My family carry a genetic timebomb called Christmas Disease. Whoever named this particular disease had a black sense of humour because it sounds like the best of diseases to have but the reality is brutal *1. Sufferers lack Factor 9 in their blood which is the lesser-known clotting agent sister, to the more commonly known Factor 8.
Having blood that doesn’t clot is a serious issue, if you cut yourself you can bleed to death and any kind of bruise is even worse as you will keep bleeding internally. My maternal grandfather did very well to live as long as he did, with the lack on medical knowledge when he was born. Needless to say, he didn’t fight in the Second World War.
The women in my family tree carry the genetic variance onto the next generation and the men suffer from it. So severe is its impact that my parents were given the option to abort when my gender was known.
As science advances, we are able to know more and more about our genetic make-up. In the round, this has to be positive, but care should be taken where finding something out could have negative impacts.
It is possible now to pay for very comprehensive genetic testing. The cost is falling, and it is starting to be sold as a desirable lifestyle expenditure. There is a reason though why doctors generally only recommend it if someone in the close family has a condition that is genetic. Finding out that you have a hereditary disease can be useful if there is something that you can do to reduce your own risk, but what if you can’t influence your chances?
In the case of certain genetic anomalies, you have a higher risk of certain cancers, finding this out might mean that you cannot make lifestyle changes but instead are left with a potentially very impactful conversation with your own children. Women testing for Christmas Disease in our family, then have to make a tough decision if they are carriers, about whether to start a family. Given the impact of Christmas Disease this is possibly sensible but how would you feel if your private genetic testing flagged something that caused your own daughters to have to make a similar decision?
It also has an impact on planning for life cover and other insurance such as income protection. The concept of any type of insurance is a simple one, we all take out insurance for various risk, pooling our risk and all paying in (in the hope we never need a payout). Insurers adjust our payment based on whether we represent a higher or lower than average risk of a payout.
With car insurance this might be, where you keep the car overnight, who drives it and what postcode you are in. With human insurance it is trickier as in-depth genetic knowledge about every human would allow insurers to refuse to cover some people. At the moment all insurers take a moral stance mostly not to ask for the results of genetic tests, so that they are insuring everyone blind but as this type of testing becomes more common, we might drift into a world of the insured and uninsurable.
The current position is as follows (with thanks to the excellent Cura who advise our clients in this area):
- Insurers are not allowed to ask about genetic testing unless its Huntington’s disease and life cover is over £500k, or £300k for critical illness cover.
- Insurers usually only care about blood related parents and siblings but, critical illness cover disclosure might go into broader family history.
- A client who has had genetic testing can volunteer a negative result and potentially get better terms.
- Whilst insurers cannot ask about genetic testing, with the above exception, most things will come up in the family history anyway. The family medical history Qs often include a question about ‘have you been advised to have any tests or screening in relation to family hereditary illnesses’.
This all suggests that, as we have always said, insure early and only seek out genetic testing if you are advised to. Certainly, don’t do it on a whim or gift it as a Christmas present to a relative (even if it is hard to think of what else to get them).
We wish all of our clients a Merry and Healthy Christmas and a prosperous New Year. We advise clients from our office in Hook, Hampshire and across the UK.
*1 It is actually named after the surname of the first patient to be identified as having a separate disease to the more common Haemophilia A. As well as being called Christmas disease it is also known as Haemophilia B and the Royal Disease as it affects many people in the Royal families of the UK, Germany, Russia and Spain (probably not helped by in-breeding).