Ensuring your genes don’t affect your insurance

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The Progress Educational Trust (PET)’s recent Wellcome-supported event ‘Risk Management: Breast Cancer, Business and Patents‘ looked at how insurance companies can and can’t use genetic information to decide premiums, and discussed patents, profits and profiteering. Matthew Gwynfryn Thomas was there…

In an old Monty Python skit, a bespectacled man laments how “desperately dull and tedious and stuffy and boring” accountancy is. In a similar vein, Dr Ian Cox, admitted the same is true of insurance. “Insurance is boring. God, it’s boring”, said the former GP who now works in reinsurance – insuring the insurers.

It might not seem the most scintillating topic, but insurance can have profound consequences. What if your quality of life and ability to travel was restricted, not by a disease, but by restrictions in an insurance policy – something ostensibly designed to protect you, financially, from that disease?

The topic of insurance dominated the discussion at this event, especially when it became the audience’s turn to ask questions.

The evening’s expert panel included a former breast cancer patient, a solicitor, and a director of enterprise from the Institute of Cancer Research in addition to Dr Cox. As the sole representative of the UK insurance industry on the panel, Dr Cox might have been expecting a grilling from the audience. But he needn’t have worried – it was a night of good-humoured questioning, motivated by genuine concern and confusion.

Many of us in the UK fervently guard our privacy, and fear what might happen if our most personal information becomes the plaything of commercial interests. Your genome is the individual genetic recipe that led to the creation of your cells, bones and body. It doesn’t get more personal than that, so the prospect of information from your genes being misused is understandably unnerving. A study published last year managed to identify five out of ten people from supposedly anonymised genomes, using nothing more than publicly available genealogies and a clever algorithm.

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Clik here to view.There are concerns that information from genetic tests might affect insurance premiums. Dr Cox outlined the difference between the main categories of tests: predictive tests attempt to calculate your likelihood of developing particular diseases in the future based on which genetic mutations you carry, while diagnostic tests, usually carried out after symptoms appear, try to work out what is wrong.

Thankfully, the UK has a moratorium on the use of genetic information in insurance. Since 2001, and continuing at least until 2017, this moratorium represents an agreement between the Association of British Insurers and the Department of Health that the results from predictive genetic tests will not affect the cost or availability of insurance.

Diagnostic tests on the other hand, are considered fair game for insurers, as are personal and family histories of particular conditions.

So if, like Angelina Jolie, you find out you carry a BRCA mutation and decide to have your breasts removed before cancer can develop, preventative surgery should not affect you or your family’s insurance. (Equally deciding against such a step shouldn’t affect your premiums either.)

Jolie has a family history of cancer: her mother and grandmother died from the disease. UK insurers are allowed to consider that information but, from a UK insurance perspective, Jolie’s own BRCA mutation and subsequent mastectomy are not a part of that family history. We can only hope that this continues to be the case, and that identification of risky mutations does not become the modern equivalent of a red cross painted on your front door.

Throughout the PET event, Dr Cox tackled the good and bad sides of the insurance industry with a gentle demeanour, openness and eloquence. Asked to summarise his position at the end of the night, Dr Cox offered a simple suggestion – first get insured, then get the genetic test.

While simple advice and straightforward engagement are a good start, this area is anything but simple. With the participation of industry representatives in PET’s event, it felt as if the audience’s fears about commercial interests trumping the interests of patients were somewhat quelled. Audience members accepted that private companies must turn a profit and that is fine as long as those profits don’t become obscene.

The event’s panel clearly separated facts from fictions in the presence of a sceptical, earnest and honest audience. Initiatives like PET’s ‘Breast Cancer: Chances, Choices and Genetics’ project show how important it is to grapple with issues that, although complicated, are anything but boring.

The final event in the Wellcome-supported ‘Breast Cancer: Chances, Choices and Genetics’ project is ‘Breast Cancer Risk: Facts, Fictions and the Future‘, which takes place in London on the evening of Thursday 3rd July 2014. Attendance is free.

Image credit: Genetic screening – Paul Griggs, Wellcome Images

Image may be NSFW.
Clik here to view.

Image may be NSFW.
Clik here to view.