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SN undiagnosed genetic conditions

Travel insurance during genetic testing

4 replies

Zampa · 10/08/2016 19:25

I've recently tried to obtain travel insurance for DD. She has delayed development but is otherwise healthy.

Unfortunately, even specialist travel insurers won't cover her due to the ongoing genetic testing (full exome). This is on the basis that there may be an underlying condition that is yet to manifest itself.

Had anyone successfully obtained insurance?

At the moment we're considering going to Europe with only DD's EHIC to cover her. Is that unwise?

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Kanga59 · 17/08/2016 19:46

Are you in the UK?

Why/how was the exome testing informed to the insurance company? did they ask the specific question to which you needed to answer yes or no?.

let me dig out the name of our travel insurance provider

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Kanga59 · 17/08/2016 19:53

Have you tried
Clear Insurance
Travel Extras
Stay Sure
Designed for travel

if the coSt is prohibitive, you could try a charity such as jeans 4 genes to see if thy would give you a grant to cover it

worth noting that I'm in the 100,000 genomes project and it's non disclosable to insurance companies. what is the protocol with your exome study?

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Kanga59 · 19/08/2016 19:05

I happened to see a genetic counsellor today and asked about insurance. insurance companies can ask about family history they can't ask about, and you don't have to disclose, genetic testing (whether exome or genome or targeted). genetic testing is non disclosable as agreed with the ABI.

If you feel you've disclosed too much such that insurance is not forthcoming, go to a different provider. and give your family history as -is. You don't disclose the genetic testing because it's non disclosable.

If your child has seizures (which may have triggered the genetic testing for example), just say they have seizures/epilepsy. and stop there. Good luck!

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Zampa · 15/11/2016 21:20

Kanga - just seen this so sorry for not acknowledging your response. Thank you.

I disclosed the testing as something which relates to her delayed development so will do as you suggest when we next go on holiday.

Thank you again.

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