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

Sandra Janssens (UGent) , Louiza Kalokairinou, Davit Chokoshvilli, Carmen Binst, Inge Mahieu, Lidewij Henneman, Anne De Paepe (UGent) and Pascal Borry
(2015) PERSONALIZED MEDICINE. 12(2). p.99-107
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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
carrier screening, attitudes, cystic fibrosis, direct-to-consumer, preconception, PERSONAL GENOMIC TESTS, INFORMATION, ISSUES, PERCEPTIONS, EXPERIENCES, PHYSICIANS, AWARENESS

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MLA
Janssens, Sandra, et al. “Attitudes of Cystic Fibrosis Patients and Their Parents towards Direct-to-Consumer Genetic Testing for Carrier Status.” PERSONALIZED MEDICINE, vol. 12, no. 2, 2015, pp. 99–107, doi:10.2217/PME.14.75.
APA
Janssens, S., Kalokairinou, L., Chokoshvilli, D., Binst, C., Mahieu, I., Henneman, L., … Borry, P. (2015). Attitudes of cystic fibrosis patients and their parents towards direct-to-consumer genetic testing for carrier status. PERSONALIZED MEDICINE, 12(2), 99–107. https://doi.org/10.2217/PME.14.75
Chicago author-date
Janssens, Sandra, Louiza Kalokairinou, Davit Chokoshvilli, Carmen Binst, Inge Mahieu, Lidewij Henneman, Anne De Paepe, and Pascal Borry. 2015. “Attitudes of Cystic Fibrosis Patients and Their Parents towards Direct-to-Consumer Genetic Testing for Carrier Status.” PERSONALIZED MEDICINE 12 (2): 99–107. https://doi.org/10.2217/PME.14.75.
Chicago author-date (all authors)
Janssens, Sandra, Louiza Kalokairinou, Davit Chokoshvilli, Carmen Binst, Inge Mahieu, Lidewij Henneman, Anne De Paepe, and Pascal Borry. 2015. “Attitudes of Cystic Fibrosis Patients and Their Parents towards Direct-to-Consumer Genetic Testing for Carrier Status.” PERSONALIZED MEDICINE 12 (2): 99–107. doi:10.2217/PME.14.75.
Vancouver
1.
Janssens S, Kalokairinou L, Chokoshvilli D, Binst C, Mahieu I, Henneman L, et al. Attitudes of cystic fibrosis patients and their parents towards direct-to-consumer genetic testing for carrier status. PERSONALIZED MEDICINE. 2015;12(2):99–107.
IEEE
[1]
S. Janssens et al., “Attitudes of cystic fibrosis patients and their parents towards direct-to-consumer genetic testing for carrier status,” PERSONALIZED MEDICINE, vol. 12, no. 2, pp. 99–107, 2015.
@article{6717817,
  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.}},
  author       = {{Janssens, Sandra and Kalokairinou, Louiza and Chokoshvilli, Davit and Binst, Carmen and Mahieu, Inge and Henneman, Lidewij and De Paepe, Anne and Borry, Pascal}},
  issn         = {{1741-0541}},
  journal      = {{PERSONALIZED MEDICINE}},
  keywords     = {{carrier screening,attitudes,cystic fibrosis,direct-to-consumer,preconception,PERSONAL GENOMIC TESTS,INFORMATION,ISSUES,PERCEPTIONS,EXPERIENCES,PHYSICIANS,AWARENESS}},
  language     = {{eng}},
  number       = {{2}},
  pages        = {{99--107}},
  title        = {{Attitudes of cystic fibrosis patients and their parents towards direct-to-consumer genetic testing for carrier status}},
  url          = {{http://doi.org/10.2217/PME.14.75}},
  volume       = {{12}},
  year         = {{2015}},
}
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