THE spectre of the genetic underclass raised its head again last week in
Britain. A government committee announced that two genetic tests for
Huntington鈥檚 disease can reliably predict whether someone will develop the fatal
brain disorder. Insurance companies now have carte blanche to ask people who鈥檝e
had these tests what the result was. That means they can change people鈥檚
premiums accordingly鈥攐r deny them insurance altogether.
Groups opposed to gene testing warn that people with 鈥渄isease genes鈥� will be
consigned to a social limbo鈥攄enied of opportunities that most people take
for granted. Insurance companies say nothing鈥檚 changed: they鈥檝e been using the
test for years and last week鈥檚 announcement merely puts things on a formal
footing. Both statements are true. But they both miss the point鈥攖he
genetic underclass is already with us.
British insurers already ask people about their family histories. For many
conditions鈥攊ncluding Huntington鈥檚鈥攖his is just a less accurate form
of genetic testing. Companies use this information to raise insurance premiums
for about 5 per cent of the population and turn down 1 per cent. Here is the
underclass, even before genetic testing really takes off.
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So what will happen when it does? Let鈥檚 start with Huntington鈥檚. If a person
inherits the gene from either parent, they will develop the disease around the
age of 40. If a person has the gene, their children have a 50 per cent chance of
inheriting it.
For insurers, odds like these are easy to work with. People from families
with Huntington鈥檚 are a bad risk even if they haven鈥檛 been tested鈥攈alf of
them will develop the disease鈥攕o all their premiums are loaded. If an
adult family member takes the test and has the gene, insurers will probably turn
them down flat. But if they don鈥檛 have the gene, their premiums should drop to
鈥渘ormal鈥� levels. If bleak, this is all straightforward. But in future the
calculations are going to get very messy.
Think about diseases that develop not from a single gene, but from a
combination of genes, heart disease for example. Then consider how many
disorders are triggered by environmental factors, such as diet or viruses. How
do these things affect the risk calculation? What if a woman at risk from
inherited breast cancer takes the drastic action of having a double mastectomy.
Does her premium fall? And will people see their payments decrease if they carry
a gene associated with long life?
If we continue down this path of personalised premiums, insurance companies
are going to need supercomputers, people will think twice before having genetic
tests that may be medically important and the genetic underclass is almost
certain to grow. But there is another way.
Where most Britons rely on the National Health Service, Americans take out
health insurance. Most people buy in through group insurance, often paid for by
their employers. Four years ago, Congress ruled that group insurers could not
exclude people because of past or present medical problems鈥攊ncluding
genetic information. Neither can they charge one person more than any other
member of their group. Measures now being drawn up for Congress will prevent
insurers using any family history in their calculations and extend the law to
cover people who take out individual health insurance.
This attitude was born from the notion that healthcare, like bread and water,
are necessities of life, so people should not be discriminated against because
of their genes. So strong is the feeling in the US that both Democrats and
Republicans now back the eradication of genetic discrimination. For insurers,
this means having to balance their books by pooling risks across each group.
Premiums may be higher for everyone, but when it comes to healthcare, everyone
is treated equally. A good socialist attitude from the arch capitalists.
Because of the NHS, the debate over insurance in Britain has centred on life
insurance rather than health insurance. But that begs the question of whether
life insurance is a necessity too. One argument says no: it is just a bet on
when you will die. But in practice it is much more than that, because most
people cannot buy a home without it. So is buying a house or flat a right or a
privilege? Should some level of insurance be guaranteed for all?
The British government鈥檚 Human Genetics Commission is due to address these
questions later this year. Which way should it go? One option is a road of
increasing complexity in which more and more people find their premiums
rising鈥攐r that they can鈥檛 obtain insurance. The other is a system that
gets rid of the underclass at a stroke but costs a little more for everyone.
People with genetic disorders have enough of a burden to shoulder without being
denied the right to buy a home and give their families some security.
