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Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020

Introduction: Sharing genetic test results with different stakeholders such as family members, healthcare providers and genetic counselors (HCP/GCs), spouses/partners, and friends is a health behavior of clinical importance in genomic medicine. Methods: Using nationally representative population-bas...

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Autores principales: Makhnoon, Sukh, Yu, Robert, Peterson, Susan K, Shete, Sanjay
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9866851/
https://www.ncbi.nlm.nih.gov/pubmed/36675679
http://dx.doi.org/10.3390/jpm13010018
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author Makhnoon, Sukh
Yu, Robert
Peterson, Susan K
Shete, Sanjay
author_facet Makhnoon, Sukh
Yu, Robert
Peterson, Susan K
Shete, Sanjay
author_sort Makhnoon, Sukh
collection PubMed
description Introduction: Sharing genetic test results with different stakeholders such as family members, healthcare providers and genetic counselors (HCP/GCs), spouses/partners, and friends is a health behavior of clinical importance in genomic medicine. Methods: Using nationally representative population-based data collected from the Health Information National Trends Survey (HINTS 5, cycle 4), we identified the prevalence and factors associated with genetic test result-sharing behavior for high-risk cancer tests, genetic health risk tests, and ancestry tests within four groups: HCP/GCs, first-degree relatives (FDRs), spouse/partner, and friend/other. Results: Overall, 68.4% of those who underwent high-risk cancer genetic testing shared their results with FDRs, whereas 89.9% shared with HCP/GCs. In adjusted multivariable analyses, women were nine times more likely than men to share (p = 0.006), and those with a personal history of cancer were less likely to share with HCP/GCs (OR = 0.025, p ≤ 0.001). Of those tested for genetic health risk, 66.5% shared with HCP/GCs, 38.7% with FDRs, 66.6% with a spouse/partner, 12.8% with a friend, and 14.1% did not share results with anyone. Of those who underwent ancestry testing, very few shared results with HCP/GCs (2.6%), whereas modest sharing was reported with FDRs, spouses/partners, and friends. Discussion: These data add empirical evidence about the population prevalence of genetic information sharing and serve as a metric for public engagement with genetic testing.
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spelling pubmed-98668512023-01-22 Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020 Makhnoon, Sukh Yu, Robert Peterson, Susan K Shete, Sanjay J Pers Med Article Introduction: Sharing genetic test results with different stakeholders such as family members, healthcare providers and genetic counselors (HCP/GCs), spouses/partners, and friends is a health behavior of clinical importance in genomic medicine. Methods: Using nationally representative population-based data collected from the Health Information National Trends Survey (HINTS 5, cycle 4), we identified the prevalence and factors associated with genetic test result-sharing behavior for high-risk cancer tests, genetic health risk tests, and ancestry tests within four groups: HCP/GCs, first-degree relatives (FDRs), spouse/partner, and friend/other. Results: Overall, 68.4% of those who underwent high-risk cancer genetic testing shared their results with FDRs, whereas 89.9% shared with HCP/GCs. In adjusted multivariable analyses, women were nine times more likely than men to share (p = 0.006), and those with a personal history of cancer were less likely to share with HCP/GCs (OR = 0.025, p ≤ 0.001). Of those tested for genetic health risk, 66.5% shared with HCP/GCs, 38.7% with FDRs, 66.6% with a spouse/partner, 12.8% with a friend, and 14.1% did not share results with anyone. Of those who underwent ancestry testing, very few shared results with HCP/GCs (2.6%), whereas modest sharing was reported with FDRs, spouses/partners, and friends. Discussion: These data add empirical evidence about the population prevalence of genetic information sharing and serve as a metric for public engagement with genetic testing. MDPI 2022-12-22 /pmc/articles/PMC9866851/ /pubmed/36675679 http://dx.doi.org/10.3390/jpm13010018 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Makhnoon, Sukh
Yu, Robert
Peterson, Susan K
Shete, Sanjay
Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020
title Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020
title_full Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020
title_fullStr Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020
title_full_unstemmed Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020
title_short Clinical Cancer and Direct-to-Consumer Genetic Test Result-Sharing Behavior: Findings from HINTS 2020
title_sort clinical cancer and direct-to-consumer genetic test result-sharing behavior: findings from hints 2020
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9866851/
https://www.ncbi.nlm.nih.gov/pubmed/36675679
http://dx.doi.org/10.3390/jpm13010018
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