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The Gullah Connection

Community-based research aids Sea Islands population

By Dawn Brazell
Public Relations

When there’s a genetic goldmine in a community as special as the Sea Islanders, there’s a heavy responsibility to value and protect it.

That’s what drew Ida Johnson-Spruill, Ph.D., R.N., back to MUSC when she finished her graduate work. She felt compelled to return home because she missed working with the Gullah community. Going away gave her perspective on the rare and special opportunity of doing genetic research with this distinct population that was isolated from the mainland for many years, she said.

In conjunction with the Citizen Advisory Community (CAC), she is planning a tribute to be held this summer to commemorate the accomplishment of work that began in 1995 with Project SuGAR (Sea Island Genetic African American Family Registry), which is a MUSC community-based research study conducted from 1995 to 2004 focusing on Gullah families affected by Type 2 diabetes.

The goal was to establish a world-class family registry and DNA bank of Sea Island families to identify genetic defects or mutations responsible for expression of complex diseases. Another goal that has worked out beautifully was to develop long-term collaborations with people and institutions on the Sea Islands to promote preventative health, she said.
The image is “Cousins” by Jonathan Green from the 2008 MOJA Arts Festival. Project SuGAR used cultural events in its community-based research to strengthen community ties.

That goal has grown beyond what anyone expected.

Frederica Hughes, R.N., a research nurse who is part of the community and who also worked with the project for several years, said the project just seemed to grow a life of its own. “It became bigger than any of the people who started it,” she said.

It served as a catalyst and became an important component of the Sea Islands Families Project (SIFP), which represents a broader effort to identify genes that cause complex or polygenic diseases in African-Americans. SIFP includes such groups as the Center of Biomedical Research Excellence (COBRE) for Oral Health at MUSC and the Systemic Lupus Erythematosus in Gullah Health (SLEIGH) Study.

One goal of Project SuGAR was to enroll 400 African-American families with Type 2 diabetes, but the group ended up enrolling 652 families. Prior to Project SuGAR, there was little information or research regarding candidate genes contributing to the expression of Type 2 diabetes in African-Americans. That changed when study findings located the genome region contributing to diabetes among the Gullah population to be on the long arm of chromosome 14.

Spruill said this is an ideal research population for genetics because African-Americans living on the Sea Islands of South Carolina are characterized by a low degree of non-African genetic admixture and high rates of Type 2 diabetes and diabetic complications. The genomewide linkage scans were the first to be conducted in this population. It revealed regions contributing to diabetes among the Sea Islanders that are different from discoveries in other populations.

Spruill said these findings are exciting in that they may have implications for medical interventions and personalized medicine.

The same is true of the studies in systemic lupus that are a part of the SLEIGH Study done by Diane Kamen, M.D., and Gary Gilkeson, M.D. They found that the familial prevalence of lupus on the Sea Islands is significantly higher than in other communities where lupus has been studied. This means that it is more likely that there is more than one person with lupus in a family in the Sea Islands as compared to other parts of the country, a finding that suggests genetics plays a bigger role in who gets lupus locally. One of the study’s goals is to determine the genes that cause lupus. The investigators were also recently funded by the National Institutes of Health to explore environmental triggers of autoimmunity, in partnership with the Sea Island Gullah community.

Other areas of research interest include studying obesity and breast cancer in this population, by Hollings Cancer Center Prevention and Control. One advantage of the CAC/Sea Island Families Project is that the group can be a gatekeeper for Sea Islanders as research among this population grows in popularity. Researchers are finding that at the molecular level some people tend to respond to disease and medications differently and that genetic variations or make up can make significant differences. It sets the stage for epigenetic and pharmacogenetics or the study of how genes influence an individual’s response to drugs and interaction with the environment.

It’s not a coincidence that research has flourished in this area, Spruill said. Time was spent developing relationships, with many health care providers, attending annual cultural events and conducting health screenings.

“If you embrace the community, provide a service, show respect and include the community in your planning, delivery and dissemination, they will embrace you and your work. Project SuGAR was embraced by the Sea Islands and this made the project successful.”

Dr. Ida Spruill found Project SuGAR has opened up research while protecting a vulnerable population. For information on Project SuGAR, visit

The experience has changed her, she said. “We learn tolerance. We learn respect for others, and the Gullah culture. Just because people look or speak a certain way, you cannot or should not ascribe a behavior to them. You learn to treat people as individuals.

Hughes said it also has had a profound effect on her.

“It was awesome. Ida had us embrace our Gullah culture. I am from Johns Island and always thought we were special,” she said, recalling how she tended to downplay her cultural ties when she was younger and attended a school with mostly white people. “After Project SuGAR, I knew I could embrace it.”

As a nurse educator and recruiter, she said she enjoyed the community outreach involved with her work that included using the findings of the genetic research to encourage preventative health. She found a significant deficit in what they needed to know about nutrition and wellness. The focus was not only treating an illness already there, but also about educating the next generation, she said.

“MUSC is about excellence, and part of excellence is giving them knowledge. Giving them knowledge is power.” Hughes, who also participated in the study along with her mother, said all her background reading on diabetes and obesity made her decide to make personal changes as well, especially given her genetic predisposition for diabetes and obesity. She’s changed her diet, lost 50 pounds and exercises regularly. Though the recruitment part of Project SuGAR has ended, she’s still out in the community attending cultural events and health fairs to encourage healthy lifestyles, she said.

Spruill is, too, especially given how much exciting research is in the works.

“It’s important for African-Americans to participate in research, especially genetic research because our ancestral origins may affect genetic variation or cause us to respond differently to some medications and treatment. Participation in research will help us develop new targeted drugs and better treatment that may work for us because we participated in the studies and clinical trials. That’s the beauty of genetic research and Project SuGAR.”

Spruill will be researching how attitudes and cultural beliefs in Sea Islanders affect decision-making and if knowledge of a genetic susceptibility will influence health behaviors.

Project SuGAR broke new ground in that it was the first Lowcountry study on genetics with a population that historically did not participate in research. “We’re indebted to the Sea Islands and so grateful for the people who have been willing to participate,” she said. “It is time to say ‘thank you’ to the Sea Islanders. It is time to share our findings with the community.”

She anticipates a celebration date to be set by CAC/ SIFP in early August.

“MUSC should celebrate genetic research in the Lowcountry and be proud of the accomplishments. It’s time for a celebration. It’s been a MUSC family affair, and it’s far from being over. There are so many other studies that are coming out of this. I’m not finished yet,” she said, a broad grin breaking out.

“I’m so far from done.”

Friday, Feb. 18, 2011

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