Genomics poses data questions for insurance industry

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

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.”