Obtaining insurance after DNA diagnostics: a survey among hypertrophic cardiomyopathy mutation carriers
European Journal of Human Genetics
Obtaining insurance after DNA diagnostics: a survey among hypertrophic cardiomyopathy mutation carriers
Tjitske M Kok
Irene M van Langen
Gouke J Bonsel
Arthur AM Wilde
Ellen MA Smets
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 (Po0.001) and carriers with symptoms of HCM (P?0.049). Carriers identified after predictive DNA testing less frequently experienced problems (P?0.002). 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. European Journal of Human Genetics (2010) 18, 251-253; doi:10.1038/ejhg.2009.145; published online 12 August 2009
hypertrophic cardiomyopathy; insurance; genetic testing
Hypertrophic cardiomyopathy (HCM) is a hereditary heart disease
affecting at least 1 in 500 persons worldwide.1,2 HCM is manifest when
a hypertrophied non-dilated left ventricle is present in the absence of
other cardiac or systemic diseases that may cause cardiac
hypertrophy.3,4 Patients with manifest HCM may remain asymptomatic, but
HCM can also give rise to dyspnea, exertional angina, palpitations,
and (pre)syncope. HCM patients have an increased risk of
cardiovascular death, including sudden cardiac death (SCD, 1% per year) with
excess mortality especially at young age.5 Relatives at risk can be
identified by predictive DNA testing. Mutation carriers may develop
HCM at any point in life and are therefore at increased risk for
disease-associated death. In HCM, death due to heart failure or stroke
is most likely related with the presence of manifest disease, that is, left
ventricular hypertrophy. SCD, however, is caused by ventricular
arrhythmias and it is not well determined whether mutation carriers
without manifest disease are at increased risk for SCD.
DNA testing, especially in a predictive setting, may have negative
social consequences, such as problems in obtaining access to
insurance.6?10 This especially holds for insurance of which the premium or
access is based on an individual risk assessment, like life and disability
insurances. In the Netherlands, individual risk assessment can take
into account current and past health, specific diseases that run in the
family, and risk behavior (eg, smoking and sport activities). Such risk
assessment is performed by insurance companies when an individual
applies for a life, disability, individual pension, or additional health
insurance. Basic (social) health insurance in the Netherlands is
obligatory and the standard fixed premium is based on the average
disease risk in the population.
Since 1990, Dutch insurance companies adhere to a moratorium on
the use of DNA tests and genetic information in the application for
specific insurances. In 1998, this moratorium was implemented by law
in the form of the Medical Examination Act (MEA) to protect
individuals who want to obtain a civil employment contract, a pension
or a life or disability insurance.11 This act states that at the
commencement or modification of an insurance below predefined sums
(oh160 000 for life insurance and oh32 000 for disability insurances
in the first year and oh22 000 in subsequent years) no questions may
be asked about untreatable hereditary diseases or about the results of
genetic tests for such diseases in the applicant and his/her relatives.
An untreatable disease is defined as a disease without possibilities to
treat, to prevent, or to inhibit its progression. Insurance companies are
legally obliged to disregard available genetic test results for insurances
below the predefined sums, except in case of manifest disease.
Applicants in turn are legally obliged to report any manifest disease.
As HCM is an untreatable hereditary disease according to the MEA
definition and problems in obtaining insurance have been previously
reported by individual HCM mutation carriers, we wanted to assess:
) how many HCM mutation carriers experience problems when
applying for an insurance, (
) what type of problems they encounter,
) which of these problems are most prevalent, and (
) whether problems
are related to sociodemographic or clinical characteristics of the applicant.
This cross-sectional study was performed in 2007?2008 at the cardiogenetics
outpatient clinic of the Academic Medical Centre, Amsterdam, The
Netherlands. All HCM mutation carriers counseled and tested for an autosomal
dominant single pathogenic mutation at our outpatient clinic were invited to
participate (n?264). Participants had received their DNA test result at least
eighteen months ago, had to master Dutch, and were at least 16 years of age.
The survey consisted of two questionnaires. Questionnaire I, part of a larger
study,12 asked mutation carriers whether they had applied for insurances since
their DNA test result and whether they had experienced any problems in this
regard. Respondents who reported problems were invited to complete
questionnaire II containing questions on the insurance sum, the nature of the
problems, and the final application result. Both questionnaires were
accompanied by an explanatory letter and a reply-paid envelope. After 2 weeks, all
counselees received a reminder.
The results of the questionnaires are presented using descriptive measures
(mean, SD). Univariate associations between carriers? sociodemographic and
clinical characteristics and presence of insurance problems were tested using
w2-tests, Fisher exact tests, and t-tests, as appropriate.
