Genomics poses data questions for insurance industry

Predictive genome tests are a powerful tool to detect cancer early. This could benefit the insurance sector, but there may be data privacy issues 


Genomic medicine could transform healthcare, saving countless lives. It also has huge implications for another sector: the insurance business. 

Health insurance has deep roots in the UK, reaching back to the 18th century. For many decades it was relatively straightforward. But the nuances of personal risk and the technological advances of the past 20 years have upended the industry. 

Among all these achievements, one stands out: decoding the human genome. While insurance policies have been finessed over generations, genomic medicine and its ability to interrogate an individual’s DNA for the merest hint of discrepancy opens up new dynamics. 

Take cancer screening. A range of companies are offering predictive tests that reveal predispositions to anything from breast to colorectal cancer. For the price of a mini break, you could discover the genomic undercurrents that may influence future health and act to mitigate the danger.

The prospect of such inexpensive, effective tests has broad appeal. For insurance companies, they help policy holders detect cancer at an earlier stage when treatment is less extensive and less expensive. For corporates, it means their employees potentially need less treatment and time off work while pay-outs for death in service benefits are reduced.

Cancer screening in the NHS is under pressure so anything that relieves burden on a stressed system is welcome, particularly as most insurance companies are dealing with increased critical illness and income protection claims from Covid-19.

The Association of British Insurers represents more than 200 companies, including those providing private medical insurance to 1.7 million people in the UK. It’s in close contact with the Department of Health and Social Care on how its code on genetic testing and insurance will respond to a fast-changing landscape. 

The open-ended code, under which insurance companies must not pressure applicants to take predictive tests nor use their results, is reviewed every three years. However, that approach might need to be replaced with a more fluid and regular assessment of the impact of genomic advances.

Cancer screening friction

Most insurance policies do not fund predictive tests and the industry believes it can price risk from medical history and health questionnaires, says Charlie Campbell, manager in the ABI’s health and protection team. It also has no interest in withdrawing from the code, no matter what predictive tests might emerge in the next few years. 

But such is the rapid improvement in testing’s ability to detect cancer, the ABI’s genetics working party has been tasked with exploring sensitive touchpoints to ensure genomic capability is harnessed positively and does not unhinge access to health cover. 

“If there is a need to change in future then we are in the position to talk with the government and manage that,” Campbell says. “The purpose of the code is to offer assurance to customers that taking a test isn’t going to have an adverse ability on them being able to take out insurance.”

That reassurance is needed. The government recently pulled back from a plan collect and share personal health records for research following public concerns over privacy and the data being made available to commercial interests

You don’t want to create a group of people that, in effect, become uninsurable

NHS cancer screening is a troubled sector.  It is estimated that more than 2.5 million missed their screening appointments and 40,000 less cancers were detected during lockdown.

Professor Gordon Wishart, chief medical officer at Check4Cancer, which provides private early cancer detection tests, says: “There is a lot of friction in NHS screening and diagnostic pathways”. He pointed to a Cancer Research UK report from 2019 – before the pandemic – which found that the UK had mediocre cancer survival rates, partly due to inadequate early cancer detection.

“We need to review our pathways and assess what additional screening we need on the NHS because getting screening right is crucial to improving survival rates in this country.”

Wishart, a former breast cancer surgeon, adds that early detection in some breast cancer patients can lead to 10-year survival rates greater than 90%. However, the rate dips to around 30% with late presentation.

Protecting patient health data

Wishart believes that insurance companies and private screening providers can forge a safe pathway to make testing more widely available, while still managing data privacy concerns.

“If we provide cancer screening for a company, the information belongs to the individual, not the company, and that medical data is heavily protected,” he says. “We do a lot of work with a range of companies; educating them about cancer and then providing screening because insurance companies are being asked by their clients to think about these things.

“This, I believe, will lead to a more integrated approach to screening.”

More companies want to start or expand health screening to their employees to detect cancers earlier so action can be taken to improve or treat their health with better results. The challenge is to balance the power of predictive testing with the data privacy.

There is time to work this out. While genomic medicine is advancing, it is still far from the norm. Dr Doug Wright, medical director at Aviva UK Health, believes polygenetic testing – a trawl through a person’s genome via a blood or saliva test to determine cancer risks - needs more evidence to become mainstream.

“I have no doubt at some point that the science will be there and we will have the ability to understand a person’s particular propensity to different diseases.  But although the testing robustness is not quite there yet, we need to have conversations about how the code should or shouldn’t work,” he says.

There is also a need to ensure that not taking a test does not become a barrier to health cover, Dr Wright cautions. “We ought to be having conversations with the government and striking that right balance because you don’t want to create a group of people that, in effect, become uninsurable,” he says. 

Safeguarding test results is enshrined in the code and experts believe the growing potency of testing will bring benefits to business and the health system, which is currently coping with a 6.8 per cent increase in the diagnosis of late and terminal stage cancer.

Professor Wishart states: “The impact of a cancer diagnosis in the workplace is wide-reaching, both on employers and employees. 53% of employees diagnosed with cancer face lowered income and 76% experience a negative impact on their family life.

“Evidence has shown than a proactive approach to managing cancer in the workplace can lead to better treatment outcomes, improved survival rates and better employee wellbeing.”