APPENDIX 23
Memorandum submitted by the Huntington's
Disease Association
BACKGROUND INFORMATION
Huntington's Disease is a degenerative neurological
disorder causing severe physical incapacity, personality changes
and dementia. It is hereditary with each child of an affected
parent at 50 per cent risk of inheriting the disease. It affects
both males and females with onset of the disease occurring most
commonly between the ages of 35 and 45. There is no cure and only
limited palliative treatment for this devastating disease which
progresses over a period of ten to 25 years.
Genetic testing, initially through linkage analysis
and since 1993 through a direct gene test, will indicate whether
a person has inherited the faulty gene. However, the number of
people taking such tests remains a small proportion of those at
risk (approximately 15 per cent). Most people would rather live
with their 50 per cent risk than know with certainty whether they
have inherited the gene. This scenario is only likely to change
if effective treatment became available.
1. What do you feel to be the main benefits
and disadvantages of insurance companies using genetic test results
in assessing policies?
People with a known risk of genetic disease
have been placed at a disadvantage for many, many years as their
family history is taken into account when assessing premiums.
With Huntington's Disease people most commonly are offered life
insurance with a 300 per cent loading (three times a standard
premium). Therefore many people are unable to afford to take out
such policies. The situation with other insurance products such
as Critical Illness, Long Term Care and Income Protection is even
more difficult with people rarely being offered terms.
People are advised by geneticists/genetics counsellors
to obtain insurance before they have a genetic test on the grounds
that if they have a positive (abnormal result) they will be unable
to obtain insurance at all.
People with a negative (normal result) are currently
able to use this information to obtain insurance at standard rates.
The Insurance Industry is currently intimating that if they are
unable to use genetic test results they will treat people with
a family history of Huntington's Disease who have not inherited
the faulty gene as if they hadn't had the test. This would surely
lead to people not revealing the family history because they will
be confident that will not die from Huntington's Disease.
There has been experience of insurance companies
being forbidden to use the results of genetic tests (in the Netherlands).
As a result the insurance companies took such a harsh view of
family history that people at risk of Huntington's Disease where
unable to obtain life insurance at all. This situation has been
resolved by legislation whereby people are able to obtain life
insurance up to the value of 150,000 Euros without disclosing
either a family history or genetic tests results. Perhaps a similar
system could be introduced in the United Kingdom.
Life insurance is an important and desirable
protection enabling people to protect their families. However,
it is of great concern to families that should it ever become
necessary for them to have health, income protection or long term
care insurance as the result of a change in government policy
they would be denied the protection that should be the right of
all citizens in a civilised society. With the current state of
the NHS and the difficulties faced by people in the pursuit of
decent long-term care, families are already denied a choice as
a result of their genetic inheritance.
2. How effective do you feel the current
regulatory system is?
At present most regulation relates to the ABI's
voluntary code of practice. It is important that, should legislation
be proposed, it should not result in disadvantaging people further,
for example by forbidding the use of negative test results or
by allowing the Insurance Industry to load premiums even more
heavily or refuse terms on the basis of family history.
3. Do you feel that the use of genetic test
results could have an effect on medical research and progress
in your area?
Some members of our Association have expressed
the view that they do not want to take a genetic test or even
make an appointment with a genetics centre because such information
will appear on their medical records.
It is possible that people are discouraged from
taking part in research projects because they are concerned that
their "at risk" status will become known to interested
parties such as insurers or employers. People who already have
developed the disease might be discouraged from taking part because
it might reveal to third parties the "at risk" status
of their children or other family members.
February 2001
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