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By Michael Shields
BASEL (Reuters) - Try to imagine a world in
which you plan your health the way you now plan your finances, a truly
cradle-to-grave approach that detects and counters the risk of disease.
Now imagine paying huge sums or being
turned down for life insurance and health coverage by companies that
deem you too high a risk--even though you feel fit as a fiddle.
Those are the opposing visions of genetic
testing that are gradually emerging as the technology spawned by a
deepening understanding of the human gene pool moves out of the
laboratory and into everyday life.
Trumpeted by healthcare companies as a
breakthrough for treating and curing disease, genetic testing also poses
tricky questions about the privacy of medical data and people's right to
know--or not know--the risks their genes may hold.
Progress in genetic research is not yet
creating superhumans, but genetic testing will allow early detection of
potential health weaknesses and may pose ethical questions about whether
they alone or society in general should bear the higher costs.
"Genetic testing will bring--and perhaps is
one of the major ways we can bring--more effective healthcare to the
societies we serve," Jonathan Knowles, global head of research for
Switzerland's Roche Holding AG, said at a recent symposium.
SEARCH FOR LINKS
The world's biggest diagnostics company and
its DeCODE genetics partner have scrutinized Iceland's relatively
isolated genetic pool to come up with links to 13 diseases such as
schizophrenia, Alzheimer's, diabetes and stroke.
Great Britain is building a biological
database of half a million people to map which genes may lead to which
illness. And laboratories around the world are working on diagnostic
tests, hundreds of which are now available to detect risk of disease.
The focus is on the likely health impact of
tiny variations in genetic structure--the inherited blueprint of life
that dictates everything from the color of your hair and eyes to the
risk of getting cancer or suffering depression.
Scientists are still investigating the
complex interplay between genetic mutations and environmental factors
like smoking and high blood pressure in triggering common diseases, but
awareness is growing of ways to identify genetic risks and test for
them.
The question now is what this will mean for
patients, employers, insurers, government health plans and others who
confront the practical implications such knowledge brings.
Alex Mauron, a bio-ethicist at the
University of Geneva, said advances in testing are highlighting the
issue of patients' rights to control information about their bodies that
cost-conscious employers or insurance companies might love to have.
But he distinguished between the legitimate
differentiation insurers make when assigning risk to individuals based
on their medical profiles and the kind of social fairness that ends when
people are denied benefits that should be equally available.
"You can have a lucky draw or an unlucky
draw and there is no fairness in that," Mauron said. "If there is to be
any fairness at all, then it is only at the level of social arrangements
that choose which of these lucky or unlucky draws it has to compensate
and which ones it decides to leave alone."
GRAY ZONE
The problem is the growing gray zone
between the two.
Private life insurance is not a universal
right. But what happens when you need life insurance to get a mortgage
on your home or business, or when equal access to health coverage and
pension plans is jeopardized?
"We are at the beginnings of possible
abuses," said Alexander McCall-Smith, vice chairman of Britain's Human
Genetic Commission, which last month proposed steps to safeguard the
privacy of someone's DNA but still encourage medical research. "This is
the point at which we should counter that."
Already some employers and insurers are
misinterpreting genetic data to weed out staff members or potential
customers whose risk of medical problems is deemed too high, he said.
"It is undeniably the case that there are
people who would be very prepared to use this information to draw
conclusions which may not be justified, to give it a predictive value it
does not merit and, therefore, I think it is necessary for society to
respond to prevent that happening," McCall-Smith stated.
In Germany, for instance, the trend is for
insurers to ask would-be policyholders to provide results of genetic
tests, noted Ekkehardt Jecht, a physician and patients' advocate.
"You have to pay more if you cannot give
them a genetic test you have done previously," he said.
Other countries like Britain have a
moratorium on the use of genetic testing by insurers, who see the
technology as a way to glean more precise insights in clients' health
prospects.
HARD TO REGULATE
But McCall-Smith wondered how regulation at
the national level could have any impact when companies offering
over-the-counter genetic tests for dietary advice or to determine
paternity can simply post their services on the Internet.
On the other hand, why should results of
genetic testing be treated any differently than other medical risk
factors? After all, people buying insurance give details about
themselves and their family medical history without a second thought.
Insurers' treatment of genetic testing
varies widely from country to country, said Jan von Overbeck, chief
medical officer at Swiss Re, the world's second-biggest reinsurance
company.
It is generally accepted that
discrimination is barred in cases where everyone has to have obligatory
health insurance.
"But when it comes to a product like life
insurance, where you decide whether you want it or not, you have to have
an open business way of doing it. At present, it is no big deal for the
insurance sector, but it will be if the tests become much more
predictive," he said.
A reliable genetic test for longevity, for
instance, could sway people with a short life expectancy into buying
life insurance and those with a longer life span to buy an annuity.
"If you want to still have a private market
for life insurance you cannot allow that because the response of
industry would be either to increase the premiums for everyone to cover
this additional risk or you have access to the tests, at least to the
tests which are significant," he noted.
This would skew the basic principle of
insurance that people with the same basic risk get cover to pool their
exposure.
"We insurers should have the same
information (on genetic tests) as the client. If he has none, we don't
see the point in having it. If he has it, we should know. That is the
basic story," von Overbeck said.
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