Understanding the Relationships between Race, Ethnicity, Ancestry and Genomics

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This project examines patients and health professionals understanding of the relationships between race, ethnicity and genetics. The project utilizes three broad approaches to address these issues: (1) development of a scale to assess individuals understanding of race, ethnicity and genetics; and (2) qualitative and quantitative data collection to understand the current beliefs, use and knowledge of the relationships between race, ethnicity, ancestry, identity and genetics; and (3) development of a theoretical framework for science policy and medical education on race, ethnicity, ancestry and genetics. For Aim 1, three empirical sub-projects were conducted which have informed the development of a conceptual framework we are using to guide development of the HGVB (see poster 8). Two of these projects used data from the AAFP web-based survey of 1035 family physicians to analyze physicians views on race and genetics. As part of the survey, we randomized family physicians to see a hypothetical black or white female patient, age 36 who was seeking pre-conception counseling. We found that only 31% of all physicians would offer pre-conception genetic screening. Interestingly, physicians who saw a black patient were more likely to offer screening (35%) than physicians who saw the white patient (26%) (p<0.01). This suggests that in addition to other well-documented occurrences of clinicians use of heuristics or patient profiling in their clinical decision-making, they are likely to do the same with genetic testing. In a manuscript recently accepted for publication in Community Genetics, we report other results from the AAFP survey related to physicians attributions for health disparities. We found that when family physicians were presented with two scenarios for health disparities (one related to gender, and one for race/ethnicity), they were significantly more likely to attribute racial/ethnic differences in health outcomes to the environment than to gender differences (4.6 vs. 3.6 (p<.001). Physicians also rated race/ethnicity and gender as equally important in their clinical decision-making (4.4 and 4.6, respectively). We conclude in this manuscript that while family physicians do not think racial and ethnic health disparities are genetically predetermined, they do have beliefs about how race and ethnicity influences their patients health. In the third sub-project of Aim 1, we conducted 22 interviews with multiracial patients to characterize their beliefs and knowledge about genetic variation and their experiences with race in their clinical encounters. The majority of participants felt that their race was commonly assumed to be black and they noted that this assumption was often transferred to their medical records. These projects are guiding my exploration of the factors within the conceptual framework. For Aim 2, we have completed 10 focus groups. We found that both black and white physicians concluded that the race of the patient is medically relevant in clinical practice. Some physicians reported that it was important in providing insights into a patients culture others stated it informs screening decisions (e.g. prostate-specific antigen). They offered conflicting views on the degree of relevance and the specific role of race in clinical decision-making. They were reticent to make connections among race, genetics, and disease. Taken together, the above results of this program of research suggest that the use of race and genetics in clinical decision-making is not well understood. Based on this body of work, we have developed a preliminary version of the Human Genetic Variation Beliefs Scale (HGVB). With respect to Aim 3, we have conducted 32 cognitive interviews and held two expert advisory panels to provide guidance in scale refinement and web usability of the instrument.