Testing times

Genetic science offers a brave new world of human improvement.
But if people with dementia in the family are penalised by
insurance companies the future will look less bright. Jonathan
Pearce reports.

The Royal Commission on Long-Term Care may have written off the
idea of private insurance policies as the solution to the funding
of long-term care, but the Treasury is still keen for insurers to
have the opportunity to develop the market, according to a
consultation it carried out earlier this year.

This is likely to involve regulation of the insurance industry,
which will in turn touch upon the thorny issue of genetic testing
in the selling of insurance products. The use of genetic tests in
assessing insurance premiums is cited as proof that the industry
cannot regulate itself.

Genetic testing legitimises discrimination against dementia
sufferers and their families, says the Alzheimer’s Disease Society
(ADS). Others fear the creation of a genetic underclass, which will
find it hard to access vital goods and services.

“The industry recognises the depth of public concern about
society’s use of genetic information and is keen to ensure that
discussion about the fundamental principles should take place
calmly and on a consensual basis,” says Mary Francis, director
general of the Association of British Insurers.

The ADS has many other issues with long-term care insurance, but
is convinced it must be regulated and agrees that greater
protection is required. In an attempt to head off criticism, the
Association of British Insurers has imposed a voluntary moratorium
on using genetic test results, but many have little faith in the
industry, especially given the criticisms from the House of Commons
science and technology committee in April this year.

“The insurance industry has failed to give clear and
straightforward information about its policy on the use of genetic
test results to the public, and appears to be uncertain itself
about what exactly its policy is,” says the committee report.

The committee also claims the insurers have failed to
demonstrate a need for genetic information and are more interested
in “their future right to use genetic results in assessing
premiums, than in whether or not they are reliable or

The Human Genetics Commission, set up in 1999 to advise
government on current and potential development in human genetics
and their likely impact on human health and health care, backs a
three-year moratorium on the use by insurers of genetic tests.

“On the basis of the evidence we have received we have profound
misgivings about the industry’s handling of this information and
its ability to keep its own house in order,” says HGC chairperson
Baroness Helena Kennedy QC.

The government has yet to respond officially to the HGC’s
recommendations. “The industry case is based on bad science,” says
ADS chief executive Harry Cayton. “They have continually made the
spurious claim that they will be commercially damaged if prevented
from using the results of genetic tests. This is untrue.”

According to the ADS, there is no way of determining absolutely
whether someone will develop dementia. There is no single gene for
Alzheimer’s and genetic factors are responsible for the disease in
only a small number of families (see box).

This did not stop the Association of British Insurers from
recently seeking approval for two tests for familial Alzheimer’s
disease from the Genetics and Insurance Committee – set up in 1999
by the government to approve the use of genetic tests.

The ADS is concerned that people’s fears about potential
discrimination may deter them from taking a genetic test that could
be of benefit in the early detection of the disease and in
therapeutic intervention.

As the Science and Technology Committee report concludes: “If
the choice has to be made between exposing insurance companies to a
small degree of short-term risk, and increasing the stigma and
discrimination many of these sufferers feel, then the choice for
government, and our society, is clear.”

Genetic faultline

Alzheimer’s runs in a small number of genetic families, where up
to half of the family members are at risk.

Early onset: About 15 families in the world have a genetic fault
on chromosome 21 in a gene called amyloid precursor protein (APP)
which affects production of a protein called amyloid. This protein
has been associated with Alzheimer’s when it builds up in the

A larger number of families carry a fault on chromosome 14
(presenilin-1) which could be responsible for most early onset
cases of familial Alzheimer’s, sometimes below the age of 40.

A smaller group of families (mainly in the United States) has a
fault on chromosome 1, which has been named presenilin-2.

Later onset: Most cases of Alzheimer’s develop later in life.
Below the age of 65 the risk is approximately one in 1,000. Over
the age of 65 it affects one person in 50.

There is also a genetic link with many later cases, weaker than
the link described above, but not confined to a few families. The
link is with a protein called apolipoprotein E (ApoE), which
everyone has in the blood and brain in three different forms
(ApoE2, 3 and 4) with differing levels of significance.

The ApoE risk is very different from familial Alzheimer’s. ApoE4
(present in about one-quarter of the population) increases the
chance of the disease, but does not make it certain. Some other
factor, not yet understood, must also contribute.

Source: Alzheimer’s Disease Society.

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