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Testing and insurance

November 26, 2012

Huntington's Disease Youth Organization

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Testing and insurance

Q. I’m turning 18 soon and am contemplating testing. My dad is going through problems with life policies, insurance etc so I was wondering.. If I DONT get tested, would the problems arise be smaller than those if I DID get tested, in terms of policies insurance, driving license and the like. Basically, is it better for me to put down on forms that I may have it or do have it, if there’s no difference then I may as well be tested right? (Barring all other factors of course)

Thank you

Kiran, 17, London.

A. Hi Kiran

Thanks for your email. Insurance is a complicated matter for people living at risk of Huntingtons Disease. In the UK you have to declare Huntingtons if you have been diagnosed gene positive for insurance and driving licence applications. If you are at risk and not tested then you only need to declare if you are asked about hereditary conditions on the applications. You can find more information on the Association of British Insurers website about genetic testing and insurance

As part of the testing process in the UK the genetic counsellors will discuss insurance and the implications of test results on obtaining insurance. Being tested is a massive step and something that is very much a personal and individual decision. If you are thinking about these things then it might be useful to make an appointment with the genetics clinic and speak to the counsellor about them. Genetics counsellors will see you at any age and are happy to discuss the process and reality of testing so this might be something to consider. It is better to take someone you trust along with you so that you have support and someone you can talk to about what was said at the appointment.

Huntingtons Disease Association of England and Wales also have a youth worker who may be able to help answer some questions that you have if you don’t want to visit the genetics clinic. You can find your local advisor here

I hope this is of some help, if you need anything else then please do not hesitate to get in touch again.

Catherine Martin