gentetic testing and insurance

[MumwithFH]

My consultant has agreed to test me to find out (if possible) what gene fault I have. I was keen to find this out but have just wondered if this will effect insurance premiums in the future? Has anyone else found this problem? Are there any other downfalls to having this test? Many thanks

[Aliwally]

I am absolutely for this DNA testing as I think it gives peace of mind and as exact a diagnosis as you can get. It also tells you if you haven't got it, which is just as important.

I have only come across one travel insurance site which wouldn't insure anyone with FH and I know that the main HEART UK website has info. I do not know about life insurance.

[MumwithFH]

Thank you Traci & Aliwally.

I had a different response from my consultant in ref to genetic testing. He said it showed some genetic causes but not all. He said even if it did not come up as positive for one of the known genes, he was certain I had it because of the LDL. He said that is why they don't always use it as it is only a way of picking up the most common recognised default gene which is still a small % (I think he said about 30%). The advantage would be if it did come up positive he said it would be the same genetic fault throughout my family and then we would know exactly what we were dealing with but he said that his recommended treatment would be the same.

[MumwithFH]

Just had a look at Tesco Holiday Insurance and they seemed happy to cover me for a small extra premium. I rang them up and they talked me through what I needed to select on their online forms.

[Aliwally]

My genetic test (which I fought to get!) tells me that they have excluded 95% of the genes responsible for causing FH in the UK. They are LDLR Ex1-18, PCSK9 Ex7, and ApoB Ex26. There is also PCSK9 which is less common and they didn't test for. I think LDLR is the most common (sounds like a railway company).

I suppose your consultant is right in that extremely high LDL, especially if it runs in the family is pretty likely to be FH.

Personally, I think DNA testing is most useful to exclude FH in people like me who have levels of 8 or 9 TC. If your TC is something like 15 that is likely to be FH. Again not an expert, just a poor patient who has acquired this information bit by bit! Good luck with your insurance.

[DakCB-UK]

I don't think generic testing will hurt your insurance. You're screwed as soon as you accept treatment for FH. This sucks and actively punishes people for taking care of their health! Insurance loading for treated chronic illnesses should be outlawed. After all, other people maybe simply haven't discovered their chronic illnesses yet!