Genetic Future

A reader pointed me to this article in the Australian news: it appears that a major Australian insurance company, NIB, is planning to offer half-price genome scans from personal genomics company Navigenics to 5,000 of its customers. 

The catch is in the fine print: those who take up the offer “may have to give the information to life insurance or superannuation providers”, according to the article. In a letter to customers, the chief executive of the company explicitly says that this information could be used to alter the premiums people pay for their life insurance:

The chief executive of NIB, Mark Fitzgibbon, said in the letter to customers that he had used genetic testing himself as a way of preparing for possible health problems in the future.

He says while life insurance premiums might go up for some people, others might enjoy lower premiums if they discover they are at a low risk.

“All this is doing is giving them [life insurance companies] better information about the health profile of people,” Mr Fitzgibbon said.

“For everyone who might have to pay more because of their genetic predisposition there will be people who will have to pay less.”

You can expect to see some reflexive outrage following this announcement; people have a visceral dislike of the notion of insurance companies using genetic information to make decisions about policy. Indeed, this dislike has been enshrined in law in the US via GINA , which prohibits the use of genetic information by health insurance providers and employers (although it’s worth noting that the law doesn’t apply to life, disability or long-term care insurance policies). Australia has no such law.
But is the idea of an insurance provider using genetic data really worthy of such instinctive distaste? Is there anything more fundamentally outrageous about using genetic data to calculate premiums than other inborn traits – such as, for instance, sex?
It’s worth bearing in mind that banning insurance companies from using genetic data undermines the entire premise that insurance is based on, by giving customers access to more accurate predictions of their future health than insurance companies. As genetic data begin to offer more and more useful health predictions, this will allow customers to purchase higher coverage if they find they are at higher risk. If insurance companies are banned from using the same information to calculate premiums the entire system will eventually collapse.
Is this collapse a bad thing? Probably less so in Australia than in the US, given that Australia has a (reasonably) functional public health system; so it’s ironic that the US has created anti-genetic discrimination laws for insurance companies while Australia continues to sit on the fence.
I’m personally pretty ambiguous about the need for bans on the use of genetic information by insurance companies, and tend towards opposing them. However, I do accept that there is a genuine danger that insurance companies will weight genetic information more highly in their premium calculations than is warranted, thus unfairly discriminating against potential customers. Especially in these early days, it is crucial that companies get the science right when they perform these calculations.
Another intriguing question is whether a Navigenics genome scan will actually produce information of any real value to insurance companies. I’m pretty dubious in general terms – Navigenics, like most other personal genomics companies, looks at common variants of individually small effects with overall weak predictive power for disease risk – but there will be some diseases where the test proves somewhat useful for a small fraction of individuals. 
It’s only as we start to move into the next stage of complex disease genetics – finding and testing for much rarer, larger-effect risk variants with much stronger predictive power for individual health – that this argument will really start to bite.
Finally, I expect one unambiguously positive outcome from this: the controversy resulting from this move may well force the Australian government to finally take a position on the use of genetic information by insurers, something they have shamefully dodged so far.
HT for the link: thanks Sari!

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Comments

  1. #1 Keith Grimaldi
    February 15, 2010

    I share your doubts about the information being very useful…at present. Also the danger of taking too much interest in the genetic information alone, after all, the aim of the navi et al services are to inform you of your higher risks so that you do something about them. What’s the point of doing them otherwise? So maybe insurance premiums should be lower if you do the test, whatever the results – a bit like an advanced driving qualification will reduce car insurance. Agree yet again about the dangers of asymmetrical use of genetic data, if only the customer ever has access, as you say, the whole insurance business is at risk. It reminds me of an article the Paul Nurse wrote a few years ago, he was arguing that genetic information will indeed lead to the collapse of private insurance, leaving social healthcare as the only option. I think he had a bias though…i need to find the article.

    One other thing, not sure how good this is for Navigenics – how much does health insurance cost per year? A lot. To save a few hundred $ it doesn’t seem worth letting the insurance company get away with their small print, at least until there is clarity and transparency about how the information will be used.

