Genetic discrimination: live and well in insurance law

Don’t take that Huntington’s test, it could have financial consequences...

This is the heartless realty of genetic discrimination in the UK.

There is no stand-alone legislation prohibiting genetic discrimination, with the Equality Act not explicitly prohibiting it.

But perhaps this is a niche area of law which needs to be brought to the forefront?

Attempts have been made.

A proposal to include genetic characteristics as a prohibited ground for discrimination was brought forward in 2007...

And then rejected.

The lack of regulation has led to some confusing outcomes within the world of insurance law...

If you want to take out a life insurance policy for more than £500,000, the insurance company can ask to see the results of a previously taken predictive test for Huntingtons disease

While they cannot require you to take one, what looks more suspicious? Refusing to take a test or refusing to hand over the results of a test in which you have already taken?

When handing over a negative result can lead to better premiums, refusing to hand over a test result speaks volumes.

While objectively, it can be understood why insurance companies are especially interested in the likelihood of someone having a disease like Huntingtons, it is not the only terminal illness.

It just happens to be the one with a highly accurate predictive test (approaching 100% in identifying the specific gene mutation).

The test is reliable, yes, but it only reveals if someone carries the gene mutation associated with the disease, not whether or not they will develop symptoms or when this will happen.

Huntingtons is fatal with a life expectancy of 10-30 years following onset, but there are many fatal diseases, some with shorter life expectancies.

But Huntingtons is genetic.

Should people who might eventually be affected by this disease really be punished in the world of medical insurance for the medical breakthroughs which led to the predictive tests?

This is lawful genetic discrimination.