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

Abstract

Background: An increasing number of direct-to-consumer (DTC) genetic testing companies have started offering tests for carrier status of autosomal recessive disorders. Materials & Methods: 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. Results & Conclusion: 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.

Keywords::

• attitudes
• carrier screening
• cystic fibrosis
• direct-to-consumer
• preconception

Financial & competing interests disclosure

This research was supported by the Clinical Research Fund UZ Ghent and the Research Fund Flanders. LH is affiliated to a hospital that offers a cystic fibrosis carrier test on their website. She received a grant by the Netherlands Organisation for Health Research and Development to study public interest in this test. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

The authors state that they have obtained appropriate institutional review board approval or have followed the principles outlined in the Declaration of Helsinki for all human or animal experimental investigations. In addition, for investigations involving human subjects, informed consent has been obtained from the participants involved.

Additional information

Funding

This research was supported by the Clinical Research Fund UZ Ghent and the Research Fund Flanders. LH is affiliated to a hospital that offers a cystic fibrosis carrier test on their website. She received a grant by the Netherlands Organisation for Health Research and Development to study public interest in this test. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.