Huntington’s Victoria has welcomed a five year moratorium on the use of genetic testing in assessing applications for life insurance.

The moratorium, which was put in place last year, means that people are not required to disclose the results of a genetic test when applying for cover up to set financial limits.

However, applicants may still be asked about their medical history and any signs, symptoms or diagnosed condition they or their close relatives have.

Huntington’s Victoria CEO Tammy Gardner said the organisation strongly supported the moratorium and would be pushing for it to be turned into a permanent ban.

“The decision to undertake genetic testing for Huntington’s disease is a deeply personal one that many members of our community agonise over,” she said.

“It is so important that they are free to make that decision without being concerned about how it might impact on any life insurance cover they have or may take out in the future.

“Genetic testing can be undertaken from the age of 18 and even if a person receives a positive result for Huntington’s it can be decades before any symptoms are observed and the disease is diagnosed.

“The moratorium, which will run until at least June 30, 2024, is designed to ensure that people can access a level of life insurance without being questioned about a previously taken genetic test.”

According to the Centre for Genetics Education, the moratorium applies to life insurance applications up to a cover limit of $500,000 (for death and total disability), $200,000 for trauma and $4,000 a month for income protection.

For people who do have a genetic test, life insurance companies must not use the results (up to the financial limits listed above) unless the person chooses to declare the results. There is also no requirement to alert an insurer to a test result after a policy has started.

An applicant can still be asked about diagnosed conditions, including HD, they have or are aware of in close relatives (parents, children, brothers, sisters) but not any genetic testing results received by those relatives.

The moratorium does not apply to private health insurance which, unlike life insurance, is not based on a risk assessment.

In applying for private health insurance or seeking a change in cover, people should not be asked about genetic test results or their family history of health conditions.

Waiting periods can still be imposed for pre-existing conditions but if a person is gene positive for Huntington’s but has no signs or symptoms, that does not qualify as a pre-existing condition.