When scientists started studying the genetics of breast cancer, they hoped to understand the mechanism by which the disease developed and so reveal new ways of treating it.
They did not expect to end up furthering the commercial interests of insurance companies.
Yet insurers in Britain have been taking account of the results of genetic tests for breast cancer in granting insurance cover, even though two separate Government Commissions have recommended a moratorium on the use of such information.
Only after a public outcry has the Association of British Insurers accepted a voluntary, two-year ban on the use of genetic test results for policies over £300,000.
Insurers have a legitimate fear of 'adverse selection', whereby a known 'bad risk' might take out a very high insurance policy without disclosing their genetic status.
In theory, if one company were unlucky enough to have several such clients, it could endanger the financial stability of the company.
Insurers make their money by charging higher premiums to anyone with a higher-than-average risk.
Genetic test results offer one way of stratifying the risks that the company insures against.
But in my view the insurers are both overestimating the importance of genetics and learning the wrong lesson from experience in the USA.
The results of genetic tests do matter in the US, where health care is backed by private insurance, but not in the UK, where health insurance is compulsory and universal.
Private health insurance companies have a powerful incentive not to insure someone at risk of Huntington's Disease - a progressive neurological disorder which can lead to many years in hospital.
But life insurance provides cover against someone dying during the currency of the policy.
And, while some genetic tests may predict what you may die of, they do not predict the timing of death.
So the tests are not relevant to life insurance, which is more important in Britain than healthcare insurance.
Secondly, it is gradually becoming apparent that, because of the rarity of the inherited forms of breast cancer, the numbers of cases involved are tiny.
It is inconceivable that an industry with an annual turnover of billions could be seriously threatened by their occurrence.
The two genes (BRCA1 and BRCA2) that have been linked with breast cancer account for less than five per cent of all cases.
Those who have one of the genes are not certain to develop the disease and can, in any case, take steps to minimise their risk.
Why then do the insurers persist? One suggestion is that they are not really interested in the single-gene disorders, like Huntington's and the few inherited breast cancers, but are laying down a marker for the future, when genetic susceptibility tests might be available for all the common diseases of the West.
If there is even a glimmer of truth in this rather cynical view then the struggle to keep genetic test results private is a matter of concern not just for the small number of families affected by genetic disease, but for everyone.
They did not expect to end up furthering the commercial interests of insurance companies.
Yet insurers in Britain have been taking account of the results of genetic tests for breast cancer in granting insurance cover, even though two separate Government Commissions have recommended a moratorium on the use of such information.
Only after a public outcry has the Association of British Insurers accepted a voluntary, two-year ban on the use of genetic test results for policies over £300,000.
Insurers have a legitimate fear of 'adverse selection', whereby a known 'bad risk' might take out a very high insurance policy without disclosing their genetic status.
In theory, if one company were unlucky enough to have several such clients, it could endanger the financial stability of the company.
Insurers make their money by charging higher premiums to anyone with a higher-than-average risk.
Genetic test results offer one way of stratifying the risks that the company insures against.
But in my view the insurers are both overestimating the importance of genetics and learning the wrong lesson from experience in the USA.
The results of genetic tests do matter in the US, where health care is backed by private insurance, but not in the UK, where health insurance is compulsory and universal.
Private health insurance companies have a powerful incentive not to insure someone at risk of Huntington's Disease - a progressive neurological disorder which can lead to many years in hospital.
But life insurance provides cover against someone dying during the currency of the policy.
And, while some genetic tests may predict what you may die of, they do not predict the timing of death.
So the tests are not relevant to life insurance, which is more important in Britain than healthcare insurance.
Secondly, it is gradually becoming apparent that, because of the rarity of the inherited forms of breast cancer, the numbers of cases involved are tiny.
It is inconceivable that an industry with an annual turnover of billions could be seriously threatened by their occurrence.
The two genes (BRCA1 and BRCA2) that have been linked with breast cancer account for less than five per cent of all cases.
Those who have one of the genes are not certain to develop the disease and can, in any case, take steps to minimise their risk.
Why then do the insurers persist? One suggestion is that they are not really interested in the single-gene disorders, like Huntington's and the few inherited breast cancers, but are laying down a marker for the future, when genetic susceptibility tests might be available for all the common diseases of the West.
If there is even a glimmer of truth in this rather cynical view then the struggle to keep genetic test results private is a matter of concern not just for the small number of families affected by genetic disease, but for everyone.
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