Attitudes and beliefs regardingrace‐targetedgenetic testing of Black people: A systematic review

Abstract

Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race-or ethnicitybased. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.

African American/Black race, apolipoprotein L1, and serum creatinine among persons with HIV

“…Donor-recipient pairs are commonly racially concordant [41,42], and while scrutiny of AAB potential 2354 AIDS 2023, Vol 37 No 15 a donors may largely be driven by implicit bias [43,44], eliminating any potential barriers for AAB potential donors that may result from imprecision in estimation of kidney function is essential. Testing of AAB individuals with high-serum creatinine levels for APOL1 renal risk variants, however, may not be cost-effective given the marginal improvements to accuracy, and perception of race-based genetic testing among AAB populations is still being studied [45,46].…”

Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers

“…Before completing the round 1 survey, panelists were sent informational materials to read, including an infographic about how ApoL1 genetic variants function and journal articles describing ApoL1 genetic testing, as well as a scoping review about attitudes and beliefs regarding race-targeted genetic testing of Black people. 18…”

“…During the orientation webinar, the research team presented preliminary data gathered by the team in an in-progress survey of APOLLO network participants and team members on ApoL1 policies and reviewed the materials sent ahead of the round 1 survey to demonstrate and reiterate the project's purpose and significance. 11,18 The orientation webinar was also designed to foster informed engagement by giving panelists the opportunity to ask questions and providing panelists with information about what they would be expected to do.…”

“…[15][16][17] A review article examining findings from 27 studies reports Black peoples' attitudes toward racially targeted genetic testing. 18 Participants recognize potential benefits, such as supporting informed decision making or motivating healthier life choices. [19][20][21][22][23][24][25] However, participants commonly mention concerns such as genetic testing might increase stigma or discrimination or that testing will occur without appropriate communication and education.…”

Heart Failure in African American Individuals, Version 2.0

“…The absence of clear individual benefit, logistics especially the cost of testing, and potential harm attributable to the findings were identified as strong impediments to testing. 9 Genetic screening faces even greater headwinds of trust. Some estimates indicate African American individuals with a clear indication for genetic screening, eg, familial breast and ovarian cancer, are significantly less likely to receive appropriate counseling and then evaluation.…”