A mixed-methods study of cultural beliefs about dementia and genetic testing among Mexicans and Mexican-Americans at-risk for autosomal dominant Alzheimer's disease.
Alzheimer's disease
Hispanic
Mexican
autosomal dominant
clinical trials
cultural beliefs
dementia
genetic
testing
Journal
Journal of genetic counseling
ISSN: 1573-3599
Titre abrégé: J Genet Couns
Pays: United States
ID NLM: 9206865
Informations de publication
Date de publication:
10 2019
10 2019
Historique:
received:
12
05
2018
revised:
30
04
2019
accepted:
06
05
2019
pubmed:
18
6
2019
medline:
7
7
2020
entrez:
18
6
2019
Statut:
ppublish
Résumé
Trials to prevent autosomal dominantly inherited Alzheimer's disease (ADAD) are critical and timely. However, cultural beliefs about AD and genetic testing may preclude informed consent and participation, especially among racial/ethnic minorities. This mixed-methods study examines cultural beliefs about AD and genetic screening among at-risk populations of Mexican heritage. We surveyed 86 Mexican and 37 Mexican-American family members of patients with ADAD and interviewed 18 respondents in Mexico to explore perceptions and knowledge regarding AD and genetic testing. While most respondents understood that AD is inherited in their families, they also had limited understanding of the genetic mechanisms behind AD. Many believed that AD is a normal part of aging or that it is a mental illness caused by bad habits. However, beliefs that AD is caused by a curse or God's will were uncommon. The interviews demonstrated that very few at-risk respondents understood their own risk for harboring the mutation causing AD in their family. Once informed, most expressed a strong interest in genetic testing, largely motivated by the desire to be better prepared for the development of AD. Health professionals treating and investigators enrolling members from families with ADAD cannot assume that they fully understand the nature of the illness; therefore, providers should provide comprehensive information about ADAD and genetic testing.
Identifiants
pubmed: 31207006
doi: 10.1002/jgc4.1133
pmc: PMC7500864
mid: NIHMS1028473
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
921-932Subventions
Organisme : NIA NIH HHS
ID : U01 AG051218
Pays : United States
Organisme : FIC NIH HHS
ID : R21 TW009787
Pays : United States
Organisme : NINDS NIH HHS
ID : UH3 NS100614
Pays : United States
Organisme : ADRC
ID : P50 AG-005142
Pays : International
Organisme : NIH Fogarty Center
ID : R21TW009787
Pays : International
Organisme : NIA NIH HHS
ID : P50 AG005142
Pays : United States
Informations de copyright
© 2019 National Society of Genetic Counselors.
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