Attitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future health.
Journal
European journal of human genetics : EJHG
ISSN: 1476-5438
Titre abrégé: Eur J Hum Genet
Pays: England
ID NLM: 9302235
Informations de publication
Date de publication:
10 2022
10 2022
Historique:
received:
07
03
2021
accepted:
13
09
2021
revised:
01
09
2021
pubmed:
16
11
2021
medline:
14
10
2022
entrez:
15
11
2021
Statut:
ppublish
Résumé
Clinical relevance of genetic testing is increasing in autism spectrum disorder (ASD). Information about genetic risk may contribute to improved diagnostics, treatment and family planning, but may also be perceived as a burden. Knowledge about the families' preferences with regard to genetic risk information is important for both health care professionals and policy makers. We investigated attitudes towards sharing information about genetic risk of ASD and knowledge about future health among parent members of the Norwegian Autism Association (N = 1455) using a questionnaire, and the relationships with parent and child characteristics, such as age, gender and ASD severity. Most preferred autonomy in deciding whom to inform about genetic risk of ASD (74.4%) and a minority supported extensive intra-familial disclosure of the genetic risk (41.1%). The majority agreed that it is an obligation to know as much as possible relevant for future health (58.0%) and only 51.7% agreed to a principle of a 'right not to know'. In regression models, the attitudes were associated with opinions about benefits and harms of genetic testing (e.g., treatment, family planning, understanding of ASD pathology, insurance discrimination and family conflict). In sum, the findings show that most parents want to know as much as possible relevant for their children's future health and keep their autonomy and intra-familial confidentiality about genetic risk information. Nearly half of the parents were not concerned with a "right not to know". These attitudes can inform development of guidelines and bioethics in the age of genomic precision medicine.
Identifiants
pubmed: 34776508
doi: 10.1038/s41431-021-00966-y
pii: 10.1038/s41431-021-00966-y
pmc: PMC9553933
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1138-1146Commentaires et corrections
Type : ErratumIn
Informations de copyright
© 2021. The Author(s).
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