Bad Risk By Birth

Sydney Morning Herald

Wednesday May 3, 2006

Peter Weekes

It's no longer the realm of science fiction - insurance companies are using genetic tests to decide who to cover. By Peter Weekes

April 25 not only marks the forging of our national consciousness on the Turkish shore in 1915, it also marks the day, in 2003, when the complete map of our genetic make-up was first published. Yet, while the doggedness of the Anzacs at Gallipoli is embedded in the nation's psyche, a recent survey found few Australians realise the impact genetic testing already has on our lives, such as higher insurance premiums.

The 1997 movie Gattaca tapped into fears of a future where our genes predetermine everything from our job to who we can marry. Such a story remains more fiction than science, but concerns are being raised that genetic testing could soon give rise to a new underclass, the genetically poor.

Although the science is still in its infancy, about 1000 genetic tests can be conducted to determine whether people are at risk of developing various cancers, hemochromatosis and neurological conditions such as early-onset Alzheimer's. The issue for consumers, insurers and governments is how these results are used.

Governments around the world are now grappling with the financial, social and ethical issues raised and are responding as they see fit.

In Britain, a moratorium prevents insurance companies from using any genetic test, except for Huntington's disease, to influence who they insure and what premiums are charged.

The United States has started down a different path. It allows the use of a person's genetics when assessing their premium for general health insurance and other risk-related products such as life- and income-protection policies (known as preferred underwriting).

Australian insurers are in no rush to use genetics for general health care. They say most tests are only predictive, that is, there's no guarantee the person will succumb to a disease and it would be almost impossible to calculate the chances of them developing a particular illness as the country's population is too small.

For this reason, health insurance is community risk-related, meaning that while pre-existing medical conditions are taken into account, an 80-year-old will pay no more than a 20-year-old. It is a different matter for life, disability and income insurance. These products can be offered without insurance companies having to make regular large payouts and are exempt from numerous anti-discrimination acts. This gives insurers the right to offer cover, price the likelihood of a person developing a disease into the cost, insert exclusions or refuse cover.

For example, a woman with a family history of breast cancer generally will not be refused insurance on that basis alone, but extra mortality loadings, of up to 150 per cent, can be imposed.

There is a greater chance, however, that she will be refused disability, critical-illness and income-protection insurance. Still, some companies are now excluding an illness a person is more likely to contract, while covering all other non-related conditions.

Geneticists, the Government, doctors and other players concede genetic testing is just another tool for discovering a person's family history, something insurers have been doing for about 200 years to determine the likelihood of a claim.

As life and disability insurance is a voluntary purchase, it is the buyer's responsibility to reveal all relevant information, including a full family history. The law states if you have had a gene test, the results must be disclosed in the application, but the insurer cannot ask a person to have a test. Failure to disclose what a reasonable person would consider relevant usually results in the policy becoming void. However, there is concern that too much emphasis is being placed on genetic tests.

Rosanna Capolingua, chairwoman of the Australian Medical Association's ethics and medico-legal committee, says genetic testing must be put in the perspective of current medical treatments, preventive measures and lifestyle issues.

"Your real risk depends on lifestyle and other issues, not just on your genetic probability for disease," she says. Some conditions, she says, can easily be kept at bay by simply changing lifestyle factors, such as diet.

According to the Australian Survey of Social Attitudes conducted in 2003, only 9 per cent of respondents thought insurers should be allowed to use genetic results to determine premiums, most of whom didn't know insurers already do. A total of 77 per cent said they either strongly or very strongly disagreed. In answer to another question only 10 per cent thought insurers used genetic information, 40 per cent thought they probably did, 25 per cent said probably not and 12 per cent said definitely not.

"Low trust appears to be an important factor in explaining the disagreement with testing: 76 per cent of respondents who disagree with insurance companies using tests have little or no confidence in financial institutions, broadly defined," says Dr Kristine Barlow-Stewart, director of the Centre of Genetics Education, who conducted the survey.

Margaret Otlowski, a law professor at University of Tasmania and deputy director of its Centre for Law and Genetics, is about to publish the results of an extensive study into how insurers are using genetic information. She did not want to pre-empt the release of the study's findings, but says "on the whole, the insurance industry has acted responsibly".

"There is no evidence of widescale problems in this area. I think what we will find is consumer perceptions and fear about this issue is different to reality when you look at the cases," she says, adding there have been virtually no legal actions.

"Clearly there will be cases where disclosure means they are not entitled to insurance, but at the same time it would be difficult to argue in an actuarial sense that that isn't a justifiable decision.

"What we are trying to tease out is where there is a lack of justification, either by complete refusal to insure or in terms of what insurance is offered. I would suggest even if a person is given insurance, if it is limited by exclusions in a manner which is unjustifiable, then that could amount to discrimination."

The Australian Law Reform Commission recently completed a two-year investigation into the ethical, legal and social implications of genetics, and in particular the use of genetic tests by insurers. The final report, Essentially Yours: The Protection of Human Genetic Information, made 144 recommendations, most of which were readily accepted by government and industry. It wants insurers to adopt a range of improved consumer-protection polices, ensure genetic information is only used in a scientifically and actuarially sound manner, provide reasons for decisions, strengthen complaint mechanisms and train its members about the issues.

The recently government-established Human Genetics Advisory Committee, one of the commission's proposals, will oversee the implementation of the other recommendations.

The president of the Australian Law Reform Commission, David Weisbrot, says the industry should be allowed to self-regulate and retain its exemptions from anti-discrimination laws on the condition it puts protections in place.

"That means in any cases where they have adversely rated someone, in other words exclusion or higher premiums, they have to give specific reasons defending why they did it," he says. "Those reasons must be testable, in the first case, by a low-cost industry tribunal that could say whether the decision was rational. If the consumer is not satisfied with that they can go to the equal opportunity commission."

APPLY FOR INSURANCE BEFORE A GENETIC TEST

About 6 million Australians have some form of risk-insurance cover, according to the latest fi gures published by the Australian Prudential Regulatory Authority.

Rosanna Capolingua, chairwoman of the Australian Medical Association?s ethics and medico-legal committees, says one of the worst possible outcomes of genetic testing

is if patients baulk at the idea of a test because of the fear of its possible financial consequences.

?So far, patients have been thinking about what is best for them and their health management,? Capolingua says. ?I would not like to see a resistance in us being able to do a genetic test. I want to be able to use genetic tests in the clinical context

for the best outcome for the individual without them feeling penalised for having chosen a path that gives us a result.

?That is the risk we have to face. We have to manage this issue well so that people can go ahead and get the best health care possible.?

Margaret Otlowski, chief investigator at the University of Tasmania?s Genetic Discrimination Project, says people who want to have a genetic test but are afraid it will harm their chances of getting reasonably priced insurance, should consider taking

out a policy beforehand. That way you are under no legal obligation to divulge the results to the insurer. Another question often asked by insurers is if the applicant has previously been knocked back. This can be overcome by sending out multiple

applications. This does not cost a cent and means, as you haven?t yet been knocked back, you can tell the truth on the application.

FISCALFACT

When scientists first published the draft human genome in 2000 it was estimated the human body contained between 30,000 and 40,000 genes. Since then, with more research, that estimate has been reduced to between 20,000 and 25,000.

© 2006 Sydney Morning Herald

Back to News Index | Back to Home