Thread: E - Petition
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Old 19-05-13, 09:13 AM   #33
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Join Date: May 2010
Location: England
Posts: 2,391
Default Re: E - Petition

Morning everyone!

We have reached 2,560 signatures out of 100,000 needed by Jan 2014 to get the petition 'considered' for debate in the House of Commons.

See Petition HERE

My Twitter Account has been suspended again so that puts a bit of a halt on my trying to get the petition out there for more signatures/public awareness and hopefully 'Celebrity' endorsement by way of their ReTweeting it to their Followers. If any of you guys have Twitter Accounts it would be REALLY helpful if you could spend a few moments a week to get the link out there. I can provide suggested wording if you like.

If you haven't yet signed please PLEASE do sign. It only takes a few minutes. Please also make sure if you have signed that your signature has been verified by clicking on the link they would have e-mailed to you. It's worth trying to sign again if you are not sure. If your signature has gone through it will tell you it's already been cast against the petition.

Please PLEASE send the link and mention the petition to everyone you know in order to urge them to sign.

The full link is

The petition mentions the position on Insurance. I e-mailed the Association of British Insurers and asked them to outline the current position. This is the reply I got:

Thank you for your enquiry. Since 2001 the ABI has had an agreement with the UK government that no predictive genetic test results will be taken into account in applications for insurance except in very specific circumstances:

1. Where the cumulative value of the benefits exceed £500,000 of life insurance, £300,000 for critical illness cover, or of £30,000 a year for income protection insurance; and

2. The predictive genetic test is approved with Government for use with the type of insurance the person has applied for.

For a predictive genetic test result to be approved the following five conditions must be met:

1. The gene and the associated disease must be listed in the UK Genetic Testing Network’s NHS Directory of Genetic Testing to show the clinical sensitivity and specificity of tests for any particular gene pattern, the relevance of the gene pattern to the associated disease, and the availability of reliable tests.

2. The predictive genetic test can be for:

a. A monogenic disorder - that is, a single gene disorder that can be inherited from one or both parents

b. The disease must be late-onset with symptoms delayed until adult ages

c. There must be a high probability that those with the particular gene pattern will develop the disease – that is, there is high penetrance

d. An adverse predictive genetic test result for the particular gene pattern would affect the terms, if any, that an insurance company might offer for the specific insurance cover for which the application is made.

At the moment only one predictive genetic test has been approved by the Government; the test for Huntingdon’s Disease. Therefore this is the only predictive genetic test result which customers need to be aware that they should disclose. Even then someone with an adverse genetic test result for Huntingdon’s Disease need only disclose this test result in specific circumstances, namely:

1. They are applying for Life Insurance. (They are able to take out Critical Illness and Income Protection policies without disclosing this test result).

2. The Life Insurance has a value of over £500,000. (They are able to take out Life Insurance up to this amount without disclosing this test result. Only a small percentage of Life Insurance policies which are taken out in the UK each year have a value of more than £500,000).

I have attached a consumer guide which may be of interest. This was produced by Genetic Alliance UK, with the help and advice of the ABI and with funding provided by our members.

If you have any more questions about this please do not hesitate to get in touch.

The way they wrote the reply sugests there will hardly be any times the discrimmination will ever apply so we are not to worry. My take on that would be... if it's that unlikely to be an issue then why bother with discriminating in the first place? After all.. it's not like these big companies would go bust if those with HD ever needed to claim surely if it's only going to apply in the very rarest of cases? If you look at the 'consumer guide' link it brings it into stark reality that whether it would apply or not the only illlness that gets a mention is Huntington's. Things are changing of course with the new tests for other illnesses (think Angelina Jolie here and the Breast Cancer tests). The public should know about the plight of those with HD as they too will pay our price later on the basis of 'If you tolerate this... then your children willl be next'.
I tried.
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