An interview with Jane Tiller, myDNA’s legal consultant
What do you do?
I am a lawyer and qualified genetic counsellor. One of my roles is as an ethical, legal and social adviser in public health genomics at Monash University.
How did you get involved in the issue of genetic tests and life insurance in Australia?
I was investigating how genetic findings affect the elderly as part of a clinical trial for the Aspirin in Reducing Events in the Elderly (ASPREE). I discovered that issues about the implications that genetic tests can have on life insurance aren’t being addressed in Australia.
Some Australians are avoiding participating in research that involves genetic testing, and avoiding clinical testing that could save their life, because they’re worried about the implications it would have for their insurance.
If people aren’t getting tests that could help them to improve their health because they fear that it will affect their insurance, then something needs to change.
My team made a submission to a current Australian Parliamentary Inquiry into the life insurance industry, and this issue is now on the political agenda.
What are the current risks to life insurance for Australians who get a genetic test from myDNA?
Life insurance companies can ask applicants to tell them about any genetic test results known to an applicant, which does include tests from companies like myDNA. Insurance companies are mostly interested in genetic results that suggest you have a predisposition to diseases like cancer or Huntington’s disease. myDNA doesn’t test for genes like that, so there’s less risk that your results will affect your life insurance.
However, for example, the Nutrition Report tests for the LIPC gene, which affects your likelihood of having high cholesterol.
It doesn’t seem like insurance companies are currently taking these types of tests into account. However, the insurance industry’s use of this information isn’t closely regulated by the government, so it is difficult to predict what will happen in the future.
What are the current risks to health insurance for Australians who get a genetic test from myDNA?
Health insurance is specifically protected by legislation and so health insurers can’t use genetic test results to deny cover or increase premiums. So myDNA test results won’t affect any Australian’s access to health insurance.
Will the Australian government ban the use of genetic tests in life insurance decisions, like other countries have done?
That’s part of what I’m trying to do. The UK has a ban on using genetic tests in life insurance and Canada has just passed legislation for it, as well. Several other countries are also following suit, including most of Europe, but it is taking Australia a while to catch up.
Without the certainty that a genetic test won’t influence life insurance, some people who could benefit from genetics tests aren’t getting them. For example, people with genetic diseases running through their families, like cancer, might choose not to get tested. This will make it harder for them to know what their risk really is, so it means they’re missing out on information that could benefit their health or even save their life.
How should I weigh up the value of getting a genetic report, compared to the risk to my life insurance?
Most myDNA tests won’t have implications for life insurance. However, if you want to get life insurance and are concerned that it might be affected by your test results, it may be worth thinking about arranging life insurance cover before taking the test.
If I get a test after I’ve renewed my life insurance, am I protected, or do I need to declare it at the next renewal?
Once you have got your life insurance in place, you don’t need to update your insurer with genetic test information in future, as long as you keep paying your premiums and your level of cover stays the same. However, if you want to renegotiate your level of cover or change companies, you might be asked about genetic tests when making the application.
It seems unfair to be punished for being proactive about health. What’s your perspective?
Current regulations require that insurers consider the steps that people are taking to look after their health, like surveillance and preventative surgery, but they don’t always do this. It means that people who are interested in knowing about and managing potential health risks can be punished for this. It’s not a good situation, which is why I am working to change it.