Journal of Genetic Counseling

, Volume 20, Issue 6, pp 572–592 | Cite as

Attitudes and Beliefs of African-Americans Toward Genetics, Genetic Testing, and Sickle Cell Disease Education and Awareness

  • Katie A. Long
  • Stephen B. Thomas
  • Robin E. Grubs
  • Elizabeth A. Gettig
  • Lakshmanan Krishnamurti
Original Research


Research among African-Americans indicates this population perceives sickle cell (SCD) to be a serious disease and sickle cell trait (SCT) screening an important intervention. However, studies have consistently demonstrated a lower than desired uptake of SCD education, inadequate knowledge regarding personal and family trait status, and a low perceived susceptibility of giving birth to a child with the disease. We examined general attitudes and beliefs regarding genetics and genetic testing including prenatal testing and newborn screening; we used this information as the foundation to more specifically assess attitudes and beliefs regarding SCD and perceived barriers to SCD education and awareness. Thirty-five African-American adult men and women participated in one of four focus groups. Thematic analysis identified that both prenatal testing and newborn screening are acceptable forms of genetic testing. Based largely on their personal experiences, participants possessed an understanding of the natural progression of SCD but had a limited understanding of the inheritance and probable risk of giving birth to a child with the disease. Barriers to education and greater awareness of SCD were classified as personal, familial, and societal. Community based interventions focused on sharing the stories of individuals with first-hand experiences with SCD should be considered.


Sickle cell disease African-American Health belief Qualitative research Thematic analysis Genetic testing Genetic counseling 


