Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq® cohort

Katie L. Lewis, Alexis R. Heidlebaugh, Sandra Epps, Paul K.J. Han, Kristen P. Fishler, William M.P. Klein, Ilana M. Miller, David Ng, Charlotte Hepler, Barbara B. Biesecker, Leslie G. Biesecker

Research output: Contribution to journalArticle

3 Scopus citations

Abstract

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® study and surveyed them about knowledge, motivations, expectations, and traits. Summary statistics were calculated and compared with data from the study’s original cohort, which was primarily White and self-referred. 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.

Original languageEnglish (US)
Pages (from-to)1355-1362
Number of pages8
JournalGenetics in Medicine
Volume21
Issue number6
DOIs
StatePublished - Jun 1 2019

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Keywords

  • diversity
  • early adopters
  • genome sequencing
  • informed choice
  • recruitment

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Lewis, K. L., Heidlebaugh, A. R., Epps, S., Han, P. K. J., Fishler, K. P., Klein, W. M. P., Miller, I. M., Ng, D., Hepler, C., Biesecker, B. B., & Biesecker, L. G. (2019). Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq® cohort. Genetics in Medicine, 21(6), 1355-1362. https://doi.org/10.1038/s41436-018-0341-9