People who are interested in taking part in Our Future Health sometimes have questions about genetic testing and insurance policies. For example, whether joining Our Future Health and receiving personal genetic information will have an impact on life and health insurance policies and premiums. Or whether we will share volunteers’ data with insurance companies. This is because, in some cases, receiving personal genetic information can indicate an increased risk of disease. 

This article addresses these questions and outlines how we are working with government and the insurance sector to inform our work on this issue.

What do I need to tell my insurer? 

Life and health insurance companies have a clear interest in technologies that can detect diseases early, such as genetic testing. Improving the overall health of the population is in their interest as well as the wider public interest. But they are also concerned that people who learn they have a higher risk of disease may not tell their insurers and may take out more insurance than they would have done, at premiums which do not reflect the extra risk.  

To give clarity to both insurers and individuals undergoing genetic testing, the government and the Association of British Insurers (ABI) have jointly agreed a voluntary Code of Practice on genetic testing and insurance. It explains what an insurance company does and does not need to know about the genetic testing you may have had when you apply for insurance. It covers life insurance, critical illness insurance and income protection insurance. The code applies to all ABI members, and other insurance companies who are not ABI members can choose to sign up. 

The government’s Consumer Guide on the Code gives a user-friendly summary of the code, including the following explanation of the difference between diagnostic genetic tests and predictive genetic tests:  

“If you are unwell, you may have a genetic test to help find out what is wrong. This is called a diagnostic genetic test. Some changes in your DNA can affect your risk of getting an illness in the future. You can have a predictive genetic test to find out about certain types of future risk, before you become unwell.” 

Crucially, for Our Future Health and other health research programmes like ours, the code states that people do not have to tell an insurance company about the results of a predictive genetic test or other genetic information that they have received exclusively in the context of scientific research.   

In addition, insurers who have signed up to the code confirm that they will never require or pressure anyone applying for insurance to undertake a predictive or a diagnostic genetic test, and will only consider the result of a predictive genetic test for a very small minority of cases (outlined in the code). Where a person has received a diagnostic genetic test result, they may need to report this to the insurance company, in the same way as they would for any other diagnostic test.   

Who will be able to access Our Future Health data for research?

Our Future Health will never sell or provide volunteers’ personal identifiable data for the purposes of advertising or, for example, to insurance companies. All access to Our Future Health data and samples will be decided by our Access Board, using a robust access process. They will only approve health-related research that is in line with the consent volunteers gave when they signed up, that is for public good and aligned to Our Future Health objectives, and that comes from researchers that have successfully completed our registration process to confirm their identity and credentials. All data made available to researchers will be de-identified to protect individuals’ privacy.  

Health research could be conducted by researchers employed by universities, government, the NHS, charities or companies involved in health research, such as pharmaceutical, diagnostics, technology or biotechnology companies – and they will all will be held to the same standard. You can read more about our approach to providing secure access to health data for research. 

What next?

The ABI code no longer has an expiry date and is open-ended to give the public reassurance that where future changes are needed, the insurance industry will look to manage this through the code. For example, understanding of genetic testing may change, meaning it is possible that in future there may be different predictive genetic tests that you may have to tell an insurance company about.  

Along with others in the sector, we are contributing to work by the ABI and the Department of Health and Social Care to regularly review the code and ensure it remains fit for purpose. Last week, Fiona Maleady-Crowe, our Executive Director of Ethics, Governance and Compliance, also spoke at the ABI’s Health and Protection event, ‘The future is now: Safeguarding the next generation in the face of uncertainty’, ensuring that the needs of research programmes and their participants are fully understood and considered by the insurance industry.