Attitudes of cystic fibrosis patients and their parents towards direct-to-consumer genetic testing for carrier status

• Published in: Personalized medicine Vol. 12; no. 2; pp. 99 - 107
• Main Authors: Janssens, Sandra, Kalokairinou, Louiza, Chokoshvilli, Davit, Binst, Carmen, Mahieu, Inge, Henneman, Lidewij, De Paepe, Anne, Borry, Pascal
• Format: Journal Article
• Language: English
• Published: England Future Medicine Ltd 01.03.2015
• Subjects: attitudes; Beliefs, opinions and attitudes; carrier screening; Cystic fibrosis; direct-to-consumer; Family; Genetic aspects; Genetic testing; Hospitals; Medical research; Parents; Patients; preconception; Studies; Surveys; direct-to-consumer; carrier screening; preconception; attitudes; cystic fibrosis
• ISSN: 1741-0541; 1744-828X
• DOI: 10.2217/pme.14.75

An increasing number of direct-to-consumer (DTC) genetic testing companies have started offering tests for carrier status of autosomal recessive disorders. A written questionnaire was administered to 47 patients and 65 parents of children with Cystic Fibrosis (CF), a common severe autosomal recessive disorder, to assess their views about the offer of DTC carrier tests. All participants were recruited from a CF patient registry in Belgium. We found that very few patients and parents were aware of the offer of DTC genetic testing for carrier status, and were generally skeptical. A strong preference for the healthcare system over commercial companies as the provider of the test was observed. However, many participants believe people should have a right to access DTC genetic tests provided by commercial companies.