Returning genomic results in a Federally Qualified Health Center: the intersection of precision medicine and social determinants of health

Gabriel Q. Shaibi, Iftikhar J. Kullo, Davinder P. Singh, Valentina Hernandez, Richard R. Sharp, Idali Cuellar, Eleanna De Filippis, Sharon Levey, Carmen Radecki Breitkopf, Lawrence J. Mandarino, Ping Yang, Stephen N. Thibodeau, Noralane M. Lindor

Research output: Contribution to journalArticle

1 Scopus citations

Abstract

Purpose: This report describes the return of sequencing results to low-income Latino participants recruited through a Federally Qualified Health Center (FQHC). We describe challenges in returning research results secondary to social determinants of health and present lessons learned to guide future genomic medicine implementation studies in low-resource settings. Methods: Five hundred Latino adults (76% women) consented to research sequencing for a predetermined panel of actionable genes. Providers and staff from the FQHC were engaged to align processes with the practice and a community advisory board grounded the project in the local community. Results: A pathogenic/likely pathogenic variant was present in 10 participants (2%). Challenges in return of results included the time lag (582 ± 53 days) between enrollment and returning actionable results, difficulty reaching participants, missed appointments, low health literacy, lack of health insurance, and reconciling results with limited information on family history. Return of one actionable result was deferred due to acute emotional distress secondary to recent traumatic life events. Conclusion: The social determinants of health influence the implementation of genomic medicine in low-income populations in low-resource settings. Considering nonbiological factors that contribute to disparities will be necessary to better appreciate how genomic medicine may fit within the context of health equity.

Original languageEnglish (US)
JournalGenetics in Medicine
DOIs
StateAccepted/In press - Jan 1 2020

Keywords

  • FQHC
  • Latino
  • RoR
  • disparities
  • implementation

ASJC Scopus subject areas

  • Genetics(clinical)

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