Recent advances in genomic medicine and genetic testing have increased availability of and access to genetic assessments in both specialty and routine clinical care. Isolation of genetic markers for disease risk among healthy individuals is changing the way in which diseases are detected and defined. Media reports of genetic findings and availability of direct-to-consumer tests may increase both public curiosity and concern. However, interest in use of genetics in routine clinical care has not been well characterized in healthy individuals, particularly among racial/ethnic minority populations. Additionally, broader application of genetics in routine care is limited by under-representation of racial/ethnic minorities in genetic research. Recognizing these issues, the National Human Genome Research Institute's 2011 vision for the future of genomic medicine and research prioritizes the need to better integrate genetics into everyday clinical practice and assure representation of diverse populations in genetic research. Building on this vision, our short-term goal is to better understand the impact of factors such as medical mistrust, genetic literacy, confusion about meaning of genetic results, and concern about negative repercussions from genetic testing on the integration of genetics within the context of routine clinical care and on participation in genetic research. These issues have not by thoroughly studied within the context of community samples of racial/ethnic minority populations. Thus, our Specific Aim is to assess urban African American adults'receptivity to using genetics as part of their routine healthcare and to their participation in genetic research. First, cognitive interviews (n=20) will be used to develop and refine survey items about genomic medicine and genetic research. We will then conduct surveys with African American adults (n= 300;50% male, 50% female) using a community-based recruitment approach. Male-female differences in responses will be explored, as will associations between willingness to use genetics in routine care vs. willingness to participate in genetic research. This research will lend insight into how African American adults view genomic medicine and participation in genetic research. Findings will inform future studies with the long-term goals of exploring racial differences in receptivity to genomic medicine and research, developing interventions to increase patient-provider communication about genetic risks for disease, and developing recruitment materials to more effectively increase racial/ethnic minorities participation in genetic research.
The increased availability of genetic risk assessment tools for public and clinical use, along with a growing emphasis on genetic research, is changing the face of clinical medicine. This study examines how African American adult men and women understand, prioritize, and perceive barriers and benefits to genomic medicine in both clinical and research settings. Results will inform future translational studies aimed at the more effective use of genomic medicine in racial/ethnic minority communities and at increasing racial/ethnic minority recruitment to genetic research studies.
