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Increasing access to individualized medicine: A matched-cohort study examining Latino participant experiences of genomic screening

PURPOSE: Multiple efforts are underway to increase the inclusion of racial minority participants in genomic research and new forms of individualized medicine. These efforts should include studies that characterize how individuals from minority communities experience genomic medicine in diverse healt...

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Autores principales: Pacyna, Joel E., Shaibi, Gabriel Q., Lee, Alex, O Byrne, Jamie, Cuellar, Idali, Sutton, Erica J., Hernandez, Valentina, Lindor, Noralane M., Singh, Davinder, Kullo, Iftikhar J., Sharp, Richard R.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8495890/
https://www.ncbi.nlm.nih.gov/pubmed/33500569
http://dx.doi.org/10.1038/s41436-020-01079-5
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author Pacyna, Joel E.
Shaibi, Gabriel Q.
Lee, Alex
O Byrne, Jamie
Cuellar, Idali
Sutton, Erica J.
Hernandez, Valentina
Lindor, Noralane M.
Singh, Davinder
Kullo, Iftikhar J.
Sharp, Richard R.
author_facet Pacyna, Joel E.
Shaibi, Gabriel Q.
Lee, Alex
O Byrne, Jamie
Cuellar, Idali
Sutton, Erica J.
Hernandez, Valentina
Lindor, Noralane M.
Singh, Davinder
Kullo, Iftikhar J.
Sharp, Richard R.
author_sort Pacyna, Joel E.
collection PubMed
description PURPOSE: Multiple efforts are underway to increase the inclusion of racial minority participants in genomic research and new forms of individualized medicine. These efforts should include studies that characterize how individuals from minority communities experience genomic medicine in diverse healthcare settings and how they integrate genetic knowledge into their understandings of healthcare needs. METHODS: As part of a large, multisite genomic sequencing study, we surveyed individuals to assess their decision to pursue genomic risk evaluation. Participants included Latino patients recruited at Mountain Park Health Center, a Federally Qualified Health Center in Phoenix, AZ, and non-Latino patients recruited at a large academic medical center (Mayo Clinic in Rochester, MN). Both groups agreed to receive individualized genomic risk assessments. RESULTS: Comparisons between cohorts showed that Latino respondents had lower levels of decisional conflict about pursuing genomic screening but generally scored lower on genetic knowledge. Latino respondents were also more likely to have concerns about the misuse of genomic information, despite both groups having similar views about the value of genomic risk evaluation. CONCLUSION: Our results highlight the importance of evaluating sociocultural factors that influence minority patient engagement with genomic medicine in diverse healthcare settings.
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spelling pubmed-84958902021-10-07 Increasing access to individualized medicine: A matched-cohort study examining Latino participant experiences of genomic screening Pacyna, Joel E. Shaibi, Gabriel Q. Lee, Alex O Byrne, Jamie Cuellar, Idali Sutton, Erica J. Hernandez, Valentina Lindor, Noralane M. Singh, Davinder Kullo, Iftikhar J. Sharp, Richard R. Genet Med Article PURPOSE: Multiple efforts are underway to increase the inclusion of racial minority participants in genomic research and new forms of individualized medicine. These efforts should include studies that characterize how individuals from minority communities experience genomic medicine in diverse healthcare settings and how they integrate genetic knowledge into their understandings of healthcare needs. METHODS: As part of a large, multisite genomic sequencing study, we surveyed individuals to assess their decision to pursue genomic risk evaluation. Participants included Latino patients recruited at Mountain Park Health Center, a Federally Qualified Health Center in Phoenix, AZ, and non-Latino patients recruited at a large academic medical center (Mayo Clinic in Rochester, MN). Both groups agreed to receive individualized genomic risk assessments. RESULTS: Comparisons between cohorts showed that Latino respondents had lower levels of decisional conflict about pursuing genomic screening but generally scored lower on genetic knowledge. Latino respondents were also more likely to have concerns about the misuse of genomic information, despite both groups having similar views about the value of genomic risk evaluation. CONCLUSION: Our results highlight the importance of evaluating sociocultural factors that influence minority patient engagement with genomic medicine in diverse healthcare settings. 2021-01-26 2021-05 /pmc/articles/PMC8495890/ /pubmed/33500569 http://dx.doi.org/10.1038/s41436-020-01079-5 Text en http://www.nature.com/authors/editorial_policies/license.html#termsUsers 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
Pacyna, Joel E.
Shaibi, Gabriel Q.
Lee, Alex
O Byrne, Jamie
Cuellar, Idali
Sutton, Erica J.
Hernandez, Valentina
Lindor, Noralane M.
Singh, Davinder
Kullo, Iftikhar J.
Sharp, Richard R.
Increasing access to individualized medicine: A matched-cohort study examining Latino participant experiences of genomic screening
title Increasing access to individualized medicine: A matched-cohort study examining Latino participant experiences of genomic screening
title_full Increasing access to individualized medicine: A matched-cohort study examining Latino participant experiences of genomic screening
title_fullStr Increasing access to individualized medicine: A matched-cohort study examining Latino participant experiences of genomic screening
title_full_unstemmed Increasing access to individualized medicine: A matched-cohort study examining Latino participant experiences of genomic screening
title_short Increasing access to individualized medicine: A matched-cohort study examining Latino participant experiences of genomic screening
title_sort increasing access to individualized medicine: a matched-cohort study examining latino participant experiences of genomic screening
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8495890/
https://www.ncbi.nlm.nih.gov/pubmed/33500569
http://dx.doi.org/10.1038/s41436-020-01079-5
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