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Improved health goal of Sea Island research

by Heather Woolwine
Public Relations
The Gullah population of the Sea Islands represents a researcher’s dream.

It's a population of strong and stable multi-generation families with a high prevalence of and risk factors for specific diseases. The population has a  minimal genetic admixture, has remained relatively isolated, and exhibits an almost uniform diet and lifestyle.

But MUSC researchers associated with the projects that serve these communities are interested in more than just the perfect research opportunity; indeed, there is a genuine desire to help this population lead healthier lives and use their experiences to help a nation fraught with health disparities.

And Claude Allen, U.S. Deputy Secretary for the Department of Health and Human Services, saw that last week.

Allen, along with MUSC representatives, DHEC members, and other agencies dedicated to improving health disparities, spent May 6 and 7 exploring MUSC’s Sea Islands Families Project. Through the idea of coordinated research, the project blankets individual research initiatives like Project SuGAR, a project examining the link between diabetes and oral health, sponsored in part by the S.C. Dental COBRE, and the SLEIGH program for lupus. These projects study Type II diabetes, how diabetes relates to periodontal disease, and the prevalence of lupus, especially in black women.

“I’m very interested in the work you are doing because the community and research linkage is so important,” Allen said. “After learning about this project and specifically the Sea Islands community, I am very interested in the approaches and steps this project is taking towards understanding and eliminating health disparities.”

Allen and staff listened to presentations concerning the project on May 6, then toured the Avery Research Center for African-American History and traveled to Rural Mission on John’s Island for dinner. On Friday they visited the Beaufort Jasper Comprehensive Health Care Center and Senior Citizens Center, Penn Center and a Head Start program.

Located on St. Helena Island in Beaufort, Penn Center is the only national historic landmark in the state representing African-American heritage, specifically descendants of slaves from the western and southern coasts of Africa. A cultural and educational institution, its mission is to preserve the history, culture, and environment of the Sea Islands by serving as a resource center and catalyst for the development of programs for Sea Islands residents to maintain self-sufficiency.

Working with Sea Islanders, Not Confusing Them
In 1995, part of the reason Tim Garvey, M.D., and Ida Spruill, R.N., Ph.D. candidate, began the Sea Island Families Project as a coordinated research effort was to avoid a common mishap researchers often confront.

“If you have different researchers trying to convince a community to participate in various kinds of studies without a coordinated, unified effort, then you end up with confusion and a lack of trust,” Garvey said. “With the help of an extraordinary group of community participants in the form of a citizens advisory council, we realized that our challenge was going to be maintaining and strengthening our ties within the community not only for future research, but so the community could really benefit from the research while it was taking place. The community needed to be involved in making decisions about what was and is best for them and the best way for us as researchers to go about it.”

“MUSC has always intended to do the right thing and create a circle of care here on campus,” Spruill said. “And that’s what we wanted in the Gullah community. African-Americans know they’ve been used and lied to in the past. We had to work with them so they would understand that this was a real opportunity to improve their lives. Coordinated research efforts like Project SuGAR, COBRE and SLEIGH benefit the community outright, so the research itself almost becomes incidental.”

Science and Service
Although Garvey and Spruill are no longer on the MUSC campus day in-and-out, both remain active in the Sea Island Families Project. The project continues to function well, and current leadership lies with Jyotika Fernandes, M.D., Sea Island Families Project director, Project SuGAR principal investigator, and the S.C. Dental COBRE component principal investigator; Montrese Edwards, R.N., Project SuGAR coordinator, Steve London, DDS, Ph.D., associate dean for Research and Basic Sciences and overall COBRE principal investigator; Gary Gilkeson, M.D., SLEIGH principal investigator; and Louis Luttrell, M.D., Endocrinology, Diabetes, and Medical Genetics director.

Continuing to function independently, the project now receives funding from numerous sources including the Keck Foundation, COBRE, the National Institutes of Health, the Office of Women’s Health, the Office of Minority Health, and EXPORT. 

Originally written with SuGAR as a component of the study’s clinical core, the COBRE program evolved into one of the major funding sources for SuGAR (as of June 1) and is devoted to understanding the relationship between oral health and diabetic patients in minority populations.

Through this funding, community-based outreach and education for the Sea Island communities takes place with programs like SuGAR, SLEIGH, GENNID, COBRE, and SLE Outreach.

Friday, May 14, 2004
Catalyst Online is published weekly, updated as needed and improved from time to time by the MUSC Office of Public Relations for the faculty, employees and students of the Medical University of South Carolina. Catalyst Online editor, Kim Draughn, can be reached at 792-4107 or by email, catalyst@musc.edu. Editorial copy can be submitted to Catalyst Online and to The Catalyst in print by fax, 792-6723, or by email to petersnd@musc.edu or catalyst@musc.edu. To place an ad in The Catalyst hardcopy, call Community Press at 849-1778.