  1. Acharya, K., Lang, C. W., & Ross, L. F. (2009). A pilot study to explore knowledge, attitudes, and beliefs about sickle cell trait and disease. Journal of the National Medical Association, 101, 1163–1172.PubMedGoogle Scholar
  2. Beeson, D. (1997). Nuance, complexity, and context: qualitative methods in genetic counseling research. Journal of Genetic Counseling, 6, 21–43.PubMedCrossRefGoogle Scholar
  3. BeLue, R., Taylor-Richardson, K. D., Lin, J., Rivera, A. T., & Grandison, D. (2006). African Americans and participation in clinical trials: differences in beliefs and attitudes by gender. Contemporary Clinical Trials, 27, 498–505.PubMedCrossRefGoogle Scholar
  4. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRefGoogle Scholar
  5. Catz, D. S., Green, N. S., Tobin, J. N., Lloyd-Puryear, M. A., Kyler, P., Umemoto, A., et al. (2005). Attitudes about genetics in underserved, culturally diverse populations. Community Genetics, 8, 161–172.PubMedCrossRefGoogle Scholar
  6. Gullate, M. (2006). The influence of spirituality and religiosity on breast cancer screening delay in African American women: application of the Theory of Reasoned Action and Planned Behavior (TRA/TPB). Journal of the Association of Black Nursing Faculty in Higher Education, 17, 89–94.Google Scholar
  7. Gustafson, S. L., Gettig, E. A., Watt-Morse, M., & Krishnamurti, L. (2007). Health beliefs among African American women regarding genetic testing and counseling for sickle cell disease. Genetics in Medicine, 9, 303–310.PubMedCrossRefGoogle Scholar
  8. Hamilton, L. A., Aliyu, M. H., Lyons, P. D., May, R., Swanson, C. L., Savage, R., et al. (2006). African-American community attitudes and perceptions toward schizophrenia and medical research: an exploratory study. Journal of the National Medical Association, 98, 18–27.PubMedGoogle Scholar
  9. Hoyo, C., Reid, M. L., Godley, P. A., Parrish, T., Smith, L., & Gammon, M. (2003). Barriers and strategies for sustained participation of African-American men in cohort studies. Ethnicity & Disease, 13, 470–476.Google Scholar
  10. Janz, N. K., & Becker, M. H. (1984). The health belief model: a decade later. Health Education Quarterly, 11, 1–47.PubMedCrossRefGoogle Scholar
  11. Kass, N. E., Medley, A. M., Natowicz, M. R., Hull, S. C., Faden, R. R., Plantinga, L., et al. (2007). Access to health insurance: experiences and attitudes of those with genetic versus non-genetic medical conditions. American Journal of Medical Genetics. Part A, 143, 707–717.PubMedCrossRefGoogle Scholar
  12. Kessler, L., Collier, A., Brewster, K., Smith, C., Weathers, B., Wileyto, E. P., et al. (2005). Attitudes about genetic testing and genetic testing intentions in African American women at increased risk for hereditary breast cancer. Genetics in Medicine, 7, 230–238.PubMedCrossRefGoogle Scholar
  13. King, D. F., Trouth, A. J., & Adams, A. O. (2001). Factors preventing African-Americans from seeking early intervention in the treatment of ischemic strokes. Journal of the National Medical Association, 93, 43–46.PubMedGoogle Scholar
  14. Kladny, B., Gettig, E. A., & Krishnamurti, L. (2005). Systematic follow-up and case management of the abnormal newborn screen can improve acceptance of genetic counseling for sickle cell or other hemoglobinopathy trait. Genetics in Medicine, 7, 139–142.PubMedCrossRefGoogle Scholar
  15. Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research (3rd ed.). Thousand Oaks: Sage.Google Scholar
  16. Laskey, S. L., Williams, J., Pierre-Louis, J., O’Riordan, M., Matthews, A., & Robin, N. H. (2003). Attitudes of African American premedical students toward genetic testing and screening. Genetics in Medicine, 5, 49–54.PubMedCrossRefGoogle Scholar
  17. Markel, H. (2006). Scientific advances and social risks: Historical perspectives of genetic screening programs for sickle cell disease, Tay-Sachs disease, neural tube. National Human Genome Research Institute. Retrieved from
  18. Midence, K., Graham, V., Acheampong, C., & Okuyiga, E. (1994). Increasing awareness for higher quality care. Measuring knowledge of sickle cell disease in adult patients. Professional Nurse, 9, 255–258.Google Scholar
  19. National Newborn Screening and Genetics Resource Center, National Newborn Screening Report, Sickle Carrier Program Follow-up (2009). Available at: Accessed January 8, 2011.
  20. Nicholson, W. K., Grason, H. A., & Powe, N. R. (2003). The relationship of race to women’s use of health information resources. American Journal of Obstetrics and Gynecology, 188, 580–585.PubMedCrossRefGoogle Scholar
  21. Olney, R. (2000). Newborn screening for sickle cell disease: Public health impact and evaluation. Genetics and public health in the 21st century. Oxford University. Retrieved from
  22. Pass, K. A., Lane, P. A., Fernhoff, P. M., Hinton, C. F., Panny, S. R., Parks, J. S., et al. (2000). US newborn screening system guidelines II: follow-up of children, diagnosis, management, and evaluation. Statement of the Council for Regional Networks for Genetic Services (CORN). Journal of Pediatrics, 137, S1–S46.PubMedCrossRefGoogle Scholar
  23. Richardson, J. T., Webster, J. D., & Fields, N. J. (2004). Uncovering myths and transforming realities among low-SES African-American men: implications for reducing prostate cancer disparities. Journal of the National Medical Association, 96, 1295–1301.PubMedGoogle Scholar
  24. Richer, J., & Chudley, A. E. (2005). The hemoglobinopathies and malaria. Clinical Genetics, 68, 332–336.PubMedCrossRefGoogle Scholar
  25. Robins, A. G. (2005). Surveillance of selected chronic diseases: Benchmarks for the healthy Black Family Project. Allegheny Health Department and Center for Minority Health.Google Scholar
  26. Rucker-Whitaker, C., Flynn, K. J., Kravitz, G., Eaton, C., Calvin, J. E., & Powell, L. H. (2006). Understanding African-American participation in a behavioral intervention: results from focus groups. Contemporary Clinical Trials, 27, 274–286.PubMedCrossRefGoogle Scholar
  27. Sandelowski, M. (2000). Focus on research methods: whatever happened to qualitative description? Research in Nursing and Health, 23, 334–340.PubMedCrossRefGoogle Scholar
  28. Talosig-Garcia, M., & Davis, S. W. (2005). Information-seeking behavior of minority breast cancer patients: an exploratory study. Journal of Health Communication, 10, 53–64.PubMedCrossRefGoogle Scholar
  29. The New York State Task Force on Life and the Law. (2000). Genetic testing and screening in the age of genomic medicine. New York: Author.Google Scholar
  30. Thomas, S., & Quinn, S. (2008). Poverty and the elimination of urban health disparities: challenge and opportunity. Annals of the New York Academy of Sciences, 1136, 111–125.PubMedCrossRefGoogle Scholar
  31. Treadwell, M. J., McClough, L., & Vichinsky, E. (2006). Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and sickle cell trait. Journal of the National Medical Association, 98, 704–710.PubMedGoogle Scholar
  32. US Census Bureau (2005). Poverty thresholds. Available at: Accessed January 30, 2011.
  33. Vogel, K. J., Murthy, V. S., Dudley, B., Grubs, R. E., Gettig, E., Ford, A., et al. (2007). The use of family health histories to address health disparities in an African American community. Health Promotion Practice, 8, 350–357.PubMedCrossRefGoogle Scholar
  34. Wethers, D. L. (2000a). Sickle cell disease in childhood: part I. Laboratory diagnosis, pathophysiology, and health maintenance. American Family Physician, 62, 1013–1020.PubMedGoogle Scholar
  35. Wethers, D. L. (2000b). Sickle cell disease in childhood: Part II. Diagnosis and treatment of major complications and recent advances in treatment. American Family Physician, 62, 1309–1314.PubMedGoogle Scholar
  36. Wilson, R. E., Krishnamurti, L., & Kamat, D. (2003). Management of sickle cell disease in primary care. Clinical Pediatrics, 42, 753–761.PubMedCrossRefGoogle Scholar
  37. Wright, S. W., Zeldin, M. H., Wrenn, K., & Miller, O. (1994). Screening for sickle-cell trait in the emergency department. Journal of General Internal Medicine, 9, 421–424.PubMedCrossRefGoogle Scholar
  38. Zimmerman, R. K., Tabbarah, M., Nowalk, M. P., Raymund, M., Jewell, I. K., Wilson, S. A., et al. (2006). Racial differences in beliefs about genetic screening among patients at inner-city neighborhood health centers. Journal of the National Medical Association, 98, 370–377.PubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  • Katie A. Long
    • 1
    • 4
  • Stephen B. Thomas
    • 2
  • Robin E. Grubs
    • 1
  • Elizabeth A. Gettig
    • 1
  • Lakshmanan Krishnamurti
    • 3
  1. 1.Department of Human GeneticsUniversity of PittsburghPittsburghUSA
  2. 2.Department of Health Services AdministrationUniversity of MarylandCollege ParkUSA
  3. 3.Division of Hematology, Oncology, and Bone Marrow TransplantChildren’s Hospital of PittsburghPittsburghUSA
  4. 4.Children’s Hospital of PittsburghPittsburghUSA

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