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Verfasst von:Koido, Kati [VerfasserIn]   i
 Malmgren, Charlotta Ingvoldstad [VerfasserIn]   i
 Pojskic, Lejla [VerfasserIn]   i
 Almos, Peter Z. [VerfasserIn]   i
 Bergen, Sarah E. [VerfasserIn]   i
 Borg, Isabella [VerfasserIn]   i
 Božina, Nada [VerfasserIn]   i
 Coviello, Domenico A. [VerfasserIn]   i
 Degenhardt, Franziska [VerfasserIn]   i
 Ganoci, Lana [VerfasserIn]   i
 Jensen, Uffe B. [VerfasserIn]   i
 Durand-Lennad, Louise [VerfasserIn]   i
 Laurent-Levinson, Claudine [VerfasserIn]   i
 McQuillin, Andrew [VerfasserIn]   i
 Navickas, Alvydas [VerfasserIn]   i
 Pace, Nikolai P. [VerfasserIn]   i
 Paneque, Milena [VerfasserIn]   i
 Rietschel, Marcella [VerfasserIn]   i
 Grigoroiu-Serbanescu, Maria [VerfasserIn]   i
 Soller, Maria Johansson [VerfasserIn]   i
 Suvisaari, Jaana [VerfasserIn]   i
 Utkus, Algirdas [VerfasserIn]   i
 Van Assche, Evelien [VerfasserIn]   i
 Vissouze, Lily [VerfasserIn]   i
 Zuckerman, Shachar [VerfasserIn]   i
 Chaumette, Boris [VerfasserIn]   i
 Tammimies, Kristiina [VerfasserIn]   i
Titel:Lack of guidelines and translational knowledge is hindering the implementation of psychiatric genetic counseling and testing within Europe - A multi-professional survey study
Verf.angabe:Kati Koido, Charlotta Ingvoldstad Malmgren, Lejla Pojskic, Peter Z. Almos, Sarah E. Bergen, Isabella Borg, Nada Božina, Domenico A. Coviello, Franziska Degenhardt, Lana Ganoci, Uffe B. Jensen, Louise Durand-Lennad, Claudine Laurent-Levinson, Andrew McQuillin, Alvydas Navickas, Nikolai P. Pace, Milena Paneque, Marcella Rietschel, Maria Grigoroiu-Serbanescu, Maria Johansson Soller, Jaana Suvisaari, Algirdas Utkus, Evelien Van Assche, Lily Vissouze, Shachar Zuckerman, Boris Chaumette, Kristiina Tammimies
E-Jahr:2023
Jahr:3 July 2023
Umfang:10 S.
Fussnoten:Gesehen am 16.10.2023
Titel Quelle:Enthalten in: European journal of medical genetics
Ort Quelle:New York, NY [u.a.] : Elsevier, 2005
Jahr Quelle:2023
Band/Heft Quelle:66(2023), 8, Artikel-ID 104805, Seite 1-10
ISSN Quelle:1878-0849
Abstract:Genetic research has identified a large number of genetic variants, both rare and common, underlying neurodevelopmental disorders (NDD) and major psychiatric disorders. Currently, these findings are being translated into clinical practice. However, there is a lack of knowledge and guidelines for psychiatric genetic testing (PsychGT) and genetic counseling (PsychGC). The European Union-funded COST action EnGagE (CA17130) network was started to investigate the current implementation status of PsychGT and PsychGC across 35 participating European countries. Here, we present the results of a pan-European online survey in which we gathered the opinions, knowledge, and practices of a self-selected sample of professionals involved/interested in the field. We received answers from 181 respondents. The three main occupational categories were genetic counselor (21.0%), clinical geneticist (24.9%), and researcher (25.4%). Of all 181 respondents, 106 provide GC for any psychiatric disorder or NDD, corresponding to 58.6% of the whole group ranging from 43.2% in Central Eastern Europe to 66.1% in Western Europe. Overall, 65.2% of the respondents reported that genetic testing is offered to individuals with NDD, and 26.5% indicated the same for individuals with major psychiatric disorders. Only 22.1% of the respondents indicated that they have guidelines for PsychGT. Pharmacogenetic testing actionable for psychiatric disorders was offered by 15%. Interestingly, when genetic tests are fully covered by national health insurance, more genetic testing is provided for individuals with NDD but not those with major psychiatric disorders. Our qualitative analyses of responses highlight the lack of guidelines and knowledge on utilizing and using genetic tests and education and training as the major obstacles to implementation. Indeed, the existence of psychiatric genetic training courses was confirmed by only 11.6% of respondents. The question on the relevance of up-to-date education and training in psychiatric genetics on everyday related practice was highly relevant. We provide evidence that PsychGC and PsychGT are already in use across European countries, but there is a lack of guidelines and education. Harmonization of practice and development of guidelines for genetic counseling, testing, and training professionals would improve equality and access to quality care for individuals with psychiatric disorders within Europe.
DOI:doi:10.1016/j.ejmg.2023.104805
URL:Bitte beachten Sie: Dies ist ein Bibliographieeintrag. Ein Volltextzugriff für Mitglieder der Universität besteht hier nur, falls für die entsprechende Zeitschrift/den entsprechenden Sammelband ein Abonnement besteht oder es sich um einen OpenAccess-Titel handelt.

Volltext: https://doi.org/10.1016/j.ejmg.2023.104805
 Volltext: https://www.sciencedirect.com/science/article/pii/S1769721223001118
 DOI: https://doi.org/10.1016/j.ejmg.2023.104805
Datenträger:Online-Ressource
Sprache:eng
Sach-SW:Clinical genetic and pharmacogenetic testing
 Genetic counseling
 Healthcare implementation
 Neurodevelopmental disorders
 Psychiatric disorders
K10plus-PPN:1865700452
Verknüpfungen:→ Zeitschrift

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