Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases

@inproceedings{Krabbenborg2016UnderstandingTP,
  title={Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases},
  author={Lotte Krabbenborg and Lisenka E L M Vissers and Jolanda H Schieving and Tjitske Kleefstra and E. J. Kamsteeg and Joris A. Veltman and Mich{\`e}l A.A.P. Willemsen and Simone van der Burg},
  booktitle={Journal of Genetic Counseling},
  year={2016}
}
The use of whole exome sequencing (WES) for diagnostics of children with rare genetic diseases raises questions about best practices in genetic counselling. While a lot of attention is now given to pre-test counselling procedures for WES, little is known about how parents experience the (positive, negative, or inconclusive) WES results in daily life. To fill this knowledge gap, data were gathered through in-depth interviews with parents of 15 children who underwent WES analysis. WES test… CONTINUE READING

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