A Review of African Americans’ Beliefs and Attitudes About Genomic Studies: Opportunities for Message Design

Abstract

Precision Medicine, the practice of targeting prevention and therapies according to an individual’s lifestyle, environment or genetics, holds promise to improve population health outcomes. Within precision medicine, pharmacogenomics (PGX) uses an individual’s genome to determine drug response and dosing to tailor therapy. Most PGX studies have been conducted in European populations, but African Americans have greater genetic variation when compared with most populations. Failure to include African Americans in PGX studies may lead to increased health disparities. PGX studies focused on patients of African American descent are needed to identify relevant population specific genetic predictors of drug responses. Recruitment is one barrier to African American participation in PGX. Addressing recruitment challenges is a significant, yet potentially low-cost solution to improve patient accrual and retention. Limited literature exists about African American participation in PGX research, but studies have explored barriers and facilitators among African American participation in genomic studies more broadly. This paper synthesizes the existing literature and extrapolates these findings to PGX studies, with a particular focus on opportunities for message design. Findings from this review can provide guidance for future PGX study recruitment.

In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research

“…Scholars studying the impact of race and ethnicity on views about return of genetic results have suggested that lower interest among minority groups may reflect concerns about a lack of access to healthcare that would allow them to follow up on actionable results [15] and distrust in the clinical and/or research community [10,48]. Similar concerns may exist among our participants from racial and ethnic minorities, though they may be further compounded by participants' "othering" within their communities.…”

Engagement and return of results preferences among a primarily African American genomic sequencing research cohort

“…African American participants are notably underrepresented in genomics research. 1 There are numerous reasons for this inequity, including mistrust, lack of awareness and access, concerns about the use of samples, and a desire for personal or community benefits. 1 Many of these originate from a history and persistence of unjust clinical and research practices [2][3][4] and the resultant untrustworthiness of medical institutions.…”

Underrepresented patient views and perceptions of personalized medication treatment through pharmacogenomics

“…Despite these seemingly positive implications, public willingness to participate in genetic testing to inform medical care and views about pharmacogenomics use in clinical settings varies across demographic groups 1 , 14 , 15 . African Americans, who are at greater risk for experiencing health disparities 16 , 17 have been largely underrepresented in pharmacogenomic studies 18 . Though less likely to be included and participate in pharmacogenomic implementation studies, African American, or Black, patients have focused more on the positive benefits of personalized medicine (e.g., fewer side effects and less trial and error prescribing) than White patients 19 .…”