Parents' perceptions of diagnostic genetic testing for children with inherited retinal disease in China

Molecular Genetics & Genomic Medicine
Yu ZhangXiaoyan Ding

Abstract

In 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. Semistructured, 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. Forty-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. In this study, we showed that nearly half of the parents supported genetic testing mainly for family planning, and a fifth of the parents w...Continue Reading

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Citations

Jul 15, 2020·Molecular Genetics & Genomic Medicine·Yu ZhangXiaoyan Ding
May 5, 2021·Journal of Genetic Counseling·Qun WangGuoyu Wang

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