Taking a gene test can restrict your access to health and life insurance, but how much depends on your insurer, reports Eloise Gibson
What starts as curiosity about how you’ll age, or whether you’re descended from Henry VIII, may end in an exclusion on your insurance policy.
A small survey by Newsroom found New Zealand insurers take different approaches to risks in people’s DNA, making the impact of genes on your insurance cover something of a lottery.
Insurers don’t ask people to take gene tests, but people can get them voluntarily through companies such as Easy DNA, which has an office in Auckland. Such direct-to-consumer services ask for a saliva swab and offer a range of results claiming to reveal the risk of dozens of diseases, as well as such information as whether someone is likely to be a night owl, respond to exercise, or be obese. Diseases purported to be probed by DNA tests include several types of cancer, Alzheimer’s, osteoporosis and several auto-immune diseases.
Other people take tests to explore their ancestry, but may also receive results pointing to genes linked with certain health issues or behaviour.
Some insurers and doctors say the science behind many of these services is dubious, but most insurers will still ask people to disclose the results when applying for life or health insurance.
At the same time, more rigorous tests are becoming available through the public health system to diagnose heightened risk of gene-linked diseases such as Coeliac disease or forms of breast cancer.
All insurers canvassed by Newsroom require people applying for new health and life policies to supply the results of genetic tests they’ve taken, except when applying for some quick-turnaround policies over the internet.
Insurers may use the results to set exclusions or raise premiums. Approaches vary: while some companies require the full results of any tests, including direct-to-consumer tests, others only want to see tests requested by a doctor for medical purposes.
The threshold at which your genes become an issue for your insurer is murky. When asked how certain the link between a gene and a health issue must be before it affects someone’s insurance prospects, companies offered variations of “we take it on a case-by-case basis”. In other words, the customer supplies the results and they decide if there’s a problem.
Otago University law professor Mark Henaghan, who led Otago’s Human Genome Research project, says a lack of clear guiding principles makes it tough for people to know in advance whether taking a gene test out of curiosity or concern will affect their insurance prospects. Access to insurance – especially life insurance – is important for young people, who might need it to get a mortgage or support a spouse if something happens to them when they have young children. Yet Henaghan says younger people may not be thinking about the insurance consequences when they are ordering gene tests.
While people love to debate the ethics of genetic advances like three-parent babies, Henaghan notes insurance consequences are likely to affect many more people, much sooner. “This is happening now,” he says.
If an insurer finds out you’ve had a test but not disclosed it, it could void the policy. There are no laws specifically governing how gene tests can be used in New Zealand, although insurers have a voluntary code saying they won’t ask people to take DNA tests. That means the tests only become an issue if you volunteer to take one.
While insurers could not put a figure on how high the health risk would need to be before they would take someone’s genes into account, we gleaned some guiding principles.
1. Insurers won’t require you to take a test – and if you want one, your policy may not pay for it
New Zealand has a voluntary insurance code covering genetic tests, which says insurers won’t require people to take them. All the insurers we spoke to abide by this.
If you want to take a test, there’s a good chance your health insurance won’t pay for it. In a mildly eye-popping case that made it to the insurance ombudsman, a man who was on holiday in New Zealand asked his travel insurer to pay for gene tests he had ordered for himself, his wife and his daughter. He and his wife were blood relatives, and he was concerned they may be carrying a genetic disease that would pass to their children. The man’s GP had recommended genetic testing. But the insurer declined to pay for the tests, saying the man didn’t have an illness and the healthcare cover under his policy didn’t cover preventative treatments. The ombudsman agreed the insurer was right to turn down his claim.
In two other cases that reached the ombudsman, women who took gene tests after getting insurance found out they had BRCA gene mutations (giving them 90 percent-plus risks of breast or ovarian cancer). Both women were denied cover for preventative surgery to remove their breasts or ovaries, on the basis they did not actually have cancer. But last year Stuff reported that Southern Cross had become the first insurer to offer cover for preventative treatments (like mastectomies) for people whose genes revealed a very high risk of disease. For the most part, though, your insurer isn’t liable if you want to take a gene test and act on it.
2. If you choose to take a test, you will probably be asked for the results.
Generally, insurers will ask for results of any tests you take voluntarily and there’s nothing to legally stop them putting up your premiums or excluding certain conditions from cover. There is variation between companies, though.
