Genetic testing and insurance

The UK government and the insurance industry have a long-standing agreement on how genetic information can and can't be used when someone applies for insurance, known as the Code on Genetic Testing and Insurance. A call for evidence has been launched by the Department of Health and Social Care (DHSC) to establish if the Code needs to be updated when it's due for a review in a few years' time.

Currently, the code puts genetic tests into two categories.

• A predictive genetic test, which is used to test someone without symptoms to predict a future risk of developing a condition and generally doesn't have to be disclosed to insurers.
• A diagnostic genetic test, which is used to rule out or diagnose a condition based on existing symptoms and does have to be disclosed to insurers.

As genetic testing becomes more widespread in the NHS, the differences between a predictive and a diagnostic genetic test have also become more complex. For example, if someone received a positive result following a predictive genetic test for cancer risk, such as the BRCA1 test for breast and ovarian cancers, individuals currently do not need to disclose that result to an insurer. However, a positive result may lead to more frequent screening tests, and depending on the type of test, this may be in the form of hospital appointments which do have to be disclosed to insurers. Individuals also have to disclose family history of conditions. Together these factors can cause confusion for people as some feel that this additional information more or less provides the result of a predictive genetic test, just in a different way. This is why one of the main areas of focus for the call for evidence is the definition of a predictive genetic test versus a diagnostic genetic test.

The Code was first published in 2018 as a reiteration of the Concordat and Moratorium on Genetics and Insurance, originally published in 2001. At the time, the Genetics and Insurance Committee agreed that if a predictive genetic test met all three of the following criteria it could be considered as an exception to the rule, i.e. it must be declared to insurers.

• Does the test accurately detect the specific genetic change? (Scientific relevance)
• Does a positive result impact the health of an individual? (Clinical relevance)
• Do the health implications make it more likely that an individual will make an insurance claim? (Actuarial)

From the beginning, the only predictive genetic test that has been considered to meet these criteria is for Huntington's disease. A positive predictive test result for Huntington's disease must be declared to insurers but only for life insurance policies worth more than £500,000, a threshold that has remained the same since 2001. The vast majority of insurance policies that are taken out are below this threshold; however, the value of £500,000 has changed significantly over the past 20 years. Perhaps there is a consideration to be had about changing this threshold to keep up with current times.

Another focus area for DHSC's call for evidence is on developing a clear process on how to assess whether predictive genetic tests for other conditions should also be declared to insurers. This is essentially opening the door for other conditions that have predictive genetic testing available to be added to a list of exceptions. We think this could have significant impacts on individuals with these genetic conditions. If there is a process to potentially add conditions to a list of exceptions, is there scope to remove conditions from the list if new treatment options significantly improve patient outcomes?

People who incidentally find that they have a genetic predisposition to a condition while taking part in research currently do not have to disclose this information to insurers according to the current code. If this were to change at some point in the future, would this impact people's willingness to take part in genomic research projects and could this therefore potentially slow down the advancements in our scientific understanding?

The code doesn't cover all types of insurance, it only applies to life insurance, critical illness cover, and income protection insurance. For people living with rare and genetic conditions, we often see that accessing suitable travel insurance that covers an individual's medical needs is much more of a challenge. People with rare conditions are often denied travel insurance altogether based on a genetic diagnosis, despite not having many medical needs. A reassessment as to which types of insurance the code is applicable to could be a consideration for a future iteration of the code.

The code is in place to offer reassurance to people about how insurance companies use genetic information. This aims to ensure that individuals don't take a genetic test purely for the implications it may have on insurance policies, that they do it for their own health reasons. Therefore, it's important that all stakeholders engage with this call for evidence to ensure that the code remains fit for purpose in a rapidly evolving field of genomics and genetic testing.