Academic Journal
Digital genetic counseling services for cascade cardiogenetic testing
| Title: | Digital genetic counseling services for cascade cardiogenetic testing |
|---|---|
| Authors: | van Lingen, Marlies N, van Till, Sietske A L, Giesbertz, Noor A A, Beinema, Tessa C, Ausems, Margreet G E M, Klaassen, Randy, Cornel, Martina C, van den Heuvel, Lieke M, van Tintelen, J Peter, Genetica Groep Van Tintelen, Genetica, Genetica Klinische Genetica, Cancer, Child Health, Circulatory Health |
| Publication Year: | 2026 |
| Subject Terms: | Adult, Female, Focus Groups, Genetic Counseling/methods, Genetic Testing/methods, Humans, Male, Middle Aged, Journal Article |
| Description: | Digital interventions are potentially promising to improve accessibility and efficiency of genetic counseling services. However, current literature on user perspectives toward digital tools for cascade testing is limited. Therefore, this focus-group study aimed to gain insights into the attitude and perspectives of probands, at-risk relatives (ARR), and genetic healthcare professionals (HCP) toward digital innovations for assistance with both pretest and posttest counseling and cascade genetic testing in cardiogenetics. We conducted seven online focus groups, which were transcribed and thematically analyzed. In total, 37 individuals participated (10 probands, 11 ARR and 16 HCP). Thematic analysis of focus group transcripts showed a first theme of (1) acceptability of digital tools. Other identified themes were defined as "domains," where digital tools impact traditional, in-person clinical genetic care, being (2) family communication, (3) decision-making, (4) care relations, and (5) the genetic care system. Participants expressed a predominantly positive attitude toward the digitization of (parts of) the predictive genetic counseling journey in cardiogenetics under the condition that access to human contact is preserved. In the clinical setting of predictive counseling, efforts should be made to ensure access to genetic services for all ARR and to protect in-person involvement of HCP. |
| Document Type: | article in journal/newspaper |
| File Description: | application/pdf |
| Language: | English |
| ISSN: | 1059-7700 |
| Relation: | https://dspace.library.uu.nl/handle/1874/484709 |
| Availability: | https://dspace.library.uu.nl/handle/1874/484709 |
| Rights: | info:eu-repo/semantics/OpenAccess |
| Accession Number: | edsbas.FAC81ED5 |
| Database: | BASE |
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