Hereditary bowel cancer claimed the lives of three women in Dwayne Honor’s family. They had Lynch syndrome, a genetic condition that increases the chances of certain cancers developing. But he never expected it to affect his insurance.

For years the Bundaberg resident and members of his family participated in university research to help understand and deal with the common condition. About one in 280 people are believed to have it.

As genetic testing becomes more accessible, more people are taking action to detect Lynch syndrome and similar diseases, but insurance companies can sometimes also get the same information.

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Honor says despite a moratorium preventing insurers from requesting genetic data for claims under $500,000, one of his family members was denied life insurance in 2023. He worries his children will have the same problem and he’s been unable to update his own life insurance policy, which predates genetic testing.

Honor, who has never been tested for Lynch syndrome but who undertakes regular screenings for bowel cancer, feels he’s “being discriminated against purely based on the genes I was born with”.

“I can’t choose my genetic makeup, so why should any financial service provider be able to discriminate against me?”

Paediatrician and chair of parliament’s health committee, Mike Freelander, agrees it’s a form of discrimination. The committee has recommended the insurance industry be banned from accessing people’s genetic testing results as part of a crackdown against the discriminatory use of health data.

But the life insurance industry is fighting a total ban and instead wants a financial cap on insurance policies offered without disclosure.

According to a 2023 Treasury report, there are more than 5,000 health conditions known to be caused by genetic variations.

Freelander says “genetic discrimination” – where life insurers charge extra or deny coverage to people who have a proven genetic risk – is discouraging people from testing in the first place.

“We really are now at a tipping point where we need to decide who should have that information, and how it should be used,” he says.

“Some businesses – insurance companies in particular – really want to get hold of this information because it makes it easier for them to pick and choose who they provide services to.”

Freelander prefers a simple ban on access to genetic information. He says there’s just no responsible way to regulate a private company into behaving responsibly with it.

The UK and Canada imposed total bans in 2001 and 2017, respectively. Under the Canadian ban, information can only be submitted voluntarily by a person seeking to prove they do not have a condition that runs in their family.

Jane Tiller, a Monash University researcher who has led the campaign for reform, is concerned the insurance industry is trying to persuade the federal government to adopt a false compromise.

Since a 2019 moratorium, insurers have only been allowed to ask for genetic data under certain circumstances, including if a client wants more than $500,000 worth of coverage. In its submission to the Treasury inquiry, the industry asked for the cap to remain, at a $1m limit.

In its submission to the Treasury review, the Council of Australian Life Insurers warned a total ban would create the potential for “adverse selection,” which is when a person is “more likely to purchase insurance, insure themselves for larger amounts and to claim but because the insurer is unaware of this, it cannot appropriately price the person’s individual risk”.

The council claims this would increase overall life insurance bills.

Instead, the industry supports what it calls a “near-total ban,” with a $1m limit on claims before a person can be required to provide genetic testing information.

It also wants the government to maintain “the principle that insurers can ask people to disclose, and use as part of the underwriting process, any diagnosis of a condition, even if the diagnosis resulted directly or indirectly from a genetic test”.

Council of Australian Life Insurers CEO, Christine Cupitt, says most people who disclose the results of a genetic test to a life insurer see no result on their final underwriting decision.

But Tiller says any exceptions or limitations would be unacceptable for consumers.

Freelander has had “extensive discussions with the ministers responsible” and is “very hopeful of a positive outcome for patients”.

Support for reform crosses partisan lines, with Liberal MP Warren Entsch and independent senator David Pocock among the many calling for change.

Entsch says “insurance companies, even though they scream poverty, are doing exceptionally well, their profit margins are quite extraordinary”.

“You don’t want them to go through a process where they can eliminate all risk before they take a policy, which is money for jam.”

Pocock is calling for “a full ban, no exemptions, no caps and no loopholes”.

“We can’t replace a patchy code with patchy legislation and say it’s fixed. We need strong laws that provide certainty for people that they can have a genetic test and never be penalised for the results.”

Source: theguardian.com