Health beliefs among African American women regarding genetic testing and counseling for sickle cell disease

The Health Belief Model can help in understanding low acceptance of disease prevention and screening. We studied health beliefs of African American women to determine causes of low acceptance of genetic testing and counseling despite high prevalence of sickle cell disease and heterozygotes in this population. An anonymous questionnaire using a 12-question measure with a 5-point Likert scale response was administered to 101 African American women attending an obstetrics and gynecology clinic to determine knowledge of sickle cell disease, perception of risk, severity, likelihood of benefit and barriers to counseling. The cumulative mean perceived scores on the 5-point Likert scale were 4.22 +/- 0.88 for severity of sickle cell disease, 4.10 +/- 1.03 for benefit of genetic testing, 2.28 +/- 1.00 for barriers to testing, and 2.62 +/- 1.06 for risk of having a child with sickle cell disease. High average level knowledge was associated with high perception of severity and benefit to screening (P < 0.05). African American women have a relatively high belief of the severity of sickle cell disease and benefits of genetic counseling but frequently do not appear to believe that they are at risk of having a child with the disease. This should be taken into account in the design of educational and counseling strategies.