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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...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
2021
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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. |
format | Online Article Text |
id | pubmed-8495890 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
record_format | MEDLINE/PubMed |
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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