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

Area of Science:

• Genetics
• Cardiology
• Public Health

Background:

• Hypertrophic cardiomyopathy (HCM) is a prevalent hereditary heart condition linked to higher mortality rates.
• Genetic testing for HCM reveals mutation carrier status, which can lead to social challenges, including restricted access to insurance coverage.
• The Netherlands' Medical Examination Act limits how insurance companies can utilize clients' genetic information.

Purpose of the Study:

• To evaluate the frequency and nature of insurance application problems experienced by hypertrophic cardiomyopathy (HCM) mutation carriers.
• To identify associations between carrier characteristics and the occurrence of these insurance-related issues.
• To assess the implications of genetic testing results on insurance accessibility for HCM patients.

Main Methods:

• A cross-sectional survey was conducted among HCM mutation carriers.
• The study achieved a high response rate of 86% (228 out of 264 participants).
• Data analysis focused on insurance application experiences and correlations with disease manifestation and symptoms.

Main Results:

• Of 66 carriers who applied for insurance, 39 (59%) reported problems within 3 years post-DNA testing.
• Carriers with manifest disease or HCM symptoms encountered more insurance problems.
• Carriers identified via predictive DNA testing reported fewer issues, and only 5% of applicants without manifest HCM faced problems.

Conclusions:

• HCM mutation carriers frequently encounter insurance application difficulties, particularly those with diagnosed disease.
• While insurance risk assessments appear largely justified, a small percentage of carriers face potentially unwarranted issues.
• There is a need to monitor insurance companies' adherence to regulations and to educate individuals about genetic testing implications for insurance.