Co-creating a Genomics Project Benefit-Sharing Plan in Madagascar
Note: This post summarizes the contents of a poster and talk presented by Variant Bio’s research collaborator, Dr. Rindra Rakotoarivony, at the American Association of Biological Anthropologists (AABA) Annual Meeting, held between March 23-April 1, 2022.
I’m a biological anthropologist, working in my home country of Madagascar. I’m currently a lecturer at our country’s foremost research institution, the University of Antananarivo. I’ve always been very interested in human evolution, and recently I had the opportunity to design a research project with Variant Bio about Madagascar’s genetic diversity. I was first introduced to the Variant team through mutual connections from Penn State University, where I was a human genetics research assistant for the anthropology department in 2015–16. Although the COVID19 pandemic prevented us from meeting in person, through conversations over Zoom and email with Variant’s CSO, Kaja Wasik (a molecular biologist), I immediately recognized that we shared the same values around how to conduct research studies with human participants.
Throughout my career, I’ve only been able to discuss the benefits of research with potential study participants in vague ways. We say things like “participating in this study will help science” or “may eventually lead to a cure” when, practically, my community’s needs are more urgent. This is true not only for Madagascar, but for research carried out in other lower-income countries by researchers from wealthy countries such as the United States.
In discussing a potential project with Kaja and learning about Variant’s groundbreaking benefit-sharing program, I realized for the first time that we would have a real opportunity to make sure that participants are fairly compensated for their role in genomic studies. For too long, community input about study design, the study results, and the resulting potential benefits from a study have seldom been shared with participants. This exclusion of participants has caused real damage to communities (see this article for examples from the US). However, I recognized that I could change this approach by partnering with a pioneering and ethical industry partner such as Variant Bio.
In 2020, a team made up of myself and colleagues and graduate students from the University of Antananarivo’s Department of Anthropobiology and Sustainable Development formed a partnership with Variant Bio to carry out a project on Madagascar’s genetic diversity (see here for further details on the project). We aimed to collect health information and genetic samples from study participants in different regions of the country to understand the relationship between genetics and disease in Malagasy populations.
From the outset of our collaboration, Variant Bio committed to funding community engagement so as to find meaningful ways of sharing the benefits of the project both with our team of Malagasy researchers and the study’s participating communities (see here for more about Variant’s overall approach to benefit sharing).
Between December 2020 and February 2021, we carried out three weeks of community engagement in three different locations across Madagascar. We met with community leaders and ordinary citizens to explain the goals of the project, assess local interest and study feasibility, and discuss any ideas, questions, or concerns that people might have.
We also gathered input from community members about the most meaningful initiatives that Variant Bio might support as part of its benefit-sharing program. For example, some community members focused on the need to improve medical facilities, while others highlighted the need for clean drinking water or better school infrastructure.
Once we returned to the University of Antananarivo, we analyzed the data captured during community engagement and drew up a list of the five most commonly cited problems across the three locations: lack of access to public toilets, lack of clean drinking water, lack of school infrastructure, deforestation, and the need for language training.
Next, in August and September 2021, having secured the relevant ethics approvals for the study, we returned to the field for the second phase of the project, this time to collect biological samples and health information from study participants. We also surveyed study participants to find out which initiatives they preferred to support. Each study participant was presented with a list of the five key areas of unmet need we had identified during community engagement. We then asked them to vote on the one they considered most important. In total, we had 257 responses from across the three locations, and when we reviewed the answers, we found that lack of clean drinking water and the need for better school infrastructure received the most votes.
Variant Bio then worked with our team to figure out how we could practically address these issues and in a timely manner that still fit within the project’s benefit-sharing budget. Specifically, Variant gave funds to rebuild a water pump in Tsianaloka Village on the West Coast, to buy roofing materials for a new high school going up soon in Tsiandatsiana Village in the Southern Highlands, and to provide a new roof and cement for a school in Ampandrialaza Village in the Central Highlands.
Variant Bio spent the rest of its short-term benefit sharing budget on improving the scientific capacity of our Department. With these funds we were able to purchase lab equipment, which going forward will allow us to train more students in field methods and sample collection.
In the end, by co-creating a short-term benefit-sharing plan from the outset of our study with Variant Bio, we made sure that: 1) communities in Madagascar received concrete, immediate benefits for participating in the study; 2) participants had a direct say in the initiatives that Variant supported, instead of just being on the receiving end of top-down funding decisions; and 3) our research capacity at the University of Antananarivo increased. There is no doubt in my mind that compensating partner communities through benefit-sharing programs such as this is an important step in making genomics research around the world both more ethical and equitable.
