Attitudes Toward Genomic Testing and Prostate Cancer Research Among Black Men

Abstract

Introduction Black men are diagnosed with prostate cancer (PCa) at nearly twice the rate of white men and are underrepresented in PCa research, including validation studies of new clinical tools (e.g., genomic testing). Since healthcare system mistrust has contributed to these disparities for centuries, black men may be less inclined to pursue novel testing and facilitators of their PCa research study participation remains warranted. Methods A community-engaged approach involving a partnership with a community organization was utilized to conduct 7 focus groups in Minnesota, Alabama, and California to explore black men’s attitudes toward PCa research participation and genomic testing for PCa. Data were collected and analyzed from April 2015-April 2017. Results Identified genomic testing barriers included a lack of terminology understanding, healthcare system mistrust, reluctance to seek medical care, and unfavorable attitudes toward research. Facilitators included family history, value of prevention, and the desire for health education. Lack of PCa knowledge, PSA testing confusion, health care system distrust, and misuse of personal health information were barriers to research study participation. Some black men were motivated to participate in research if seen as constructive and transparent. Conclusions Disparities for black men can both motivate and disincentivize participation depending upon a positive or negative view of research. Confusion over PCa clinical care has fueled some mistrust among black men affecting both clinical care and research participation. With increased education, health literacy, and assurances of research integrity and transparency, black men may be more willing to participate in PCa testing and research.

Patient and Health Care Provider Needs and Preferences in Understanding Pharmacogenomic and Genomic Testing: A Meta-Data Analysis

“…” (a patient as cited in Lee et al, 2017, p. 182). Individuals from the public reported having heard of genetic testing or heard about using genetic tests to determine personal disease risk or inherited disease risk in children, but being less familiar with genomic testing or using those tests to determine treatments or drug efficacy (Rogers et al, 2018).…”

“…Among the general public, despite a certain degree of conversational familiarity with the terms "genetic" and "genes", several individuals use these terms inaccurately and find it difficult to explain what "genetic" means (Lanie et al, 2004). The terms "genomic" and "genetic" are also used interchangeably (Rogers et al, 2018). Although there is an overall limited understanding of basic genetic concepts among the public (Lanie et al, 2004), genetics are understood as related to traits that are inherited and passed down the generations within a family: "…when we say genetic test, are we talking about something related to, uh, heredity ?…”

“…Patients reported other benefits, such as getting the right dose of the drug faster, preventing adverse drug reaction, and reducing unnecessary medications (Lee et al, 2018). With regard to genomic testing, some patients also reported that early detection could save lives and, thus, supported testing for both themselves and their families (Rogers et al, 2018). Similarly, patients with Parkinson's disease reported that if they were found to be carriers of a PD mutation, this information could guide their therapeutic plan and they would share the information with their relatives (Maloney et al, 2018).…”

Perspective: A Call for Precision in Faith-based Initiatives Promoting Health among African Americans

“…These data will need to be integrated with multiple clinical and social science disciplines to reach its potential to improve population health, 13,14 and to better connect with the AA community. [15][16][17] Within-group heterogeneity (where the greatest differences exist) is a significant empirical finding from precision medicine research that has conceptual implications for faithbased studies targeting AAs. An overwhelming majority of AAs are Protestants (79%) and a substantial segment (35%) of this population attends a Baptist church.…”

African American mothers’ attitudes towards genetic testing in the InterGEN study

“…Several research groups have formally investigated reasons why minority populations are underrepresented in genetic studies (Furr 2002;Wendler et al 2006;BeLue et al 2006;Suther and Kiros 2009;Bates et al 2011;Sussner et al 2011;Taylor et al 2013). Negative attitudes towards genetic testing, specifically among African Americans, have been associated with fear of racialization of genetic test results, general mistrust of physicians and the medical system, and lower levels of education (Furr 2002;Suther and Kiros 2009;Taylor et al 2013;Rogers et al 2018). However, others have found favorable attitudes towards genetic testing among African Americans and willingness to participate in genetic research studies (Wendler et al 2006;Bates et al 2011;Taylor et al 2013).…”