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
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
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
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
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's Chorea, you have a 50 per cent chance of developing the
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
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
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
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
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's 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