July 12, 2002	Friday	Jamadi-ul-Awwal 1, 1423

BASEL (Switzerland): 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 long before you even start to feel sick.

Now imagine being turned down or paying exorbitant sums 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 deepening understanding of the human gene pool moves out of laboratories and into everyday life.

Trumpeted by health care 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 weaklings and poses ethical questions about whether they alone or society in general should bear their higher health costs.

“Genetic testing will bring — and is perhaps one of the major ways we can bring — more effective health care to the societies we serve,” Jonathan Knowles, global head of research for Switzerland’s Roche Holding AG, told a recent symposium.

SEARCH FOR LINKS: The world’s biggest diagnostics firm and its DeCODE genetics partner have pored over Iceland’s relatively isolated genetic pool to come up with links to 13 diseases such as schizophrenia, Alzheimer’s, diabetes and stroke.

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 colour of your hair and eyes to the risk that you will contract cancer or 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 how to identify genetic risks and test for them.

The question now is what this will mean for patients, employers, insurers, government health schemes 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 their 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.”

GREY ZONE: The problem is the growing grey 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.”

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.

But McCall-Smith wondered how regulation at the national level could have any impact when firms offering over-the-counter genetic tests for dietary advice or to determine paternity can simply post their services on the Internet.—Reuters