The Academic Researcher: Sugar for the Sea Islands
—By Stephen Pelletier, special to the Reporter
The Sea Islands Genetic African American Registry project (Project SuGAR) has been a significant investigation as much for the way the research was conducted as for its noteworthy findings. A now-classic example of community-based research, the project engaged members of the Gullah-speaking African American population from the Sea Islands of South Carolina in research on Type 2 diabetes—what the Sea Islanders call "sugar."
Having endured relatively little outsider immigration, the Gullah population is genetically the most homogeneous population of African descent in the U.S. Because of this isolation, Gullahs have successfully preserved much of their rich and unique culture. But there have also been negative effects.
One is in the practice of medicine. A lack of education about modern medicine—and perhaps even some suspicion about it—is pervasive. The Gullahs sustain a culture of root medicine that predates slavery, and medicinal roots are widely available for purchase. Before Project SuGAR, health awareness of diabetes was low. Researchers reported hearing those with the disease say things like "I have a touch of the sugar."
Research during Project SuGAR suggested genetic reasons why the Sea Island population has a higher incidence of diabetes than the general population. The work also identified a gene variant that seems to be associated with extreme obesity in African Americans. Perhaps as important, though, the study also modeled an effective approach for partnering with a community—in this case, one whose isolation and previous experiences in scientific studies led it to be suspicious of researchers.
The Reporter spoke with two Project SuGAR researchers. W. Timothy Garvey, M.D., is professor of medicine and chair of the department of nutrition sciences at the University of Alabama at Birmingham. From 1994 to 2003, he was professor and director of the division of endocrinology, diabetes, and medical genetics at the Medical University of South Carolina (MUSC), where he started and directed Project SuGAR. Ida Johnson-Spruill, Ph.D., R.N., L.I.S.W., is an assistant professor at MUSC's college of nursing, and was the nurse manager for Project SuGAR from 1995 to 2004.
Reporter: What inspired you to start Project SuGAR?
Garvey: Our original objective was to do a community-based genetics study for diabetes and obesity genes in the Gullah-speaking African American communities. It was set up with both scientific and social goals, where we could benefit the community as well.
Reporter: How did you engage the Gullah community in the project?
Garvey: After learning that this population appeared to have some characteristics that made them ideal for whole genome scans, the first thing I did was consult with a key community leader. If he had said no, we never could have gone forward. The second step was identifying trusted institutions in the community and engaging them as early partners. Churches, community centers, and a few public health clinics provided us with a venue where we could recruit people and do the actual research. We also appointed a citizen advisory committee that included community leaders as well as academics and patients with diabetes. The next step was to plan the study in consultation and partnership with the community. We had the knowledge of how to do the project scientifically, but they had the knowledge of how to make it work in the community.
Spruill: We took the first year to learn about the community. We met formally and informally with people to build trust and relationships. We told people what we were trying to do, and asked them what they thought. A cornerstone to all of this was that our advisory committee said we needed to provide a service for the community while we were there. So we were able to purchase an RV that was renovated to be a mobile health unit. We took that bus out into the communities, so people began to see it and trust it.
Reporter: How have the project’s findings benefitted the Gullah community?
Garvey: I think our major contribution was improving diabetes care, and also raising awareness of diabetes in general. We were able to provide diabetes screening, education, and referrals. We introduced hemoglobin A1c testing and home glucose monitoring with finger sticks. We also brought in a company that agreed to provide free glucose monitors and test strips.
Reporter: What advice do you have for other medical schools that might want to build partnerships as part of community-based research?
Garvey: For any research like this, in an area like the Gullahs who are highly suspicious of biomedical research, you have to figure out how the project can benefit the community in tangible, immediate ways. To do that, you cannot just assume what is going to benefit the population. You have to ask them what they need and what is going to help them.
[Given typical grant cycles] it's hard to maintain some consistent presence and fulfill obligations with the population. It really takes the institution itself to be committed to some infrastructure for continuous engagement, getting feedback, and including them as equal partners in research year after year. If they're going to be interested in community-based research, institutions are going to have to step up and commit funds.
Spruill: When you are dealing with a community, you have to have patience. You have to put aside six months to 12 months to understand the population, its strengths and gaps in services, and how to work within existing structures. You need to find both formal and informal leaders to work with.
Reporter: Is further research planned?
Garvey: Project SuGAR was a diabetes study, but we wanted to provide entrée into the community for other scientists in a way that would not confuse the population. So we called it the Sea Island Family Study, an umbrella under which there have now been other studies—in oral health and lupus, for example. Researchers are now engaged in a whole genome-wide association scan.
Spruill: Following up on the many years we spent conducting scientific research among the Gullah population, I have carved out an interest in qualitative research to assess the attitudes and perceptions of the Sea Islanders toward genetic research. A future goal is an intervention study to increase genetic literacy among the Sea Islanders.