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The gene machine

The general public have a complicated relationship with genetic science.

On the one hand, it is believed to herald a new generation of children

without health problems and smart cures for existing health problems while

its darker side brings fears of mutant clones and Big Brother medical tests.

For the present, the widely reported advances in genetic testing,

including the human genome project, are not likely to have a great effect

on the majority of the population, either in relation to their healthcare

or the insurance products they are offered.

But a climate of confusion and fear has grown and the ABI has been

pressurised by the Government and the Human Genetics Commission, the

genetics watchdog, to ann-ounce a three-year moratorium on the use of

genetic tests by the insurance industry.

The ABI code prohibits insurers asking customers to take genetic tests.

Before the moratorium, insurers could ask to see the results of tests

already taken for Huntington&#39s disease, Alzheimer&#39s disease, certain forms

of breast and ovarian cancer and a few other less well known diseases. The

moratorium means no genetic tests may be used for any policy under

£300,000 in value, and only the test for Huntington&#39s disease may be

used for policies over that figure.

The HGC wanted an upper limit of £500,000 but the ABI says the

present moratorium covers 98 per cent of policies and will avoid who learn

of inherited diseases taking out unusually big policies.

The Government is keen to avoid a repeat of the climate of fear and

confusion that grew around the issue of HIV testing in the 1980s and early

1990s. When the moratorium comes to an end, whatever regulation that

follows it will have to balance on the one hand the risk of people avoiding

testing because of a perceived fear of “blackening” their insurance rating

while, on the other hand, deal with the insurance industry&#39s legitimate

fears of people taking out higher levels of cover if they learn of their

own increased risk.

Massow Rainbow Group IFA Joe Swanson says: “There is no longer such a

strong requirement for people to buy life cover so we have to persuade

people that life and critical-illness cover is a good idea. We have to take

people through the underwriting process, which can be humiliating enough as

it is. Anything that allays people&#39s fears is a help. We welcome the


The relatively low number of people for whom genetic testing makes a

difference means the insurance industry is not set to lose money by

agreeing to the moratorium. At present, around 95 per cent of insurance

business is written on a standard basis, with 4 per cent paying higher

premiums and 1 per cent being rejected.

But with Health Secretary Alan Milburn announcing a £30m investment

to offer a free genetic screening programme to identify women with an

inherited risk of breast cancer, the insurance industry is aware the issue

many become commercially significant in the future and is keen to establish

ground rules at an early stage.

ABI deputy director general Stephen Sklaroff says: “The point of principle

under discussion is the basis for an insurance contract. The basis for any

contract is the quality of knowledge relating to it that the two parties


“In many ways, genetic information is no different to other forms of

information insurers ask for, such as height, weight and family health


Even for the limited number of conditions that insurers have been looking

to use, the tests are by no means conclusive. Only the test for

Huntington&#39s disease has been approved by the Genetics and Insurance Committee, the body set up by the Government to review genetic tests and judge on wh

ether they were scientifically reliable enough for insurance purposes.

The GAIC standard requires tests to be “actuarially significant”, with a

50 per cent likelihood of the disease being passed. Evidence of people

being deterred from taking tests is sketchy as genetic testing is

relatively new but anecdotal evidence shows some people whose parents have

had Huntington&#39s disease have shied away from taking a test.

The test for Alzheimer&#39s is only of limited value as it has not passed the

GAIC standard and, in any event, only relates to Familial Early Outset

Alzheimer&#39s disease, which accounts for only 1 per cent of all Alzheimer&#39s

cases, which exemplifies the present state of the clinical value of the

tests available.

In any event, many of the tests will only ever give evidence of a

predisposition to developing a condition and other factors, such as

lifestyle, stress levels and diet will still play an important part in

deciding people&#39s likelihood of developing illnesses.

The industry hopes selling life, critical-illness and healthcare products

will now be more straightforward since the adoption of the moratorium. The

moratorium is designed to take the heat out of the debate at a time when

the public are wary of genetics.

People have always been wary of new technology, and the ABI hopes changes

in public awareness will mean the benefits of genetic testing will increase

the spread of insurance through society. Sklaroff says: “The more we can

price products accurately the easier it is to spread insurance through the

population. As medical science has advanced, insurance has made greater and

greater inroads into society.”


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