Improved access to life insurance after genetic diagnosis of familial hypercholesterolaemia: cross-sectional postal questionnaire study

• Published in: European journal of human genetics : EJHG Vol. 20; no. 7; pp. 722 - 728
• Main Authors: Huijgen, Roeland, Homsma, Sietske JM, Hutten, Barbara A, Kindt, Iris, Vissers, Maud N, Kastelein, John JP, van Rijckevorsel, Jan LA
• Format: Journal Article
• Language: English
• Published: Basingstoke Nature Publishing Group 01.07.2012
• Subjects: Adolescent; Adult; Biological and medical sciences; Cardiovascular disease; Cholesterol; Cross-Sectional Studies; Deoxyribonucleic acid; Diagnosis; Disorders of blood lipids. Hyperlipoproteinemia; DNA; Female; Fundamental and applied biological sciences. Psychology; General aspects. Genetic counseling; Genetic screening; Genetic testing; Genetic Testing - economics; Genetics; Genetics of eukaryotes. Biological and molecular evolution; Genome, Human; Guidelines as Topic; Health Services Accessibility - economics; Health Services Accessibility - statistics & numerical data; Humans; Hyperlipoproteinemia Type II - diagnosis; Hyperlipoproteinemia Type II - economics; Hyperlipoproteinemia Type II - genetics; Insurance applications; Insurance, Life - statistics & numerical data; Insurance, Life - utilization; Inventories; Life insurance; Lipoproteins; Logistic Models; Male; Medical genetics; Medical sciences; Metabolic diseases; Middle Aged; Molecular and cellular biology; Mortality; Mutation; Netherlands - epidemiology; Questionnaires; Regression analysis; Surveys and Questionnaires; Young Adult; Netherlands; United Kingdom > UK; Questionnaire; Accessibility; Toxicity; Metabolic diseases; Lipids; Hyperlipoproteinemia; Lipoprotein; hyperlipoproteinemia Type II; Cholesterol; Genetic disease; Genetic counseling; Hypercholesterolemia; Life insurance; genetic testing and adverse effects; genetic testing; familial hypercholesterolemia; Genetics; Diagnosis; Dyslipemia
• ISSN: 1018-4813; 1476-5438; 1476-5438
• DOI: 10.1038/ejhg.2012.5

A decade ago, in the initial stage of genetic testing for familial hypercholesterolaemia (FH) in The Netherlands, it was reported that such screening decreased access to affordable life insurance for mutation carriers. In 2003, in order to improve access to insurance for FH mutation carriers, insurers agreed to underwrite according to a set of guidelines. In this cross-sectional study, we assessed whether access to insurance has improved since the advent of these guidelines. We approached 2825 subjects that had participated in the genetic testing for FH between 1998 and 2003. We compared unconditional acceptance rates before and after FH diagnosis and before and after the guidelines were issued by means of logistic regression analysis. Our study outcome pertains to 414 FH patients who applied for life insurance. Unconditional acceptance of a policy before DNA diagnosis and before the issue of guidelines occurred in 182 out of 255 (71%) cases, versus 27 out of 35 (77%) cases after DNA diagnosis, but before the issue of guidelines. De facto, 107 out of 124 (86%) patients received unconditional acceptance after DNA diagnosis and after the issue of guidelines (P for trend=0.002). Access to life insurance improved for FH patients after molecular diagnosis and it improved even further after the guidelines were issued. Therefore, we argue that limited access to life insurance on the basis of 'DNA discrimination' is no longer a valid argument against genetic cascade testing for FH, at least not in our country.