Applying an Indigenous Perspective on Community Engagement to Genomics Research at Variant Bio
For decades one of the most important aspects of biomedical research with human subjects — community engagement — has been neglected. I come from a background in Indigenous health research, and throughout my life I have been actively involved with my tribes, the Cherokee Nation and White Mountain Apache Tribe. In the context of research among Native American communities, especially genomics research, there is a long history of abuse and extractive practices. At Variant Bio, we are actively working against that history, a big part of which means working directly with communities. Most recently, for example, we have begun a process of community based participatory research (CBPR) in Indonesia together with our collaborators at the Mochtar Riady Institute for Nanotechnology (MRIN).
When I personally reflect on community engagement, I think about my own people and the tribes I have worked with across the United States. Every tribal group is distinct and unique, each with its own specific processes for communicating with leadership and other members of the community. Before beginning community engagement, I think about things like how news travels through rural areas vs. infrastructure-rich settings, how different cultures conceptualize the individual vs. the collective, and how to reach and understand as many perspectives as possible. For example, I want to ensure that I’m hearing from both men and women, from elders and youths, and from people from a range of different professional/educational backgrounds. Each person has a different idea of what is important and has unique cultural knowledge that contributes to what the group is as a whole. Language is also an essential part of reaching everyone, and it’s important to make sure that everyone has the ability to communicate in the language they know best. Ideally, I would want to hear how each and every person in a given community perceives topics around genomics research and to inform them about what to expect from participating, but it’s almost never possible to speak to everyone.
In Native North America there are myriad opinions on topics ranging from what is appropriate to study, the significance of biological samples, and stewardship of data. Using my knowledge of these different opinions I work with community leaders and cultural guides until I broadly understand specific topics. It would be impossible to grasp the nuance from every culture and person without spending a lifetime as a member, and so I am always looking for liaisons and collaborators. The more I learn from the community the more I can include their viewpoints into the study design and this creates a more transparent partnership.
In the context of a project in Indonesia I am now involved with at Variant Bio, an example of this kind of collaborator is Professor Ketut Suastika, MD, PhD (Prof. Suas) of Udayana University, Bali. Prof. Suas is the President of the Indonesian Society of Endocrinology and he was born and raised in a village that may become part of a larger study to be carried out by Variant Bio and MRIN across Indonesia. He has been a longtime collaborator of Dr. Herawati Sudoyo, our partner from MRIN who heads the Genome Diversity and Diseases Research Group there. Prof. Suas is knowledgeable about the health, culture, and methods of contacting the authorities in this village. I first had the opportunity to meet him when I traveled to Indonesia in April of this year to observe the team’s community engagement process in Bali.
Connections built on trust and experience are essential for doing community engagement well. As outsiders to Bali, our team from Variant Bio and MRIN (based in Tangerang, near Jakarta) relies on people like Prof. Suas to help us navigate the complexities of local cultures and beliefs. A great example of this is when Prof. Suas invited us into his home, where we would be speaking with local authorities and leaders. He explained to us about how his relatives and ancestors had been carvers of wood and stone in the village and had built his home. The home had served as a makeshift clinic before there were more modern healthcare facilities in the area. While waiting to speak with the village leaders he took us to a beautiful temple that his family had helped construct and still helps maintain. This local knowledge and personal stake in the community is exactly what we are looking for to carry out effective community engagement. Through Prof. Suas’s local understanding of Bali, MRIN’s knowledge of Indonesia at large and experience carrying out biomedical research with various ethnic groups across the country, and Variant Bio’s focus on community based participatory research, we will be able to return to the village and understand what the community’s needs, wants, and concerns are before samples and health information are ever collected.
At Variant Bio, we recognize that every geography is different and there is no one-size-fits-all solution to community engagement. However, by combining experiences and input from our partners in Indonesia and elsewhere, as well as from Indigenous thought leaders such as myself, we are actively working to inform and improve our approach to genomics research with underrepresented populations around the world.
