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dc.contributor.authorJohannessen, Jarle
dc.contributor.authorNærland, Terje
dc.contributor.authorHope, Sigrun
dc.contributor.authorTorske, Tonje
dc.contributor.authorKaale, Anett
dc.contributor.authorWirgenes, Katrine V.
dc.contributor.authorMalt, Eva
dc.contributor.authorDjurovic, Srdjan
dc.contributor.authorRietschel, Marcella
dc.contributor.authorAndreassen, Ole A.
dc.description.abstractClinical 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.en_US
dc.publisherSpringer Natureen_US
dc.rightsNavngivelse 4.0 Internasjonal*
dc.titleAttitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future healthen_US
dc.typeJournal articleen_US
dc.typePeer revieweden_US
dc.rights.holderCopyright The Author(s) 2021en_US
dc.source.journalEuropean Journal of Human Geneticsen_US
dc.identifier.citationEuropean Journal of Human Genetics, 2021.en_US

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Navngivelse 4.0 Internasjonal
Except where otherwise noted, this item's license is described as Navngivelse 4.0 Internasjonal