Attitudes about Genetics in Underserved, Culturally Diverse Populations

Abstract

Objective: New medical discoveries regarding genetic susceptibility to common chronic diseases, and the decoding of the human genome have increased public attention to genetics. What information is understood and what attitudes exist towards genetics and genetic research have not been well examined in underserved, culturally diverse communities. Methods: To better understand attitudes and beliefs towards genetics and genetic testing in these groups, we conducted eight focus groups with 55 patients and health care workers in New York City and Westchester, N.Y., in English, Spanish, and Chinese. Results: Focus group participants had limited understanding about genetics or genetic testing. Newborn screening was the least-known genetic issue, even among health care workers. Regardless of their cultural group, most participants expressed a desire for more information about genetics and genetic tests. Latinos and Chinese participants generally expressed positive attitudes towards genetic studies and genetic testing, with the possibility of preventing diseases cited as the main advantage. Black Americans and Non-Hispanic Whites reported mixed feelings about genetic research and genetic testing. Concerns expressed included: anxiety before receiving test results or waiting for a disease to develop, fear of genetic discrimination by health and life insurance companies and employers, not having the financial means to deal with genetic diseases in themselves or a sick child, concern that children and adults are having too many tests. Black Americans expressed the most concern for possibly harmful use of genetic information. Conclusions: Minority populations of diverse cultures have limited knowledge about genetics and genetic testing, would like to have more information, and are not well reached by the current educational approaches. Participants knew the least about newborn screening, a test that is mandatory in the New York State. While genetic knowledge by minority populations was perhaps not different from the level of knowledge of consumers in general, minority populations are at particular risk of being left behind because of historically poor access to information and services.

Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease

“…In a recent study among the general public in the Netherlands, 57% perceived a lack of genetic knowledge [13], which is corroborated by other recent studies in the Netherlands [28,29] and abroad [30,31]. This finding was unanticipated as we expected chronic patients to be relative experts owing to their long-standing experience with health care.…”

Evaluation findings from genetics and family health history community-based workshops for African Americans

“…Data collection procedure The community education workshops targeted African American adults residing in wards in Washington, DC with the following demographic characteristics: (a) 60% African American/Black (US Census Bureau, Office of Planning 2000), and (b) high deaths rates from heart disease, cancer, hypertension, and diabetes (Cano et al 2008). Eight community education workshops were held in the wards targeted for the study from February 2010 to May 2010 and 183 participants consented to participate in the study.…”

“…Mistrust has been a significant predictor of the perceived disadvantages, negative attitudes toward screening and genetic testing, and abuse concerns (Thompson et al 2003). A study by Catz et al (2005) revealed that African Americans were more likely to believe that genetic testing would lead to racial discrimination such that the government would use genetic tests to label groups as inferior. Additional concerns in the African American community exist regarding insurability and ethical dilemmas posed by genetic technology (Catz et al 2005).…”

“…A study by Catz et al (2005) revealed that African Americans were more likely to believe that genetic testing would lead to racial discrimination such that the government would use genetic tests to label groups as inferior. Additional concerns in the African American community exist regarding insurability and ethical dilemmas posed by genetic technology (Catz et al 2005). Equally important, African Americans may hold a number of beliefs including religious beliefs that conflict with their observed preference for genetic testing (Singer et al 2004).…”

“…African Americans have limited knowledge about genetics and the availability of genetic services although they would like to have more information (Catz et al 2005). Despite numerous concerns, members of the African American community believe that genetic testing to check for risk of getting a disease is a good idea and that research on genetics will bring cures for many diseases (Zimmerman et al 2006).…”