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

ABSTRACT:

Background

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.

Methods

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.

Results

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%

SUBMITTER: Zhang Y 

PROVIDER: S-EPMC6732314 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature