Attitudes of Cystic Fibrosis Patients and Their Parents Towards Direct-to-Consumer Genetic Testing for Carrier Status

Sandra Janssens; Louiza Kalokairinou; Davit Chokoshvilli; Carmen Binst; Inge Mahieu; Lidewij Henneman; Anne De Paepe; Pascal Borry


Personalized Medicine. 2015;12(2):99-107. 

In This Article


Our study has revealed a low prior awareness of DTC genetic testing for carrier status among patients and parents of children with CF. Although study participants believed that people should have a right to access DTC genetic testing through commercial companies, only a small minority would themselves purchase a carrier test sold on the internet. However, majority of participants were willing to accept a similar test if offered by the regular healthcare services. This finding indicates that while the patients and parents of children with CF may be skeptical of the practice of commercial genetic testing, their views towards genetic testing for carrier status are largely positive.