Counselling the code: genomic testing and insurance

Genetic counsellor Megan Rogers looks at the new Code on Genetic Testing and Insurance and what it means for patients and counsellors

The Code on Genetic Testing and Insurance is an agreement between the Association of British Insurers (ABI) and the government outlining the code of practice for the use of genomic test results in insurance. Published in October 2018, the code replaces the previous Concordat and Moratorium on Genetics and Insurance and means some important changes for patients and counsellors.

Protecting our patients

The purpose of the code is to protect individuals from discrimination by insurance companies based on their genomic test results; and it’s needed more than ever given the ever-increasing availability and uptake of genomic testing either through the health service and clinical trials/research projects or via direct-to-consumer testing.

The code regulates the activity of all insuring members of the ABI providing life, critical illness and income protection insurance. The first stipulation is that insurance providers may not request applicants to undergo diagnostic or predictive genomic testing in order to obtain insurance – unless an individual is seeking life insurance over £500,000. In this case, the prospective insurer may request a predictive test for Huntington’s disease.

The code also acknowledges the distinction between diagnostic and predictive genomic test results. Unlike predictive results, which anticipate future health risk, diagnostic tests are used to identify or confirm current illness. Recognising this distinction, the code advises that results of diagnostic genomic testing may be incorporated into any individual’s insurance assessment.

Unlike the previous guidance, the new code has no end date, but will be reviewed every three years to ensure it is kept in line with any changes in genomic testing and the corresponding impact on the insurance market. In addition, a joint annual report by the ABI and government will review developments in genomic medicine, the insurance market, and code compliance.

Talking insurance: knowing the facts

When presented with the option of genomic testing, many patients ask about the impact this could have on their current and future insurance policies. They often ask which policies are likely to be affected, what they need to tell their insurance providers, and how their children’s prospects for obtaining insurance could be affected. Though healthcare providers don’t need to possess great expertise on the subject, understanding some key aspects of the code will help us to better counsel our patients on this topic.

What’s allowed

Insurance providers require substantial information about an individual’s medical and family history in order to complete an assessment. The new code clearly outlines the aspects of medical history, particularly genomic test results, that may be incorporated in an assessment by ABI members. These include:

  • family medical history;
  • GP records, within the boundaries of data protection and with applicant consent;
  • diagnostic genomic test results as part of relevant medical records; and
  • predictive genomic test results for Huntington’s disease for life insurance policies of over £500,000 per person.

ABI member insurers are not permitted to request or incorporate the following information in any assessment:

  • Predictive genomic test results for any genomic condition for:
    • life insurance of under £500,000 per person;
    • critical illness insurance;
    • income protection insurance;
    • travel, private medical, or other insurance.
  • Results of predictive genomic tests completed after the start of an insurance policy, for the duration of insurance coverage.
  • Predictive genomic test results obtained through scientific research.

Family members

Under the new code, insurers may not ask individuals to provide predictive genomic test results for another person, including their biological relatives.

Even if an applicant voluntarily discloses the results of their own or a relative’s predictive genomic test, these results cannot be taken into account by the insurers (unless dealing with a request for life insurance over £500,000, as outlined above).

New reassurance for old uncertainty

Unlike the new code, the previous agreement expired every three years, causing great uncertainty which contributed to many patients deciding to delay or decline genomic testing. In contrast, the new open-ended agreement aims to provide stability and reassure patients that there will be continuous protection against discrimination by insurers on genomic grounds.

To ensure the code remains fit for purpose, the government and ABI publish annual reports to provide commentary on the state of the insurance market and developments in genomic technologies, as well as details on compliance with the code. You can view the government’s first annual report here and its second annual report here.

As genetic counsellors, the code helps us look positively into the future of genomic testing, and we can continue to provide invaluable added reassurance to our patients as we continue to facilitate their decision-making surrounding genomic testing.

Megan Rogers is a genetic counsellor at University Hospitals Bristol NHS Foundation Trust

Please note: This article is for informational or educational purposes, and does not substitute professional medical advice.