonesian populations, which could be used to inform precision medicine initiatives (diagnostics and therapeutics) in the future. This is not a feat to be taken lightly. Prior to this collaboration, our team at MRIN had experience working with more than 70 communities in Indonesia covering a range of different geographical landscapes, cultures, languages, and faiths. We understand that transparent communication and trust-building, as well as community involvement, are crucial to ensuring the success of genomic research among diverse populations. Thus, we were excited that Variant Bio, in its various projects around the world, prioritizes community engagement before any sample collection takes place.
Community engagement, also known as community consultation, is a process that involves engaging members of a community in the discussion of a project’s research team, proposed research plan, purpose of the research, consent process, confidentiality, and benefits and risks of the research, in each case using accessible language and avoiding scientific jargon. It is also about actively understanding a community’s diverse perspectives without judgment and responding to any comments and suggestions. Community engagement is the very first step toward establishing a respectful and mutually beneficial research relationship. It is considered one of the most important aspects of the ethical conduct of biomedical research, and is something I have been actively involved in throughout my time on the Variant Bio Standley Fellowship. Together with Variant Bio, our team is also pioneering a structured, co-designed benefit-sharing program for participating communities, which we highlight during the engagement process.
Beginning in early 2022, our team from MRIN consulted with communities across six different sites representing western, central, and eastern Indonesia: the Dieng Highlands in central Java, the northern coast of Bali, the southern coastline of Sikka and the city of Maumere in Flores, Banjarmasin in south Kalimantan (Borneo), and the Sentani Lake area of Papua. We adapted our approach according to the different sites and communities (see here for an example of the community engagement process in Bali). Consequently, we do not proceed if a community does not show any interest or declines to be involved. Below, I reflect on some of the key takeaways that our team learned based on community engagement carried out across Indonesia.
Having a local guide (or guides) is important
Entering a new community is never an easy task. Suspicion and skepticism are to be expected. “Who are these strangers?” “What do they want from us?” “Why are they interested in taking our blood?” Thus, having a local guide that can help interpret the research and bridge conversations according to the local culture and in the local language is very important. Our team utilizes our existing network so that we can start via the right point of contact for every community.
We would not have been able to do successful community engagement and subsequent sample collection without these local guides. We were fortunate to be connected to the right people from the very start: from a community development leader in Dieng and doctors in Bali, Banjarmasin, and Flores to a literacy activist in Papua. They are either members of the community themselves or have had extensive experience working with the community, so they speak the most appropriate local “language,” both literally and figuratively. Having such trusted figures supporting our team connects us to the community much faster and prevents unnecessary miscommunication.
Involve as many stakeholders as possible
In every community engagement session, we always tried our best to involve as many community members as possible. Generally, communities in Indonesia are very communal, especially in the more rural areas like the ones we visited. Thus, we typically invite senior citizens, village authorities, women’s groups, youth groups, traditional customaries, representatives of religious entities, local organizations, and other community stakeholders. It is important to ensure that communities — represented by around 150 individual participants who meet the research criteria — agree to participate. For instance, we often get asked why everyone in the community can’t participate, and the engagement session is the perfect space to explain the limitations of the research. Then people go back home and explain this to their family and peers (word travels fast!). Involving as many stakeholders as possible is also a good way to gain the perspectives of people from a wide variety of backgrounds within the same community.
Foster open dialogue with communities
Community engagement sessions enable dialogue between us, the researchers, and the communities that participate in research. For example, in Dieng, right after we introduced ourselves and the purpose of our visit, members of the community vocally shared their concerns regarding the community’s health. There were questions about regular physical check-ups that we eventually forwarded to the local clinics. They were also concerned about their daily exposure to harmful pesticides as the majority of people work as potato farmers, and they asked if we could do something about it. We proceeded to add a cholinesterase test to check for pesticide residues in their bodies. Similarly, we added a blood test on ferritin levels in Banjarmasin where the village we worked lies on a peatland that is suspected to have high content of iron in the water source. Many interesting conversations with communities also strengthened the science underpinning the study. For example, we consulted with representatives of a Bajo community in Flores when creating a questionnaire to capture the impact of their exceptional freediving lifestyle on their health. Such dialogue opens up more information on various health determinants (whether cultural, social, biological, or lifestyle-related) that give us broader perspectives when fine-tuning the health interviews and assessments, and later when interpreting the genetic results.
Work on maintaining long-term relationships
To capture the diversity of the world means researchers should establish good relationships with individuals and communities who are at the heart of research in population genetics. The involvement of a community does not end after their samples have been taken. Helicopter research that was common in the past, i.e., researchers taking samples and never returning the results, must be avoided at all costs.
In contrast, we as researchers are obligated to return medically actionable research results afterwards to participants and inform the broader community about the output or any impact of the research. Immediately after we received the blood and urine biochemistry test results, we returned them to each participant complete with interpretation from a doctor, free of charge. Participants can then use these to follow up at nearby clinics or hospitals should the results indicate alarming health conditions (such as high blood glucose, high uric acid, signs of liver disease, etc). Meanwhile, the genetic analysis may take longer and thus the group-level genetic results will be returned once they are available (within approximately two years of sample collection). Since the genetic results are research-grade only, they are not accurate enough for medical or diagnostic purposes, and thus we do not return them to individual participants.
Additionally, for a pilot project like the one we did with Variant Bio, a project expansion involving many more participants is also a possibility and obviously requires a good relationship with the community.
Without a doubt, successful community engagement leads to research that is much more mutually beneficial. From our experience, actively seeking a community’s input regarding the research is crucial. It not only strengthens the interest of individuals to participate, but also ensures the involvement and input of diverse local stakeholders. In the end, we learned a great deal from each of the different communities we worked with in Indonesia, and look forward to building on those relationships in the years to come.
