Ethnic identity and engagement with genome sequencing research

Genet Med. 2019 Aug;21(8):1735-1743. doi: 10.1038/s41436-018-0410-0. Epub 2018 Dec 20.

Abstract

Purpose: We examined the role of ethnic identity (which measures the degree to which individuals identify with their ethnic group) in beliefs about, and intentions to learn, genomic results.

Methods: A longitudinal cohort was recruited to implement genome sequencing among healthy participants self-identifying as African, African American, or Afro-Caribbean, 40-65 years old (n = 408). Before receiving genomic results, participants completed a survey assessing social and behavioral constructs related to health, genomics, and ethnic identity.

Results: Ethnic identity was positively correlated with perceived value of genomic results and expected benefits from genomic research participation. Among participants with stronger ethnic identity, cognitive beliefs (perceived value of results [b = 0.63, 95% confidence interval: 0.29, 0.98, p < 0.001] and expected benefits from genomic research participation [b = 0.32, 95% confidence interval: 0.12, 0.53, p = 0.002]) were associated with intentions to receive results. Among those with weaker ethnic identity, there was no such association.

Conclusion: Individuals with stronger ethnic identity seem to attend more to cognitive beliefs such as the value of genomic results when deliberating receipt of results compared with those with weaker ethnic identity. Understanding ethnic identity variation and its influence on genome sequencing perceptions and intentions can inform future research opportunities using ethnic identity to explore specific practical, clinical questions.

Keywords: diversity; ethnic identity; ethnicity; genome sequencing; race.

Publication types

  • Research Support, N.I.H., Intramural

MeSH terms

  • Adult
  • African Americans / statistics & numerical data
  • Aged
  • Cohort Studies
  • Continental Population Groups / statistics & numerical data
  • Ethnic Groups / statistics & numerical data*
  • Female
  • Genome, Human*
  • Humans
  • Intention
  • Male
  • Middle Aged
  • Surveys and Questionnaires
  • Whole Genome Sequencing / statistics & numerical data*