The UK Government and Association of British Insurers (ABI) have agreed to extend their voluntary moratorium on the use of predictive genetic test results by insurers by another two years, to 2019.
Originally established in 2001 and periodically reviewed and renewed ever since, the Concordat and Moratorium on Genetics and Insurance is a voluntary agreement intended to protect the interests of both individuals (by ensuring appropriate access to insurance) and of insurers (by ensuring access to information about risks).
Once again, there has been no significant change to the substance of the agreement; individuals must only disclose genetic test results to insurers in the case of Huntington’s disease tests and for life insurance policies worth in excess of £500,000. It is worth noting that anyone undertaking a genetic test for Huntington’s disease almost certainly does so in the face of a family history of the condition, which must be disclosed to insurers anyway.
However, the concordat contains two new elements. An additional Annex 2 explains the important distinction between predictive and diagnostic genetic tests. Predictive or presymptomatic tests are taken in the absence of clinical signs of disease – for example, to assess the risk of developing specific cancers. Even though some of these tests may reveal a very high risk of cancer (for example, the lifetime risk of breast cancer in BRCA1/2 mutation carriers is up to 85%), UK insurers have agreed that such test results need not be disclosed when applying for health or life insurance. Diagnostic tests confirm or rule out the presence of a genetic condition that is known or suspected on the basis of clinical symptoms or non-genetic test results.
The concordat also clarifies that the results of whole-genome sequencing performe in the context of ‘major research projects, like the 100,000 Genomes Project run by Genomics England’ need not be disclosed to insurers, because they are part of a research project.
In the US, where there is a largely insurance-based health system (often linked with employment), the Genetic Information Nondiscrimination Act (GINA) prohibits the use of genetic test results by insurers or employers. This is intended to ensure that people with high genetic risks of disease are not condemned to pay heavy insurance premiums or denied health insurance – although as in the UK, family history of disease is always likely to have a strong impact, such that people who receive negative genetic test results indicating a normal disease risk may actively wish to share this information with insurance providers.
The purpose of the UK moratorium is similarly to ensure that individuals are not debarred from health or life insurance as a result of genetic testing. However, it is a voluntary agreement as opposed to a law; the UK has a taxpayer-funded National Health Service (NHS), such that only a small proportion of people have additional, private health insurance. The Medical Director of NHS England, Professor Sir Bruce Keogh, recently opined that the advent of genomic medicine made the free at the point of care NHS “more important than ever”.
The Concordat and Moratorium will be reviewed again in 2016.