Returning Results in Practice: An Example from Madagascar
From its inception, Variant Bio has been highly intentional about consulting with communities prior to embarking on projects and sharing the benefits of research with those who choose to participate. At this stage of the company’s four-year history, we have kicked off over a dozen genetic studies spanning geographies in Asia, Oceania, Africa, North & South America, and Europe. In several instances, we are now at the point where we have results to share from these studies. As part of our ethics-first approach to research, we are committed to long-term community engagement and returning results first and foremost to the people who shared their data with us.
But what does returning results from a genetic study look like in practice? Last month, I had the opportunity to join collaborators from the University of Antananarivo to return results to participating communities (learn more about the original study on genetic diversity in Madagascar). Together, we traveled to villages on the west coast and in the country’s central highlands.
Because these villages were only accessible by unpaved road, and the roads themselves turned into mousse whenever it rained, reaching them from the capital required significant time and effort. On more than one occasion, we had to stop en route when our car broke down, came across a pack of zebu (cattle) crossing the road, or else got stuck churning its wheels in the mud.
At this point, you might be wondering — was there not an easier way to go about this? Or why was it so important to deliver results in person anyway? Couldn’t we just send a report in the mail or set up a conference call with village leaders to discuss the results?
While it is not always logistically feasible or imperative to return results face-to-face (see this article on the potential acceptability of sharing results via online modalities, for example), scholars generally agree that returning results to participating communities is a critical component of ethical research and a necessary step toward combating extractive research in Africa and beyond (for more on this topic, see examples of returning genomic research results in Kenya and the perspectives of participants in a genomic research study in Uganda).
In the case of this particular study, however, returning results via digital means was simply not an option. The villages that participated in the research lack electricity, as well as regular access to the internet. Literacy levels are also generally limited. Most importantly, though, is the fact that during the study implementation itself, the research team promised participants they would return approximately a year later to share results face-to-face. If we had not kept our word on this matter, we would not only have committed a serious disservice to the people who participated in the study, but also contributed to distrust in genomic research more generally.
Here, it is important to clarify just what we mean by “results.” There are different types of “results” that can be returned for any given project, e.g. genetic, epidemiological, clinical/medical, anthropological, etc. The exact details of what will be returned will depend on the project design (what type of data was collected), relevant findings, and most importantly the participating population’s input and priorities.
In terms of genetic data at Variant Bio, for all of our studies, we return only population-, not individual-level, results. This is mainly due to the fact that the genetic sequencing techniques we use are sufficient for research purposes but not accurate enough for clinical (meaning medical/diagnostic) purposes. For this reason, and to avoid potential confusion among participants, some scholars suggest that in the case of population-level genomic findings we shouldn’t even be talking in terms of returning results; instead, we should frame the process as “knowledge sharing.”
Concretely, then, what did knowledge sharing with the participating villages in Madagascar look like? First, village leaders gathered residents in a common public space — for example, a school or a central square — so that we could introduce the research and summarize the study more broadly (e.g. what the purpose of the study was, how many people participated in total, where the benefit-sharing funds went for the different sites, etc.). Then, still following a more general presentation format, we briefly discussed how genetic research works, and what kinds of population-level ancestry results we could confirm through this study — namely, that the community we worked with on the west coast has higher African ancestry, while those in the central and southern highlands of Madagascar have higher Southeast Asian ancestry. We also discussed broader health information generated by the study (e.g. the percentage of participants at each study site who reported using mosquito nets, the most commonly self-reported health complaints, etc.).
Following this overview of the study for a larger audience, we moved into separate break-out sessions, where various members of the research team had the chance to delve deeper into particular points of interest or answer questions raised by individual community members. By splitting up into smaller focus groups, we found that people were more likely to raise concerns or questions about the research, and that we had more time to address them. This approach also ensured that people of different ages and genders could participate just as easily as, say, village elders or authorities.
Examples of the kinds of questions community members raised at the different sites included:
- Do Indonesians know they have descendants in Madagascar?
- What’s the next step, will you continue research here?
- Will the medicines you develop stop the next generation from getting the disease?
- Will the medicines you develop from our genetic information be available to us?
- Do other people have access to my personal health results?
As a last step, after wrapping up break-out sessions with community members, we delivered printed copies of the results discussed to village authorities at each site so that they could keep them for reference and follow up with us if needed.
In the end, returning results in person in Madagascar also presented opportunities for the Variant Bio team to gain a deeper understanding of the impact of our benefit-sharing program in practice. While we were at the various study sites, we dropped in to see how initiatives had taken shape since the team disbursed benefit-sharing funds — for example, how much the water pump in one village was being used, or how the newly repaired school roof in another village was holding up. This allowed us to identify both challenges and successes in the practical application of benefit sharing.
Lastly, the results return process presented an opportunity for further capacity-building on the local level. For example, before setting off for the west coast, I had the chance to share my experience around ethics in genomic research and the practical application of anthropology during a larger talk for students at the University of Antananarivo. Most importantly, the graduate students involved in returning results were able to hone their skills leading focus groups, interpreting Malagasy into French and English, and translating genomic and health results into accessible terms — thereby gaining valuable practical experience and training.
Going forward, results return/sharing knowledge is sure to be an integral phase of the various projects Variant Bio is involved with around the world. While each context will present different factors to consider, a common theme applies across geographies: results return is part and parcel of community engagement and to establishing ongoing, trusting relationships wherever genomic studies take place.
