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

Katie L. Lewis, Erin Turbitt, Priscilla A. Chan, Sandra Epps, Barbara B. Biesecker, Lori A.H. Erby, Grace Ann Fasaye, Leslie G. Biesecker

Research output: Contribution to journalArticlepeer-review

Abstract

Genomics researchers are increasingly interested in what constitutes effective engagement of individuals from underrepresented groups. This is critical for longitudinal projects needed to inform the implementation of precision medicine. Return of results is one opportunity for engagement. The aims of this study were to determine participant perspectives on optimal engagement strategies and priorities for return of results and the extent to which focus groups were an effective modality for gathering input on these topics. We conducted six professionally moderated focus groups with 49 participants in a genomics research study. Transcripts from audio-recorded sessions were coded by two researchers and themes were discussed with the wider research team. All groups raised the issue of mistrust. Individuals participated nonetheless to contribute their perspectives and benefit their community. Many group members preferred engagement modalities that are offered to all participants and allow them to share the nuances of their perspectives over the use of participant representatives and surveys. All groups created a consensus ranking for result return priorities. Results for life-threatening conditions were the highest priority to return, followed by those related to treatable conditions that affect physical or mental health. We advocate for engagement strategies that reach as many participants as possible and allow them to share their perspectives in detail. Such strategies are valued by participants, can be effective for developing return of results policies, and may help institutions become more trustworthy.

Original languageEnglish (US)
Pages (from-to)894-902
Number of pages9
JournalAmerican journal of human genetics
Volume108
Issue number5
DOIs
StatePublished - May 6 2021
Externally publishedYes

Keywords

  • African Americans
  • focus groups
  • genome sequencing
  • patient engagement
  • patient preference
  • result return

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

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