Cheap genetic test: insurance policy or privacy risk?
NIB health insurance is offering its clients half price genetic testing. The catch is you may have to reveal the results of that test to the insurance companies. As if getting yourself tested for some disease wasn’t scary enough. But is having an insurance company know your test results all that bad? Yes and no – maybe. It depends on who you talk to.
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Science leads
The problem as far as I see it is that the science, or more precisely its application, has shot ahead of our ability to assess this from a legal and ethical perspective. In some cases the science has shot ahead of itself, making stupendous claims about what these tests can reveal about us, few of which are even remotely realistic. Do a web search for genetic testing companies and you too can hand over lots of money to reveal you genetic secrets.
Cheap insurance
Yesterday I had a call from a guy seeking information about a life threatening genetic condition that many of his family members had. His daughter suffered a serious and permanent complication from the disorder, simply because she was unaware she had the genetic condition. The gentleman that called me said his doctor refused to refer him for a genetic test because he had to show the condition ran in his family, which at that time he didn’t know because he was adopted. It was the diagnosis of his daughter that got him his test. Other family members have since been tested and some were found to carry the mutation. His point was that the disorder can be simply managed with minimal, if any complications to an individual’s lifestyle, if you know about it. So for him having the test was the cheapest insurance policy he could get and he had no issue revealing such information to insurance companies.
I would have thought also that an insurance company in possession of such information and aware that you are managing the risk would mean they are less likely to have to cough up serious money to cover medical and associated expenses. How this might affect your premium is another thing, and one of the key concerns. There have already been reports of genetic discrimination based on such tests (see below for references).
I am not my DNA
There are other big issues, of course, namely that we are not the sum of our DNA. The environment plays a large part and indeed can act to change the function of our genes by switching them on or off, a process referred to as epigenetics. So there is a limit to what we can understand by looking at our DNA alone.
There is no doubt having such knowledge about ourselves can be empowering for some and in the hands of the wrong people might be dangerous or problematic. So how do we deal with this? Keeping this information between yourself and your GP might be equally as dangerous for your other family members and the people you associate with such as your employer (would you want someone in the early stages of Huntington’s disease – a neurological condition – manning the control tower as your plane is coming in to land?).
At the moment our DNA tells us squat except for a few genes (about 1000 actually) that we know are associated with disease; some with definitive links, others with a somewhat looser association to a disease. Any other claims are largely guesswork or a con. But this will change, our knowledge that is, rather than the con artistry. So who should know and what should they know about our personal genetics? How should we regulate this, if at all?
Tis’ a brave new world.
Extra info
For information on genetic testing and the associated ethics, check out the Centre for Genetics Education
Genetic Future blog also has a take on this story
Keogh L. A. et al Is uptake of genetic testing for colorectal cancer influenced by knowledge of insurance implications? Med J Aust. 2009 Sep 7;191(5):255-8.
Barlow-Stewart K, et al.
Verification of consumers’ experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing.
Genet Med. 2009 March 11(3):193-201