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Independent View

By 2015, scientists believe they will have mapped out the entire human

genome – the code for life. They have already come a long way in

identifying some of the genes responsible for serious illnesses such as

Huntington&#39s Chorea.

Many people are afraid humanity will know too much. But it is not the

knowledge itself which is dangerous, it
is the application of that

knowledge.

I have no problem with
scientific discovery per se. When it comes to

human genetics, I welcome advances which might lead to the ending of human

suffering for many individuals.

It is worth remembering this is an area which is still
in its

scientific infancy and
only a handful of genetic diseases can be

predicted with total certainty.

There has been a great deal of coverage in the media rec^_ently about the

use of gen^_etic tests by the insurance industry. The approach so far has

been measured and reasonable. Prov^_iders are bound by the ABI code of

practice. They cannot insist on someone taking a genetic test as a

condition of offering them insurance.

However, any existing gen^_etic test result must be given to an insurer

unless they state otherwise and as long as the application form asks the

relevant question.

In addition, only a handful of tests are taken into account and these can

sometimes help people to get insurance. For example, if one of your parents

has Huntington&#39s Chorea, you have a 50 per cent chance of developing the

disease.

If you have not been tested for the disease, it is unlikely that you will

get cover but, if you had been tested and that test was negative, you would

represent a fairly low risk to
an insurer.

Such cases present a very good argument for the use of genetic testing and

could spell the end of back-door cherry- picking methods such as family

history.

However, they are ext^_remely rare. They also highlight other problems

which genetic tests bring up, namely being told your fate.

Where the odds are 50/50, knowing one way or the other could be a relief.

But if the test revealed you had the disease, would you really want to

know?

The insurance industry is currently taking a passive stance to testing but

for how long will that continue?

When terms of reference and membership of the Genetics and Insurance

Committee were announced in April 1999, Public Health Minister Tessa Jowell

said: “The establishment of the GAIC is an important step towards ensuring

genetic test results are only used in assessing insurance premiums when it

is scientifically and actuarially appropriate.

“This is a welcome and significant development in the protection of

consumer interests.”

This does not sound like a passive stance to me and, as for the protection

of consumer interests, I suppose that dep^_ends on the consumer.

The ABI recently gave conflicting statements on the subject. Malcolm

Tarling said insurers had “no plans to ask anybody to have a genetic test

regardless of their family history” whereas Mary Francis admitted: “If

there is evidence that someone might develop a disease, however sad that

may be, we have to take that evidence into account.”

As more is discovered about genetic diseases, the more ^_likely it is that

the insurance industry&#39s goalposts will move on the issue.

Whether genetic testing becomes a prerequisite for obtaining protection

remains to be seen. Indeed, the cost of testing and counselling may make

the insurance industry reluctant to go down this road.

A more attractive option could be to set underwriting limits above which

tests are compulsory. With no talk of banning the use of genetic test

results by life insurance companies – as has been done in several US states

and in countries such as Austria, Holland and Norway – it is possible

that their use might be sanctioned one day.

What would be the effect of such a move on those of us in the front line

dealing with clients face to face?

The ethical issues surrounding genetic testing and insurance are complex.

There are many valid arguments for and against its use. If we want to

influence the outcome, we are going to have to get inv^_olved in the

debate.

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