Whose rights? Insurance and genetic information

Genetic advances have great potential for improving health, but they also raise questions about privacy and who should have access to personal information such as genetic data. Take a look at the made-up scenario below to explore issues that are far from black and white

For some conditions, there are predictive tests that can be used to show whether someone is likely to develop the disease. These include inherited conditions – such as Huntington’s disease – that can be related to the effects of single genes, as well as diseases like breast cancer, where genetic components may increase the risk but are not the determining factors.

This information is valuable to health insurers because, like family history, it enables them to make better predictions about whether their customers are likely to become ill. However, in 2012, the UK government extended an agreement that gave people the right to refuse to disclose the results of genetic tests to insurers. That agreement (the Concordat and Moratorium on Genetics and Insurance) is now being reviewed, but it lasts until 2017.

With this in mind, think about the questions below. We’ve used the insurance industry as an example, but concerns about the misuse of genetic data apply to many groups, including employers, governments and journalists.

Potential situations

My grandmother died from breast cancer, and my mum now has the disease. I’m thinking about having a genetic test that would show if I am at increased risk. I’ve heard that insurers can’t ask for the results, but what if the law changes after I’ve had the test?” Helen, 26, nursery nurse

Q: Should Helen take a genetic test? Is knowing the results more important than protecting her genetic information?

 “As an insurer, I want to know if potential customers have had any genetic tests because the results could affect the policies I would offer them.” James, 35, insurance professional

Q: Do you think it would be right for insurance companies have access to potential customers’ genetic information? Why would it be different to knowing about their family history?

Case study: Huntington’s disease

A 2014 review of studies on genetic discrimination and life insurance found that customers who provided genetic information to insurers were rarely declined insurance or offered more expensive policies. However, in the studies that looked at Huntington’s disease, these types of ‘discrimination’ were more common.

Huntington’s is a rare and incurable genetic disease that causes gradual deterioration of the brain. It is caused by carrying a faulty copy of the Huntington gene.

In the UK, Huntington’s disease is the only exception to the Concordat and Moratorium on Genetics and Insurance: in certain circumstances, customers have to disclose the results of a genetic test to insurers. They must do so if they are applying for a life insurance policy worth over £500,000, critical illness insurance over £30,000 or income protection over £30,000 per year.

Not many people want to take out insurance policies worth this much, but those who do will probably have to pay more in the UK if they have tested positive for Huntington’s disease.

Q: Is it fair that people at risk of one type of disease have to disclose the results of genetic tests, while others don’t? Q: Should insurers get access to the results of other genetic tests? How should we decide which ones?

Lead image:

Zachary Korb/Flickr CC BY NC ND


Further reading

About this resource

This resource was first published in ‘Genes, Genomes and Health’ in January 2010 and reviewed and updated in December 2014.

Genetics and genomics, Health, infection and disease, Medicine
Genes, Genomes and Health
Education levels:
16–19, Continuing professional development