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

Abstract

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.

Knowledge, Beliefs and Attitude towards Sickle Cell Disease among University Students

“…Most participants had inadequate knowledge particularly on the pattern of inheritance of SCD or trait. This is consistent with previous published US data that demonstrated low knowledge of SCD [14][15][16]. In a study among adults who themselves were sickle cell carriers or who had a child with SCT, Acharya et al [8] reported significant misunderstanding about how SCD is inherited.…”

University Students' Attitudes towards Genetic Testing: A Comparative Study

“…Beyond the fact that the discussion of topics such as newborn screening and prenatal testing is more appropriate for individuals of childbearing age [25], statistics show that in Israel most couples marry during their academic studies [26], and will hopefully have genetic counseling during those years. The undergraduate students' age is therefore the most relevant factor in our analysis of their genetic literacy.…”

Exploring the cancer risk perception and interest in genetic services among Indigenous people in Queensland, Australia

“…First, the at-risk individuals in the family, if aware of the risk, could benefit from prevention strategies. 4,32 Second, if accurate risk perception of cancer were adopted it could be used as a motivator for adhering to screening programs and healthy behaviour modifications. 4 Finally, participants indicated that they were interested in accessing genetic services, but for reasons unknown to the study team appeared not to have accessed these services.…”