Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq
Maine Medical Center Research Institute
Genetics in medicine : official journal of the American College of Medical Genetics
Adult, African Americans, African Continental Ancestry Group, Attitude, Caribbean Region, Cohort Studies, Ethnic Groups, Female, Genome, Human, Genomics, Genotype, Health Knowledge, Attitudes, Practice, Humans, Knowledge, Male, Middle Aged, Motivation, Phenotype, Surveys and Questionnaires
PURPOSE: Racial minority populations are underrepresented in genomics research. This study enrolled African-descended individuals in a sequencing study and reported their characteristics.
METHODS: We purposively recruited 467 individuals self-identified as African, African American, or Afro-Caribbean to the ClinSeq
RESULTS: Recruitment took five years and 83% of enrollees completed the survey. Participants had modest knowledge about benefits and limitations of sequencing (x̅s = 5.1, ranges: 0-10), and less than the original cohort (x̅ = 7.5 and 7.7, respectively). Common motivations to enroll were learning information relevant to personal health (49%) or family members' health (33%), and most had realistic expectations of sequencing. Like the original cohort, they had high levels of optimism, openness, and resilience.
CONCLUSION: Early adopters may have relatively consistent personality traits irrespective of majority/minority status and recruitment methods, but high levels of genomics knowledge are not universal. Research should determine whether recruitment and consent procedures provide adequate education to promote informed choices and realistic expectations, which are vital to ethical research and increasing genomics research participation in underrepresented communities.
Lewis, Katie L; Heidlebaugh, Alexis R; Epps, Sandra; Han, Paul K J; Fishler, Kristen P; Klein, William M P; Miller, Ilana M; Ng, David; Hepler, Charlotte; Biesecker, Barbara B; and Biesecker, Leslie G, "Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq" (2019). Maine Medical Center. 1659.