TY - JOUR
T1 - Returning genomic results in a Federally Qualified Health Center
T2 - the intersection of precision medicine and social determinants of health
AU - Shaibi, Gabriel Q.
AU - Kullo, Iftikhar J.
AU - Singh, Davinder P.
AU - Hernandez, Valentina
AU - Sharp, Richard R.
AU - Cuellar, Idali
AU - De Filippis, Eleanna
AU - Levey, Sharon
AU - Breitkopf, Carmen Radecki
AU - Mandarino, Lawrence J.
AU - Yang, Ping
AU - Thibodeau, Stephen N.
AU - Lindor, Noralane M.
N1 - Funding Information:
This project was supported through the eMERGE Network and funded by NHGRI through grant U01HG6379 to the Mayo Clinic. Additional support was provided by the Mayo Clinic Center for Individualized Medicine. We thank Dr. Faiz Naioom and the Mountain Park Health Center providers and staff for their support. We are indebted to the Sangre Por Salud Biobank Community Advisory Board for their contributions, support, and dedication to ensuring that the needs of the local community are considered in genomic medicine research.
Publisher Copyright:
© 2020, American College of Medical Genetics and Genomics.
PY - 2020/9/1
Y1 - 2020/9/1
N2 - 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.
AB - 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.
KW - FQHC
KW - Latino
KW - RoR
KW - disparities
KW - implementation
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U2 - 10.1038/s41436-020-0806-5
DO - 10.1038/s41436-020-0806-5
M3 - Article
C2 - 32371921
AN - SCOPUS:85085113217
SN - 1098-3600
VL - 22
SP - 1552
EP - 1559
JO - Genetics in Medicine
JF - Genetics in Medicine
IS - 9
ER -