Enhancing recruitment of African-American families into genetic research: Lessons learned from Project SuGar

Journal of Community Genetics

Volumn 1, Issue 3, 2010, Pages 125-132

  Spruill, Ida J ^a  

^a MEDICAL UNIVERSITY OF SOUTH CAROLINA   (United States)

Author keywords

African Americans; Families; Genetics; Gullah; Recruitment; Rural

Indexed keywords

AFRICAN AMERICAN; ARTICLE; COMMUNITY CARE; CULTURAL FACTOR; DISEASE REGISTRY; FEMALE; GENETIC SCREENING; GENETIC SERVICE; HEALTH CENTER; HUMAN; INHERITANCE; MALE; MASS SCREENING; MEDICAL GENETICS; MEDICAL RESEARCH; NON INSULIN DEPENDENT DIABETES MELLITUS; PARTICIPATORY RESEARCH; PATIENCE; PRIORITY JOURNAL; RURAL POPULATION; VULNERABLE POPULATION;

EID: 79952364626     PISSN: 1868310X     EISSN: 18686001     Source Type: Journal    
DOI: 10.1007/s12687-010-0017-x     Document Type: Article

References (25)

1. Bowen DJ, Penchaszadeh VB (2008) Special issue: Enhancing minority recruitment into genetics research. Community Genet 11:189-190 (Pubitemid 351555885)
2. Swanson GM, Ward AJ (1995) Recruiting minorities into clinical trials: Toward a participant-friendly system. J Natl Cancer Inst 87:1747-1759
3. Branson RD, Davis K Jr, Butler KL (2007) African Americans' participation in clinical research: Importance, barriers, and solutions. Am J Surg 193:32-39 (discussion 40) (Pubitemid 44937148)
4. Royal C, Baffoe-Bonnie A, Kittles R, Powell I, Bennett J, Hoke G et al (2000) Recruitment experience in the first phase of the African American Hereditary Prostate Cancer (AAHPC) Study. Ann Epidemiol 10:S68-S77
5. Holtorf C (1996) Understanding monumental time and cultural memory. J Eur Archaeol 4:119-152
6. Assmann J (1988) Kollektives Gedächtnis und kulturelle Identität. In: Assmann J, Hölscher T (eds) Kultur und Gedächtnis. Suhrkamp, Germany, pp 9-19
7. Moynihan D (1967) The Negro family: The case for national action. The Moynihan report and the politics of controversy. Available from www.encyclopedia.com/doc/1O88-MoynihanReport.html, cited 30 December 2008
8. Herrnstein R, Murray C (1994) The bell curve: Intelligence and class structure in American life. Free Press, Glencoe
9. Byrd G, Vance M, Edwards C, Taylor V, Kelkar V, Byrd P et al (2009) Ascertaining older African-Americans for genetic studies in Alzheimer disease. Alzheimer and Dementia 5:234-238
10. Patterson AR, Davis H, Shelby K, McCoy J, Robinson LD, Rao SK et al (2008) Successful strategies for increasing African American participation in cancer genetic studies: Hopeful signs for equalizing the benefits of genetic medicine. Community Genet 11:208-214 (Pubitemid 351555889)
11. Sale MM, Lu L, Spruill IJ, Fernandes JK, Lok KH, Divers J et al (2009) Genome-wide linkage scan in Gullah-speaking African American families with type 2 diabetes: The Sea Islands Genetic African American Registry (Project SuGar). Diabetes 58:260-267
12. Spruill I (2004) Project SuGar: A recruitment model for successful African-American participation in health research. J Natl Black Nurses Assoc 15:48-53
13. Levkoff S, Sanchez H (2003) Lessons learned about minority recruitment and retention from the Centers on Minority Aging and Health Promotion. Gerontologist 43:18-26 (Pubitemid 36222690)
14. Corbie-Smith G, Blumenthal C, Henderson G, Garrett J, Bussey- Jones J, Moloney M et al (2008) Studying genetic research participants: Lessons from the "Learning About Research in North Carolina" Study. Cancer Epidemiol Biomark Prev 17:2019-2024
15. Pollitzer W (1988) The Gullah people and their African heritage. University of Georgia Press, Athens
16. Garvey T, McLean D, Spruill I (2003) The search for obesity genes in isolated population: Gullah-speaking African Americans and the role of uncoupling protein 3 as a thrifty gene. Progress in Obesity Research 9:373-379
17. Farlex Inc. (2010) Fictive kin
18. Brown D (2004) Recruitment of Black Americans for research: A model of success. The Journal ofMulticultural Nursing& Health 10:19-23
19. Taylor W (2009) Recruitment of three generation of African-American Women into genetic research. J Transcult Nurs 20:219-226
20. Shavers-Hornaday VL, Lynch CF, Burmeister LF, Torner JC (1997) Why are African Americans under-represented in medical research studies? Impediments to participation. Ethn Health 2:31-45 (Pubitemid 27292301)
21. Diaz VA, Mainous AG 3rd, McCall AA, Geesey ME (2008) Factors affecting research participation in African American college students. Fam Med 40:46-51
22. Bonvicini KA (1998) The art of recruitment: The foundation of family and linkage studies of psychiatric illness. Fam Process 37:153-165 (Pubitemid 128458665)
23. Ottman R, Berenson K, Barker-Cummings C (2005) Recruitment of families for genetic studies of epilepsy. Epilepsia 46:290-297 (Pubitemid 40194673)
24. Hatchet B, Holmes K, Duran D, Davis A (2000) African-Americans and research participation: The recruitment process. J Black Stud 30:664-669
25. Ford ME, Havstad SL, Tilley BC (2003) Recruiting older African American men to a cancer screening trial: (the AAMEN project). Gerontologist 43:27-35 (Pubitemid 36222691)