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Motivations for Participation in Parkinson Disease Genetic Research Among Hispanics versus Non-Hispanics

Involvement of participants from different racial and ethnic groups in genomic research is vital to reducing health disparities in the precision medicine era. Racial and ethnically diverse populations are underrepresented in current genomic research, creating bias in result interpretation. Limited i...

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Autores principales: Nuytemans, Karen, Manrique, Clara P., Uhlenberg, Aaron, Scott, William K., Cuccaro, Michael L., Luca, Corneliu C., Singer, Carlos, Vance, Jeffery M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6646686/
https://www.ncbi.nlm.nih.gov/pubmed/31379924
http://dx.doi.org/10.3389/fgene.2019.00658
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author Nuytemans, Karen
Manrique, Clara P.
Uhlenberg, Aaron
Scott, William K.
Cuccaro, Michael L.
Luca, Corneliu C.
Singer, Carlos
Vance, Jeffery M.
author_facet Nuytemans, Karen
Manrique, Clara P.
Uhlenberg, Aaron
Scott, William K.
Cuccaro, Michael L.
Luca, Corneliu C.
Singer, Carlos
Vance, Jeffery M.
author_sort Nuytemans, Karen
collection PubMed
description Involvement of participants from different racial and ethnic groups in genomic research is vital to reducing health disparities in the precision medicine era. Racial and ethnically diverse populations are underrepresented in current genomic research, creating bias in result interpretation. Limited information is available to support motivations or barriers of these groups to participate in genomic research for late-onset, neurodegenerative disorders. To evaluate willingness for research participation, we compared motivations for participation in genetic studies among 113 Parkinson disease (PD) patients and 49 caregivers visiting the Movement Disorders clinic at the University of Miami. Hispanics and non-Hispanics were equally motivated to participate in genetic research for PD. However, Hispanic patients were less likely to be influenced by the promise of scientific advancements (N = 0.01). This lack of scientific interest, but not other motivations, was found to be likely confounded by lower levels of obtained education (N = 0.001). Overall, these results suggest that underrepresentation of Hispanics in genetic research may be partly due to reduced invitations to these studies.
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spelling pubmed-66466862019-08-02 Motivations for Participation in Parkinson Disease Genetic Research Among Hispanics versus Non-Hispanics Nuytemans, Karen Manrique, Clara P. Uhlenberg, Aaron Scott, William K. Cuccaro, Michael L. Luca, Corneliu C. Singer, Carlos Vance, Jeffery M. Front Genet Genetics Involvement of participants from different racial and ethnic groups in genomic research is vital to reducing health disparities in the precision medicine era. Racial and ethnically diverse populations are underrepresented in current genomic research, creating bias in result interpretation. Limited information is available to support motivations or barriers of these groups to participate in genomic research for late-onset, neurodegenerative disorders. To evaluate willingness for research participation, we compared motivations for participation in genetic studies among 113 Parkinson disease (PD) patients and 49 caregivers visiting the Movement Disorders clinic at the University of Miami. Hispanics and non-Hispanics were equally motivated to participate in genetic research for PD. However, Hispanic patients were less likely to be influenced by the promise of scientific advancements (N = 0.01). This lack of scientific interest, but not other motivations, was found to be likely confounded by lower levels of obtained education (N = 0.001). Overall, these results suggest that underrepresentation of Hispanics in genetic research may be partly due to reduced invitations to these studies. Frontiers Media S.A. 2019-07-16 /pmc/articles/PMC6646686/ /pubmed/31379924 http://dx.doi.org/10.3389/fgene.2019.00658 Text en Copyright © 2019 Nuytemans, Manrique, Uhlenberg, Scott, Cuccaro, Luca, Singer and Vance http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Genetics
Nuytemans, Karen
Manrique, Clara P.
Uhlenberg, Aaron
Scott, William K.
Cuccaro, Michael L.
Luca, Corneliu C.
Singer, Carlos
Vance, Jeffery M.
Motivations for Participation in Parkinson Disease Genetic Research Among Hispanics versus Non-Hispanics
title Motivations for Participation in Parkinson Disease Genetic Research Among Hispanics versus Non-Hispanics
title_full Motivations for Participation in Parkinson Disease Genetic Research Among Hispanics versus Non-Hispanics
title_fullStr Motivations for Participation in Parkinson Disease Genetic Research Among Hispanics versus Non-Hispanics
title_full_unstemmed Motivations for Participation in Parkinson Disease Genetic Research Among Hispanics versus Non-Hispanics
title_short Motivations for Participation in Parkinson Disease Genetic Research Among Hispanics versus Non-Hispanics
title_sort motivations for participation in parkinson disease genetic research among hispanics versus non-hispanics
topic Genetics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6646686/
https://www.ncbi.nlm.nih.gov/pubmed/31379924
http://dx.doi.org/10.3389/fgene.2019.00658
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