Obtaining insurance after DNA diagnostics: A survey among hypertrophic cardiomyopathy mutation carriers

Imke Christiaans*, Tjitske M. Kok, Irene M. Van Langen, Erwin Birnie, Gouke J. Bonsel, Arthur A. M. Wilde, Ellen M. A. Smets

*Bijbehorende auteur voor dit werk

OnderzoeksoutputAcademicpeer review

12 Citaten (Scopus)

Samenvatting

Hypertrophic cardiomyopathy (HCM) is a common hereditary heart disease associated with increased mortality. Disclosure of DNA test results may have social implications such as low access to insurance. In the Netherlands, insurance companies are restricted in the use of genetic information of their clients by the Medical Examination Act. A cross-sectional survey was used to assess the frequency and type of problems encountered by HCM mutation carriers applying for insurance, and associations with carriers characteristics. The response rate was 86% (228/264). A total of 66 carriers (29%) applied for insurance of whom 39 reported problems (59%) during an average follow-up of 3 years since the DNA test result. More problems were encountered by carriers with manifest disease (P0.001) and carriers with symptoms of HCM (P0.049). Carriers identified after predictive DNA testing less frequently experienced problems (P0.002). Three carriers without manifest HCM reported problems (5% of applicants). Frequently reported problems were higher premium (72%), grant access to medical records (62%), and complete rejection (33%). In conclusion, HCM mutation carriers frequently encounter problems when applying for insurances, often in the case of manifest disease, but the risk assessment of insurance companies is largely justified. Still, 5% of carriers encounter potentially unjustified problems, indicating the necessity to monitor the application of the existing laws and regulations by insurance companies and to educate counselees on the implications of these laws and regulations. © 2010 Macmillan Publishers Limited All rights reserved.
Originele taal-2English
Pagina's (van-tot)251-253
Aantal pagina's3
TijdschriftEuropean Journal of Human Genetics
Volume18
Nummer van het tijdschrift2
DOI's
StatusPublished - 1-feb-2010

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