Here’s what four major insurers told us:
“Sovereign does not request that any customer undertakes a genetic test. However, if they do so of their own accord, we can request this information and assess the risk accordingly,” says Grant Hanafay, chief underwriter at Sovereign.
Southern Cross takes a similar view: “If they have undergone genetic tests for their own reasons we do ask prospective members to disclose any findings relating to genetic disorders during the application process for a new health insurance policy,” says the head of member services, Anthony McPhail. Southern Cross later confirmed that this meant disclosing the results of any gene tests where any “defect or abnormality” was found (not merely the obvious examples like BRCA) so the company could assess the significance.
Cigna, a life insurer that also offers a cancer cover policy, says it only considers medical tests – not the direct-to-consumer tests that people buy online. “Because the technology behind home gene kits is often not backed up by the same science and research that is used by specialist testing, we only rely on robust evidence from international medical research. This includes test results that were requested by a customer’s GP, registered medical specialists or that were performed by medical pathology laboratories,” says Cigna’s head of underwriting and claims, Joe Benbow.
The fourth insurer, NIB/Tower, says people can buy some health policies online without supplying any medical information, including gene tests. For all other policies, chief executive Rob Hennin says people should declare any tests they’ve had taken. NIB/Tower doesn’t specifically ask about gene tests when you apply for insurance, so it is up to people to remember to disclose their results voluntarily. Any risky genes will go into the mix with people’s general health and medical history to assess their risk, says Hennin.
3. Risky genes may be used to add exclusions to your policy, and sometimes to raise premiums.
The voluntary insurer’s code says companies can’t offer cheaper premiums to people with “good” genes. But “bad” genes can be used to raise premiums or set exclusions on a policy.
Most insurers say if they learned about a risky piece of DNA, they might exclude the disease from being covered by the policy. Cigna, for example, says on its website that someone with the risky BRCA variant (the one best-known for affecting Angelina Jolie) won’t be covered for breast cancer treatment. On the other hand, Cigna says wider lifestyle factors are still much more important to a person’s health than anything gene tests can reveal.
Southern Cross’s McPhail says if your DNA raises a red flag, “we would normally underwrite those genetic disorders, which would result in the exclusion of cover for treatment that is directly related to that specific disorder”.
NIB/Tower also says it may add exclusions to your policy but usually wouldn’t use genes to raise premiums.
However, Sovereign’s underwriter Hanafay says if you have a genetic marker showing a predisposition to a disease, they could either exclude the disease or raise the premium for covering it. On the positive side, if someone shows Sovereign a test proving they are clear of a risky gene, it could remove red flags that would otherwise be raised by their family history. “If the client does not have the genetic marker we would remove any loadings and/or exclusions in relation to the family history,” says Hanafay. “We will always adjust terms if more information, such as genetic test results, are presented.”
4. Just how risky a gene needs to be before it affects your insurance is murky.
A few genes – such as the much-publicised BRCA variation – carry well-quantified health risks, but many others come with smaller or uncertain risks, for example of obesity or immune problems. Sometimes apparent links between health and genetics are debunked when more research is done, or new links are found, making it hard to know in advance how tests ordered today may be viewed by insurers in the future.
If insurers have a threshold of scientific certainty for applying exclusions or premium hikes, they aren’t sharing it. When companies were asked how tests were being used, and how accurate they needed to be to affect someone’s insurance prospects, they usually answered with variations of, “people should tell us the results and we’ll see.”
“In regards to the risk level, there is no set percentage as each identified risk is assessed on a case-by-case basis, also taking into account the customer’s health status and medical history,” says NIB/Tower. But, says NIB, the gene variation would need to be a “known indicator of increased disease risk”.
5. Most insurers will give you reasons if your DNA changes the policy – so ask them.
Otago’s human genome project report recommended that insurers should offer people reasons when they were declined cover or charged higher premiums for genetic reasons, so people could begin to get an idea of how their DNA might be used. That might help dispel some of the worries about people taking gene tests, said the report. Insurers said they would supply detailed reasons if someone’s insurance was affected by their gene tests, so it’s well worth asking for a step-by-step explanation.