Purpose: The purpose of this study was to conduct a cross-cultural comparative investigation describing and examining selected factors group-based medical mistrust (GBMM) that would potentially influence urban African Americans versus Black African immigrants’ knowledge, concerns and perceived disadvantages of availing themselves to genetic testing and/or participating in genetic research.
Methods: Using a cross-sectional survey design, a non-probability sample (N = 424) Blacks (n = 212) Urban African Americans) and (n = 212) Black African Immigrants were administered an in-person structured questionnaire. The questionnaire consisted of five instruments—(a) Socio-demographic Characteristics, (b) Knowledge of Medical Genetic Scale, (c) Group-based Medical Mistrust Scale, (d) Anticipated Consequences and Concerns about Abuses of Genetic Testing Information Scale, and (e) Perceived Disadvantages of Genetic Testing Scale. Descriptive, bivariate and multivariate analyses were conducted. Descriptive statistics of frequencies, percentages, means, and standard deviations were used to describe the socio-demographic characteristics of the sample and for reporting items answered on various scales. Pearson product-moment correlations were computed to determine the bivariate associations between the independent variables: concerns about abuse of genetic information, GBMM, and knowledge of medical genetics with the perceived disadvantages of genetic testing. Finally, a multivariate hierarchical linear regression analysis was performed to identify those variables that had contributed to the perceived disadvantages of testing.
Results: Knowledge level of genetic science varied between groups with African Americans scoring significantly higher than Black African immigrants (t=5.97, p<.0005). On the Group-based Medical Mistrust, Black African immigrants were significantly more trusting of their healthcare providers than African Americans (t=3.33, p=.001). On future expectation and anticipated consequences of medical genetic research, majority of the participants believed that genetic information will be widely used and integrated into the healthcare system. However, 42% of African American participants believed that it is very unlikely that governments will be able to protect their citizens against misuse of genetic tests and information as compared to 26% of African immigrant participants (Χ2=11.69, p<.01). Both groups expressed trepidations about the wide used of genetic testing in healthcare. African immigrants were more concerned about increasing use of genetic testing in healthcare. One-third of African immigrant’s participants and 41% of the African Americans anticipated that the wide use of genetic testing would lead to a negative impact on society creating a dichotomy in our society—people with ’good' gene versus people with a 'bad' genetic predisposition (Χ2=6.31, p<.05). In multivariate analyses, knowledge, group-based medical mistrust, anticipated consequences, and ethnicity significantly explained 34.6% of the variance of perceived disadvantages of genetic testing. Higher group-based medical mistrust, anticipated consequences of genetic testing and African immigrant status contributed to greater perceived disadvantages of genetic testing.
Conclusions: African Americans and Black African immigrants may consider several individual and group-based social and ethical concerns when they are given the option for genetic testing. Understanding these factors and addressing them as part of the counseling process for a genetic test is important for healthcare providers working with members of these groups. Both groups suggested several individual and communal socio-ethical concerns about genetic testing. Understanding these factors and addressing them as part of the recruitment and genetic counseling process is important to increasing participation.
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