Trial reportMolecular genetics & genomic medicine2019
Parents' perceptions of diagnostic genetic testing for children with inherited retinal disease in China.
Trial report in Molecular genetics & genomic medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed.
- Parents' perceptions of diagnostic genetic testing for children with inherited retinal disease in China.Molecular genetics & genomic medicine · 2019Trial
- Knowledge, attitudes, and practices among guardians toward inherited retinal diseases: a structural equation modeling analysis.Scientific reports · 2026Article
- Genetic testing and reproductive decision-making in Chinese families with inherited retinal disease: a cross-sectional study.Frontiers in medicine · 2026Article
- Parental knowledge and attitudes toward genetic counseling and childhood genetic testing for congenital anomalies in Qatar.Journal of genetic counseling · 2025Article
- Article
- Predicting Marfan Syndrome in Children With Congenital Ectopia Lentis: Development and Validation of a Nomogram.Translational vision science & technology · 2024Article
- Nigerian parents' perspectives on genetic testing in their children with genetic eye diseases.Journal of community genetics · 2023Article
- Differential diagnosis of Marfan syndrome based on ocular biologic parameters.Annals of translational medicine · 2020Article
- Parental genetic knowledge and attitudes toward childhood genetic testing for inherited eye diseases.Molecular genetics & genomic medicine · 2020Article
- The Impact of Inherited Retinal Diseases in the Republic of Ireland (ROI) and the United Kingdom (UK) from a Cost-of-Illness Perspective.Clinical ophthalmology (Auckland, N.Z.) · 2020Review
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Authors and funding
8 authors.
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No grant is acknowledged in the PubMed record.
Abstract
backgroundIn this study, we aim to investigate the awareness of, attitudes toward, and experiences with diagnostic genetic testing among parents of children suspected of having inherited retinal disease (IRDs) in China.
methodsSemistructured, face-to-face, and in-depth interviews were carried out with parents of children with suspected IRDs in this qualitative study. Inductive content analysis was used for data processing.
resultsForty-six parents participated in our interviews, and 47.8% of them supported genetic testing for following four main reasons: to help in making informed reproductive health decisions, to prepare for novel potential treatment, to identify the underlying causes of IRDs, and to satisfy curiosity about the heredity of IRDs. Among them, 19.6% were opposed to the testing for four main reasons, namely lack of therapeutic benefit, difficulty in affording the testing cost, doubt in the accuracy of clinical diagnosis, and the presence of concerns about the limitations of genetic testing. 47.8% of the parents expressed concerns that the genetic findings might lead to potential psychological stress.
conclusionIn this study, we showed that nearly half of the parents supported genetic testing mainly for family planning, and a fifth of the parents were opposed to the testing mainly for lack of therapeutic benefit. Moreover, half of the parents expressed concern that a positive genetic result may create potential psychological burden to the parents and children.
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