Genomic medicine is accelerating rapidly in the UK, opening up opportunities to improve people’s lives. Meanwhile, insurance is described by the industry as the sector that helps people and organisations and prevents risks from crystallising. If insurers were able to access genomic data, this could improve affordability and also facilitate preventative healthcare for their customers. But who benefits most from accessing customers’ genetic and genomic data?

There is nervousness even about insurers accessing aggregate data, given the highly sensitive and private nature of genomic data. 

At the same time, the Code on Genetic Testing and Insurance - an agreement between the government and the Association of British Insurers on the use of genetic test results in underwriting - bans insurers from asking customers for predictive genetic tests. 

Nicky Bray, chief underwriter for UK life at Zurich, said interests are aligned between insurers, customers and society, given that insurers are keen to avoid foreseeable harm. 

“What we're all trying to do, whether that's from different perspectives, is trying to protect the families or customers against the risks regarding life expectancy, or the risk of ill health in the future,” she said during a panel discussion at the annual conference of the Association of British Insurers on Tuesday.

She outlined three examples where the result of genetic testing could affect the lives of people: Huntington's disease, BRCA gene for cancer and cardiomyopathy. 

Bray said the focus on Huntington's is mainly on people testing positive of the disease, but for those testing negative, there “can be quite a devastating impact” especially when they are siblings of people who are positive or even when the expectation of a positive result is high.

She explained those people may make certain decisions on life choices, for instance, not saving for a house, before a test result turns out to be negative.

For the BRCA gene, Bray said the result of genetic testing often leads to a difficult decision as to whether to have surgery. For cardiomyopathy, she said people such as footballers and athletes may be told not to carry on with their chosen professions even if they appear to be feeling well, healthy and fit. 

“It’s a very difficult area, but fundamentally we're all looking to protect the future of customers.”

According to Dr Keith Klintworth, group chief operating officer and managing director at VitalityHealth, said insurers could take a reward-and-penalise approach in their pricing, for example, to people who at risk of developing the diabetes and therefore want to maintain a healthy lifestyle to reduce the probability of developing the disease. 

Dave Nicholas, chief underwriter at Gen Re, said consumers’ understanding of their test result is, “not surprisingly”, variable. 

He said: “It's an extremely challenging area to understand even for the experts. Whether diagnostic or predictive, it is often discussed and extremely challenging emotional circumstances. I think the real positive benefit is there's a lot of help out there.”

For instance, he said genetic professionals enhance an individual’s understanding of their genetic condition. In addition, organisations such as Genetic Alliance UK “have lots of support and advice for families who are touched by this issue”.

“There is a plethora of online resources out there for consumers to increase their understanding, including our own code as well as other government websites.”

For insurers, he said firms’ understanding of genetic test results “is pretty good”.  

“Insurers typically have a lot of experts internally and externally, which they can reach out for advice. They partner up with insurance and medical experts in that regard. I know that one reinsurer has access to clinical geneticists. They also got access to developments,” Nicholas said, adding that insurers also look for continuous improvement to obtain knowledge. 

“We keep a log of all the cases for consistency for learning opportunities… We're always looking to update our guidelines and our approach to this.”