How useful is genetic testing to insurers, asks Katie Puckett.

“Genetic link to breast cancer found,” screamed the headlines after it was announced scientists had discovered two new genetic links to breast cancer – one increasing the risk, the other reducing it.

Exciting stuff, but not shocking. Ever since Crick and Watson discovered the structure of the DNA molecule in 1953, scientists have been trying to find genetic causes for everything from personality traits and sexual preferences, to conditions such as obesity and life-threatening diseases. They’ve also been searching for ways to predict them.

It is now possible to analyse DNA samples for genes linked to a range of illnesses. These can provide some indication of how likely a person is to, say, die of the same cancer as his or her mother or father, or contract a degenerative illness in early middle age.

For insurers whose business is about taking calculated risks on the probability of these things, such discoveries can hardly be ignored. But how useful are they? And does their potential outweigh the ethical concerns of effectively discriminating on the basis of genes?

In 1997, the ABI and government agreed a five-year moratorium on using the results of any predictive genetic tests for underwriting purposes for all but the most expensive policies. This has since been extended to 2014, although a review is planned for 2011.

Even if the moratorium were lifted, there is still little to indicate genetic testing would be of much use to insurers. Regardless of how quickly geneticists’ work has seized the public imagination, in reality their discoveries are slow to come and uncertain when they do.

According to the UK Genetic Testing Network, which advises the NHS, there are about 300 tests available on the NHS, ranging from relatively common conditions such as cystic fibrosis to those that affect only a handful of families. They’re more commonly used to confirm a diagnosis rather than predict a disease, though patients with all the symptoms of a condition may not have the gene or genes associated with it.

There are no UK-wide figures on how many people have had these tests because NHS services are commissioned locally, but the UK Genetic Testing Network (UKGTN) has begun to compile them. As for predictive genetic tests, only the one for Huntington’s disease, an inherited disorder of the central nervous system, is 100% accurate. People who have the faulty gene will go on to develop the disease at some point in their lives – though the test offers no clue as to when.

Health insurer Bupa says that about 4,800 people in the UK currently live with Huntington’s. The test for Huntington’s was approved by the Department of Health’s Genetics and Insurance Committee (GAIC) in 2000 for use by insurers, but results are only taken into account for policies worth more than the thresholds set by the moratorium.

These include life policies worth more than £500,000, critical illness cover over £300,000 and income protection insurances that would pay out more than £30,000. According to the ABI, only 3% of policies fall into this bracket; of these, only a tiny minority of policyholders will have been tested for Huntington’s. Insurers can request the result of a test but cannot demand that one be taken.

The consequences of a positive result vary. (Policy applicants may choose, of course, to share the result of a test with their insurer if they feel it will demonstrate a lower risk.)

As for other diseases, insurers can glean little more from a genetic test than they could from studying a family’s medical history. Predictive tests can identify only the presence of a certain gene, indicating someone is more or less likely to develop a condition at some point in their lives.

One of the strongest genetic connections found is for breast cancer. Women who have inherited a mutated version of the BRCA1 or BRCA2 gene are significantly more likely to develop the disease, although these mutations account for between only 5% and 10% of breast cancer cases.

Medical insurers see little prospect of using genetic testing as it stands, particularly as policies are annually renewable.

“Genetic tests are not accurate enough to predict in which year someone who is at a higher risk than the normal population of developing a particular disease is going to do so,” says Virginia Warren, Bupa’s assistant medical director. “For example, between 15% and 50% of women who have inherited one of the BRCA genes which increase their risk of breast cancer will never develop the disease, and live a normal life. So the idea that a test could actually predict when someone will develop the disease is fiction.”

Fergus Craig, AXA PPP’s commercial director, agrees. “At the moment, there are very few tests that would make a difference to insurance claims. The truth is we’re all going to get ill and die. All these tests do is tell you that you’re slightly more likely to get ill and die from X and slightly less likely to get ill and die from Y. Since we cover a vast array of illnesses, it doesn’t make much difference to our costs.”

But he adds: “If our customers start changing their behaviour to avoid illnesses, that’s great – I’m going to get fewer claims. If it prompts them to buy medical insurance because they’re more likely to get X, that’s a good thing too.”

With the insurance moratorium not up for review until 2011, you might think the issue had been cryogenically frozen. But some campaigners are pushing for legislation to ensure their protection in the future.

In 2006, a coalition of 46 organisations and individuals including human rights campaigners, unions, disability rights groups, scientists, charities and lawyers, submitted a joint statement of concern to the House of Commons calling for a law banning employers and insurers from discriminating on the grounds of genetic tests.

GeneWatch, the not-for-profit campaign group coordinating the action, continues to press for legislation.

“If families are considering whether or not to have a test, they would benefit from legislation that stops insurers having access,” says Helen Wallace, its executive director.

“At the moment, even though we have the moratorium, they face an uncertain future. If you have a test now, what’s going to happen to these tests later on? We would rather the government legislated to make the situation clear.”

She says taking the test is a difficult decision for women with a family history of breast cancer. “The only thing you can do is have a double mastectomy. They shouldn’t have to worry whether or not it’s going to affect their finances.”

Public opinion seems to back GeneWatch. Breakthrough, the breast cancer charity, has twice surveyed UK women on whether they feel genetic test results should be used to determine insurance premiums. In both 2005 and 2007, more than three-quarters of samples of several thousand women rejected the idea.

Breakthrough also found a significant lack of public understanding of the moratorium, with 57% of women believing insurers could already use this information.

Other groups that support patients taking tests aren’t convinced it would make any difference. The Genetic Interest Group, representing more than 130 charities which support people affected by genetic disorders, has been working with the insurance industry to standardise the way patients’ often complex medical history is communicated to underwriters.

Though communications manager Melissa Hillier has picked up concerns about the future use of genetics tests from member organisations, she doesn’t think legislation would improve the situation. “We’re quite happy with the moratorium and we don’t see any real reason to change that.”

For the moment, it looks like there’s little to worry about. As Fergus Craig, AXA PPP’s commercial director, says: “If there were a big step-change in what we know and tests could show that you’re definitely going to get X, then that might be a different ball game. But we seem to be some way away from that – if it ever happens.”