The Moratorium on insurers’ use of predictive tests was recently extended. The UK Government has launched a consultation on how it is working in practice. The Moratorium is exclusively concerned with tests used to predict future illness. While EthicsandGenetics applauds these developments - as the Concordat is merely an agreement - the question remains: how long will it last for, and most importantly, the Government will eventually have to regulate this new terrain by way of legislation; when we arrive at this point, what kind of legislative measures can we expect? Can we assume that future legislation will broadly reflect the current Concordat? Let us firstly consider its substance.    

In brief: The Association of British Insurers (ABI) and the Government have agreed to the following measures:

A. To abide by a policy framework that ensures that insurers’ use of genetic information is transparent, fair and subject to regular reviews.

B. Remain committed to the voluntary Moratorium on insurers’ use of predictive genetic test results until November 2017, and the scheduled review of the Concordat in 2014.

It was also agreed that the Association of British Insurers will not seek to end the agreement before the end of the Moratorium, and the Government will not introduce legislation on the use of genetic test results or family history during the term of the agreement.

The overarching purpose of the Concordat is that it ensures 'fair rights of access.' In principle, it protects the interests of both customers and insurers, by preserving customers’ access to insurance, and insurers’ right of equal access to information about risks:

• To insurance for consumers – by allowing people to take out substantial amounts of cover without having to disclose the results of predictive genetic tests.

• To relevant information for insurance companies – to enable fair assessment and risk pricing in the interests of all past, present and future customers.

Moreover - the Concordat seeks to create a ‘robust and flexible framework for cooperation’ between the Government and the ABI and its members. The purpose of which is to “balance the needs of consumers to have fair rights of access to insurance with the need for a commercially viable, long term and fair insurance market.” It applies to “predictive genetic tests, which examine the structure of chromosomes (cytogenetic tests) or detect abnormal patterns in the DNA of specific genes (molecular tests). It doesn't apply to diagnostic genetic tests, nor does it apply to non-genetic medical tests, for example, blood or urine tests for cholesterol, liver function or diabetes.

Applications to approve the use of predictive genetic test results by insurers will only be for conditions that are:

A. monogenic (single gene disorders that are inherited in a simple fashion);

B. late-onset (symptoms are delayed until adult ages); and of

C. high penetrance (a high probability that those with the gene will develop the disorder).

The UK Insurance community have effectively agreed to the following:

A. customers will not be asked, nor will they be put under pressure, to take a predictive genetic test to obtain insurance cover

B. customers who have taken a predictive test before the date of this Concordat will be treated in the same way as customers taking tests under the terms of the Concordat

C. customers will not be required to disclose any of the following:

i. A predictive genetic test result from a test taken after the insurance cover has started, for as long as that cover is in force

ii. The predictive test result of another person, such as a blood relative

With reference to the Concordat, Public Health Minister Anne Milton said: “This is an excellent agreement that has benefited many consumers. The extension and strengthening of it will make sure that the public continue to have the confidence to use predictive genetic tests whilst being reassured that they can still get insurance.” Stephen Gay, Director of Life, Savings and Protection at the ABI added that: “The agreement on genetics and insurance has provided a lot of reassurance for people since its introduction. This is the second time it has been reviewed and extended, which means people will continue to be able to take out very sizeable amounts of insurance without having to disclose predictive genetic test results.”

According to the Human Genetics Commission (HGC), inexpensive whole-genome sequencing and greatly reduced costs for genetic tests in general, will provide the “platform for genetic testing to be used for novel and unpredicted purposes” (Report on The Concept of Genetic Discrimination, Aril 2011). Among these ‘novel and unpredicted purposes’ is genetic discrimination in the workplace. As such cases are becoming increasingly prevalent, the importance of the Concordat cannot be doubted. Most notably, in 2010, Pamela Fink, took her former employees to court, claiming that she had been fired because of a mere genetic predisposition to cancer. This case arouses alarm. It is the kind of case the Concordat is designed to prevent.

Ultimately, the Concordat on insurers’ use of predictive tests makes an exception to the principle of disclosure. It ensures that those with negative results from a genetic test are able to obtain significant levels of insurance without disclosing the results of that test. Put simply, it ensures ‘fair rights of access’ to insurance. But, it could be argued that insurers should be allowed to calibrate their risks in this area. Some insurers are reluctant to offer insurance on the grounds of age, why, therefore, is genetics any different? Age is seen as a predictor of ill-health; the very same principle could be applied to genetics. Of course, genetic discrimination would effectively penalize people for DNA inherited from their parents. Penalized because of something for which one is not responsible is both unfair and counter-intuitive; we should not be legitimately sanctioned because of it. But the aged are; why make an exception because of genetics?

Is the current Memorandum indicative of Government uncertainty regarding how to regulate this area? The bigger question, perhaps, is how policy in this area will evolve globally? Among the questions that need to be answered are: why should insurers be prevented from mitigating risks? What is so special about genes? Why hasn’t the Government sought to legislate on this earlier? The government currently recognises the needs of the insurance sector to increase levels of premiums and even not to offer insurance on grounds of age in certain circumstances; if genetic predictors are analogous to age the question then becomes: is it coherent to protect genes but discriminate against age? With time, what concessions will be made to insurance companies? Given that genes might be a useful predictor of health, will the 'special status' of genetics and the protection this area is currently receiving be safeguarded in the long-term? 

EthicsandGenetics stands behind the substance of the concordat, the apparent willingness of the insurance community to agree to it and the Governments position. But, what is needed is even more resolve, in the form of substantive legislative measures. Otherwise, it seems we are waiting for something and it isn’t obvious what we are waiting for. While the current policy framework on insurance and predictive genetic tests and, the consultation on how it is working in practice, are both a step in the right direction – more needs to be done to shape future legislation on genetic discrimination at every level. Genetic discrimination in the workplace, due to a lack of certain genes, let alone a predisposition to illness, may also become a reality. What needs to be straightened-out is what we think about these issues. Coherence, clarity of thought and clear-sightedness about social values – are all essential if we are to get our policies right in this new, troubling and immensely complex area. In the meantime, in order to ensure effective monitoring of the concordat, consumers and patient groups are invited to submit relevant evidence to the Department of Health. I would urge anyone with anything of relevance to contribute.

Edward Hockings