The Moratorium on insurers’ use of predictive tests was recently extended and 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, the Concordat protects the interests of both customers and insurers by preserving customers’ access to insurance, and insurers’ right of equal access to information about the associated risks.
• It allowes people to take out substantial amounts of cover without having to disclose the results of predictive genetic tests.
• It promotes fair assessment and risk pricing in the interests of all past, present and future customers.
In addition to this, 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). And 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.
Furthermore, 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).
In sum: 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', April 2011). Genetic descrimination in the workplace might indeed become one of these ‘novel and unpredicted purposes.’ As cases of genetic descrimination are becoming increasingly prevalent, the importance of the Concordat cannot be doubted. Most notably, in 2010, in the US, Pamela Fink took her former employees to court, claiming that she had been fired because of a mere genetic predisposition to cancer. Clearly, there can be no doubt that the Concordat meets a genuine need.
Put simply, the Concordat makes an exception to the principle of disclosure. By ensuring that those with negative results from a genetic test are able to obtain significant levels of insurance without disclosing the results of that test. In short: it ensures ‘fair rights of access’ to insurance. It might be argued that insurers should be allowed to calibrate their risks in this area. As we know, some insurers are reluctant to offer insurance on the grounds of age - why is genetics any different? Indeed, as age is seen as a predictor of ill-health, the very same principle might be applied to genetics. Of course, genetic discrimination would effectively penalize people for DNA inherited from their parents, and being penalized because of something for which one is not responsible is both unfair and counter-intuitive.
Is the current Memorandum, perhaps, indicative of the government's uncertainty regarding how to regulate this area? The bigger question, perhaps, is how policy will evolve globally? Among the questions that need to be answered are: why should insurers be prevented from mitigating risks? What are so special about genes? Why haven't the Government sought to legislate on this earlier?
EthicsandGenetics agrees with the substance of the concordat and, the apparent willingness of the insurance community to agree to it, as well as the will of the Government to seek an agreement in the first place. But what is needed are substantive legislative measures, not a mere agreement which will soon elapse. Otherwise, we are waiting for something and it isn’t obvious what that is.
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 legislation on genetic discrimination. Clear-sightedness about social values, is 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, the founder of EthicsandGenetics, is a bioethicist who has campaigned against violations of civil liberties, and published work in this area on the BBC News, the Guardian, the Independent, and the Daily Mail.