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Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health.

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...

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Autores principales: Shaibi, Gabriel Q., Kullo, Iftikhar J., Singh, Davinder P., Hernandez, Valentina, Sharp, Richard R., Cuellar, Idali, De Filippis, Eleanna, Levey, Sharon, Breitkopf, Carmen Radecki, Mandarino, Lawrence J., Yang, Ping, Thibodeau, Stephen N., Lindor, Noralane M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7483616/
https://www.ncbi.nlm.nih.gov/pubmed/32371921
http://dx.doi.org/10.1038/s41436-020-0806-5
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author Shaibi, Gabriel Q.
Kullo, Iftikhar J.
Singh, Davinder P.
Hernandez, Valentina
Sharp, Richard R.
Cuellar, Idali
De Filippis, Eleanna
Levey, Sharon
Breitkopf, Carmen Radecki
Mandarino, Lawrence J.
Yang, Ping
Thibodeau, Stephen N.
Lindor, Noralane M.
author_facet Shaibi, Gabriel Q.
Kullo, Iftikhar J.
Singh, Davinder P.
Hernandez, Valentina
Sharp, Richard R.
Cuellar, Idali
De Filippis, Eleanna
Levey, Sharon
Breitkopf, Carmen Radecki
Mandarino, Lawrence J.
Yang, Ping
Thibodeau, Stephen N.
Lindor, Noralane M.
author_sort Shaibi, Gabriel Q.
collection PubMed
description 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: 500 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 non-biological factors that contribute to disparities will be necessary to better appreciate how genomic medicine may fit within the context of health equity.
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spelling pubmed-74836162020-11-06 Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health. Shaibi, Gabriel Q. Kullo, Iftikhar J. Singh, Davinder P. Hernandez, Valentina Sharp, Richard R. Cuellar, Idali De Filippis, Eleanna Levey, Sharon Breitkopf, Carmen Radecki Mandarino, Lawrence J. Yang, Ping Thibodeau, Stephen N. Lindor, Noralane M. Genet Med Article 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: 500 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 non-biological factors that contribute to disparities will be necessary to better appreciate how genomic medicine may fit within the context of health equity. 2020-05-06 2020-09 /pmc/articles/PMC7483616/ /pubmed/32371921 http://dx.doi.org/10.1038/s41436-020-0806-5 Text en http://www.nature.com/authors/editorial_policies/license.html#terms Users may view, print, copy, and download text and data-mine the content in such documents, for the purposes of academic research, subject always to the full Conditions of use:http://www.nature.com/authors/editorial_policies/license.html#terms
spellingShingle Article
Shaibi, Gabriel Q.
Kullo, Iftikhar J.
Singh, Davinder P.
Hernandez, Valentina
Sharp, Richard R.
Cuellar, Idali
De Filippis, Eleanna
Levey, Sharon
Breitkopf, Carmen Radecki
Mandarino, Lawrence J.
Yang, Ping
Thibodeau, Stephen N.
Lindor, Noralane M.
Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health.
title Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health.
title_full Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health.
title_fullStr Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health.
title_full_unstemmed Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health.
title_short Returning Genomic Results in a Federally Qualified Health Center: The intersection of precision medicine and social determinants of health.
title_sort returning genomic results in a federally qualified health center: the intersection of precision medicine and social determinants of health.
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7483616/
https://www.ncbi.nlm.nih.gov/pubmed/32371921
http://dx.doi.org/10.1038/s41436-020-0806-5
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