  2. #2 matushiq
    February 16, 2010

    What is policy in the case the insurance company pay genetic testing for the patient?
    Has the company automatically access to the results? And what kind of? Where is guarantee not sell it to third parties?
    I think it is broad problem & the earlier general public discussion appear, the better.

  3. #3 Misha
    February 16, 2010

    Insurers will exploit my data over my cold, restless legs.

  4. #4 Dim
    February 17, 2010

    In the UK we could use genetic data such as this (provided the system is secure and ethical) to improve future patient care and have better budgeting predictions for the NHS. This could ensure that future tax payers money is used cost effectively rather than costing them more money in insurance premiums.

  5. #5 Guillaume
    March 5, 2010

    Hi Daniel,

    A (long) late comment on your post.

    Let’s state the obvious: The National/Private Health Insurance models as we know it (whatever the country) will be outdated as soon as PGx predictions become efficient.

    PGx is already efficient for known monogenic diseases (see your Counsyl post summarising in a simple business 20 years of Clinical Molecular Genetics). Then look at what actions are taken by insurance companies towards those diseases: they pay only if they are obliged (ie, if you have subscribed before the diagnosis and if you are not outlawed by fine prints). It is impossible to take cover for yourself post diagnosis. It is evident that PGx will allow the diagnosis of any highly genetic (and penetrant) disease before (or at) birth. Hence, in the soon future, any NHS system will have to cover the penetrant diseases (rare or common) you are the most at risk. Private insurance for any highly predictable disease will disappear. It won’t be a sustainable business anymore. Which insurance company will take the risks for something with very high odds? Premium will be so high, no one will be able to pay.

    It seems that Paul Nurse predicted the same change from what I read in a comment above. But private health insurance will not disappear in my view (at least until we have preventive therapeutics for every disease that exists).

    People will be offered private health insurance for the predictable diseases (oligogenic or common) we are the least at risk (because then it becomes a lottery and, as we know, it is good business because the insurance companies will always be the average winner while the few unlucky patients needing the insurance will benefit from the cover).

    We will evidently also be offered to cover for yet unexplained genetic diseases or highly environment dependent (non genetic) diseases (being common or rare).

    We will also be offered insurance for all the common diseases (common to be defined) for which PGx will be found inefficient, ie all the common diseases that are genetic but still depend of the environment (cancer, obesity, diabetes,…).

    Will PGx be clinically inefficient for a few or the majority of complex diseases? I am kind of sweet and sour on this point. Today, no one can predict any complex disease in a clinical useful way. So, let’s hope in the whole genome sequence and the rare variant hypothesis or even hope for another yet unknown hypothesis. But, as feared, PGx could in the end reveals itself everything (and there is a lot in this everything) but a useful complex diseases predictive tool (for which all its business potential was thought for).

    In conclusion, no need to talk about old insurance models – companies will do all what they can to protect their business model and refuse to adapt (look at major music companies and online music). Let’s more think (like Dim’s post here above) about the most adapted National Health insurance/private insurance model post PGx Gartner productive plateau. There are great things to achieve for the good of the people. Political Think Thanks/NHS do you listen?

    BTW, felicitations for your own genetic future in making. Cheers.G.

  6. #6 peter
    November 12, 2010

    This is a touchy subject for sure. I think most people that get upset about this might be those that do not take very good care of their health.

    But it seems to me that this really isn’t the issue as the data they are using has more to do with genetic make up.

    But there have also been studies that say you can change you genetic makeup with your diet and general way of life. Maybe that’s not true. I don’t know; I’ve heard both arguments. Either way, fat Americans everywhere are likely to reject this idea. I think all of us fat people want to believe that our being in poor health is someone else fault. Keeps the responsibility off of ourselves. The insurance companies are just saying “its not our fault your health is poor”, so why should they take the fall for it.

    I don’t know, I’m glad I don’t have to make these kinds of decisions.