Agreement on use of Predictive Genetic Tests Results by Insurers Announced in UK
Mar 18, 2005 - 4:32:00 PM
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We are really pleased with todays announcement as it provides a more robust framework and added certainty for people living with genetic disease. This will mean our members and their families will be able to make decisions on whether to have predictive genetic tests without fear of the insurance consequences
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By DOH, UK,
[RxPG] Health Secretary John Reid today announced that genetic test results used to predict possible future illness will not be used to deny people insurance. The Government has negotiated an agreement with the Association of British Insurers (ABI) to extend the current restrictions on the use of predictive genetic tests result by insurers, to November 2011.
This forms part of a new binding framework between ABI and the Government. Published today, the framework Concordat and Moratorium on Genetics and Insurance is designed to re-assure people who may be deterred from taking predictive genetic tests for fear of the insurance consequences.
The framework sets out that no one will be required to disclose the result of a predictive genetic test unless it is first approved by the Governments Genetics and Insurance Committee (GAIC), and is for insurance of more than £500,000 for life insurance, and £300,000 for critical illness and income protection insurance. Over 97% of all policies are for much less than these amounts.
To protect patients, the framework also sets out a further set of commitments on the information insurance companies can ask for. For example, genetic tests taken as part of a research study do not have to be disclosed to insurers. This is good news for UK clinical researchers, as it removes a potential obstacle to patient recruitment in the development of live-saving diagnostic tests, treatments and medicines.
Health Secretary John Reid said:
Choosing to have a predictive genetic test can be life saving, and nobody should be put off having such a test because of fears it will be used against them by insurers.
Genetic tests that may predict disease have only recently been developed, but this framework sets out a stable and sensible environment to help support the future development of genetics.
Advances in genetics will have a profound impact on healthcare. We have been working hard to ensure these benefits can be realised throughout the NHS. As part of our commitment outlined in the genetics White Paper we are investing £18m specifically to expand laboratory capacity for genetic testing. By 2006, patients tested for a known gene mutation will have their results available within 2 weeks.
The NHS, with its basis of universal health care funded by taxation, is ideal for capturing the benefits of genetic advances. By dispelling fears over how predictive genetic tests will be used, we are removing barriers to realising those benefits.
Antonia Bunnin, Director of Policy and Campaigns at charity Breakthrough Breast Cancer, which has campaigned hard on this issue, said:
"This news will be a great relief for women with a family history of breast cancer. Our research shows that nearly a third of these women would not take the genetic test if insurance companies were able to access this data, potentially putting their health at risk. Choosing to take a genetic test is a difficult enough decision to make without the added fear that insurance companies may use this information against them"
Alastair Kent, Director of the Genetic Interest Group said:
We are really pleased with todays announcement as it provides a more robust framework and added certainty for people living with genetic disease. This will mean our members and their families will be able to make decisions on whether to have predictive genetic tests without fear of the insurance consequences.
For people choosing to take a predictive genetic test, it is vital to have support and understanding. The Department of Health has just recruited ten GP posts throughout the country with a special interest in genetics, as part of a pilot scheme. They will support primary care in many areas of genetics by providing education and advice to staff and patients.
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Additional information about the news article
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1. Copies of the Concordat and Moratorium on Genetics and Insurance document is available on the website at the link provided:
2. Thousands of people in the UK have had diagnostic genetic tests, but not many have had predictive genetic tests. There are only 2-3 tests that are currently of interest to insurers. These tests look at the BRCA1& BRCA2 genes, which are involved with inherited breast and ovarian cancer, and the HD gene, which is involved with Huntingtons disease.
3. The NHS carries out about 500-600 predictive genetic tests a year for Huntingtons disease and between 40-50% are positive. In 2004, 4635 tests were carried out on BRAC1 & 2 genes. Around 1,000 of these were predictive genetic tests on women with a family history of genetic breast or ovarian cancer and 45-50% were positive. The other BRAC1 & 2 tests were carried out on women with cancer to see if they carried the faulty gene.
4. The only predictive genetic test approved by GAIC for insurance purposes is for Huntingtons Disease for life insurance. This was approved in October 2001. Huntingtons disease is a devastating degenerative fatal brain disorder and almost everyone who carries the damaged gene will develop the disease. Whilst there is presently no cure, a positive test result can give people more time to come to terms with the disease.
5. For individuals with damaged BRCA genes, predictive genetic tests can be life-saving. A positive test lets the individual know they are at increased risk of developing cancer. With this information, various preventative options can be explored. This could include more frequent screening, the use of preventative medicines, and even surgery such as mastectomy or oophrectomy (removal of the ovaries).
6. The ten GP posts with a special interest in genetics are located in Leicester, East Elmbridge and Mid Surrey, Walsall, Derbyshire, Cambridge, Oxford, Wolverhampton, Newcastle, Bradford and London.
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