Corporate report – Code on Genetic Testing and Insurance: the government’s annual report 2023

The Code on Genetic Testing and Insurance (the code) was published in October 2018, replacing the Concordat and Moratorium on Genetics and Insurance. The code is a voluntary agreement between the government and the Association of British Insurers (ABI), whereby insurers who are signed up to the code will:

• never require or pressure any applicant to undertake a predictive or diagnostic genetic test
• only consider the result of a predictive genetic test for a very small minority of cases

To date, there is only one test for which insurers can request disclosure of results, which is a predictive genetic test for Huntington’s disease, in applications for life insurance cover that total over the financial limit of £500,000.

The UK government is of the view that it’s important everyone has access to good insurance at the right price. The code aims to provide reassurance to the public about how and whether genetic testing could affect their access to life, critical illness and income protection insurance products in the UK.

The agreement between the government and the Association of British Insurers (ABI) on the use of genetic test results in underwriting insurance policies. Code on Genetic Testing and Insurance – GOV.UK (www.gov.uk)

Genomics policy landscape

The UK is a world leader in genomics and, in 2020, the government published its 10-year genomic healthcare strategy, Genome UK: the future of healthcare, which sets out the government’s vision to create the world’s most advanced genomic healthcare ecosystem in the world, to deliver better healthcare at lower cost. The investment made by the UK government and NHS in genomics over the last decade has laid the foundations for the use of genomics in routine clinical care.

In October 2022, NHS England published Accelerating genomic medicine in the NHS, the first NHS genomics strategy to outline the vision for embedding genomics in the NHS over the next 5 years. The strategy is delivered through 4 priority areas:

• Embedding genomics in the NHS through a world-leading innovative service model.
• Delivering equitable genomic testing for improved outcomes in cancer and rare, inherited and common diseases.
• Enabling genomics to be at the forefront of the data and digital revolution.
• Evolving the service through cutting-edge science, research and innovation.

The UK government continues to invest in genomics to ensure that patients across the UK can benefit fully from genomic healthcare through a more preventative approach, faster diagnosis, and personalised and better treatment, leading to better long-term outcomes.

This year, 2023, has seen the field of genomics continue to evolve, improving our understanding of genomic medicine. This report highlights some of the progress made since the 2022 review of the code.

Published on the 18th of january 2024. Read the full news report here.