Of the 264 initial questionnaires, 228 (86%) were returned. Mean
(?SD) age of respondents was 49?15 years, 49% were men and 59%
had manifest HCM (Table 1). Since their DNA test result (mean
(?SD) time 3.3?1.4 years), 66 mutation carriers (29%) had applied
for one or more insurances of whom 39 (59%) reported problems. In
total, 88 applications were reported of whom 59 resulted in problems
(67%). Problems did not relate to the type of insurance (P?0.055,
No associations were found between sociodemographic
characteristics and experienced problems when applying for an insurance
(Table 1). However, problems were more frequently encountered by
applicants with manifest disease (left ventricular hypertrophy)
(Po0.001) and applicants with symptoms of HCM (P?0.049)
(Table 1). Problems were less frequently encountered by carriers
who had undergone DNA testing in a predictive setting (P?0.002).
Of the 39 mutation carriers who encountered problems, 26 (67%)
indicated that they wanted to receive questionnaire II and 21 (81%)
returned this questionnaire. Problems most frequently encountered by
these respondents were the requirements (
) to pay a higher premium
) to grant insurance companies access to cardiological
records (62%) or to the DNA test results (5%), and (
) of a medical
examination (19%). In 33%, the application was completely rejected.
Reasons for the extra requirements or rejection were (more than one
answer possible): manifest HCM (58%), carriership of a HCM
mutation (21%), the presence of another serious or chronic disease
(16%), the occurrence of DNA testing for HCM (11%), family history
(11%), lifestyle (11%), and an increased mortality risk (11%). Reasons
given for requirements were not significantly different from reasons
given for rejection. In total, 44% of the carriers experiencing problems
Table 2 Applications for insurance (n?88) by 66 HCM mutation
when applying for a life insurance and 33% of the carriers
experiencing problems when applying for disability insurance applied for
insurance below the predefined sums stated in the MEA.
According to the MEA, unjustified requirements can only be made
in mutation carriers without manifest HCM who apply for insurance
below the predefined sum. Three carriers without manifest disease
experienced problems applying for insurance. At least in one carrier
unjustified requirements were made and possibly in another carrier
(in the latter case the insurance sum was unknown); in total 1.5?3% of
Despite legal restrictions on the use of genetic test results in insurance
applications, HCM mutation carriers in the Netherlands frequently
encounter problems when applying for insurances. During the 3 years
of follow-up since disclosure of the DNA test result, a substantial part
of the mutation carriers (29%) applied for insurances and 59% of
them experienced problems. Most problems were reported by
mutation carriers with manifest disease, a group known to be at increased
risk of cardiovascular death. As the MEA requires applicants to report
manifest disease, insurance companies? risk assessment is judged to be
correct in most carriers.
In total, 33?44% of the respondents reporting problems applying
for a life and/or disability insurance applied for insurance below
the predefined sum of the MEA. Most of them had manifest disease
and they were therefore legally obliged to report their disease
irrespective of the insurance sum. However, problems were also reported
by three carriers without manifest disease (5% of applicants). This is
worrisome because there is no clear evidence for an increased
mortality risk in these individuals. In at least one of them (and
possibly in two) additional requirements were also unjustified
according to the MEA, as the insurance sum applied for was below the
predefined sums of questioning.
The insurance problems encountered by these three carriers without
manifest disease could be due to an incorrect risk assessment by the
insurance company. However, these problems may also result from
carriers having difficulties filling in the insurance companies? health
questionnaires. The line of questioning in these questionnaires is often
unclear, and genetic risks and family history are often addressed
regardless of the predefined sum. Although genetic counseling also
addresses insurance issues, particularly in case of predictive DNA
testing, it is unknown to what extent counselees are familiar enough
with the MEA and act accordingly when filling in insurance
companies? health questionnaires. The statement in questionnaires that
insurance coverage is lost when incorrect information is provided
may result in an over-response, although law does not require this.
Our data might underestimate the true frequency of additional
requirements for insurance, as not all mutation carriers may
experience a medical examination or access to medical records as a problem.
On the other hand, the experienced problems reported by our carriers
might not be classified as ?problems? from the perspective of the MEA.
Higher premiums can be expected in mutation carriers with manifest
disease and are in agreement with the law.
In summary, our data suggest that insurance companies? risk
assessment of HCM mutation carriers is most often correct (95%);
additional requirements and rejection mainly occur in carriers with
manifest disease who are known to be at an increased mortality risk.
Nevertheless, some individuals encountered potentially unjustified
problems (5%). Therefore, we propose that application of the existing
laws and regulations on the use of genetic information by insurance
companies should be monitored. Secondly, individuals who attend a
clinical genetics clinic for predictive DNA testing for untreatable
disorders should always be informed about existing laws and
regulations, and the possibility of insurance problems.
CONFLICT OF INTEREST
The authors declare no conflict of interest.
Clinical data of the HCM mutation carriers in this study are lodged in the
GENCOR database (http//:www.gencor.nl), a national database for familial
heart diseases, supported by the Interuniversity Cardiology Institute of the
Netherlands. This research is financially supported by ZorgOnderzoek
Nederland (ZonMw), grant number 62000010 and the Netherlands Heart
Foundation (NHS), grant number 2003 D302. The funding organisations have
had no involvement in study design, collection, analysis, and interpretation
of data; in the writing of this paper and in the decision to submit the paper
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