Hhereditary colon cancer claimed the lives of three women in Dwayne Honor’s family. They had Lynch syndrome, a genetic condition that increases the chances of developing certain cancers. But he never expected it to affect his insurance.
The Bundaberg resident and members of his family have spent years participating in university research to help understand and manage the common condition. Over one in 280 people is believed to have it.
As genetic testing is becoming more accessiblemore people are taking action to detect Lynch syndrome and similar illnesses, but insurance companies can sometimes get the same information as well.
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 that his children will have the same problem and he has 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 colon cancer screenings, feels that he is “being discriminated against simply on the basis of 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?”
Pediatrician and chairman of the parliament’s health committee, Mike Freelander, agrees it is a form of discrimination. The committee recommended barring the insurance industry from accessing people’s genetic test results as part of a crackdown on the discriminatory use of health data.
But the life insurance industry is fighting a blanket 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 caused by genetic variations.
Freelander says “genetic discrimination” – where life insurers charge extra or deny coverage to people who have a proven genetic risk – discourages people from testing in the first place.
“We’re really at a tipping point now where we have to decide who should have that information and how it should be used,” he says.
“Some businesses – especially insurance companies – really want to get their hands on 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 is just no responsible way to regulate a private company to act responsibly with him.
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 who wants to prove that they do not have a condition that runs in their family.
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Jane Tiller, a Monash University researcher who led the campaign for reform, is concerned that the insurance industry is trying to persuade the federal government to accept a false compromise.
Since a 2019 moratorium, insurers have only been allowed to ask for genetic data under certain circumstances, including if a customer wants more than $500,000 in coverage. In its submission to the Treasury inquiry, the industry called for the cap to remain at a cap of $1 million.
In its submission to the Treasury review, the Council of Australian Life Insurers warned that a blanket ban would create the potential for “adverse selection”, which is when a person is “more likely to buy insurance, expose themselves to larger amounts insured and to claim, but because the insurer is not aware of this, it cannot properly price the person’s individual risk”.
The council claims this will increase overall life insurance bills.
Instead, the industry supports what it calls a “near total ban,” with a $1 million cap on claims before a person can be required to provide information about genetic testing.
It also wants the government to “maintain the principle that insurers can ask people to disclose and use any diagnosis of a condition as part of the underwriting process, even if the diagnosis resulted directly or indirectly from a genetic test”. .
Christine Cupitt, chief executive of the Council of Australian Life Insurers, 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 restrictions would be unacceptable to consumers.
Freelander has had “extensive discussions with the ministers responsible” and is “very hopeful of a positive outcome for patients”.
Support for reform cuts across party lines, with Liberal MP Warren Entsch and independent senator David Pocock among the many calling for change.
Entsch says “insurance companies, even if 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 risks before taking a policy, which is money for jam.”
Pocock is calling for “a complete ban, no exemptions, no caps and no loopholes”.
“We cannot replace a patchy code with patchy legislation and say it is fixed. We need strong laws that give people certainty that they can undergo a genetic test and never be penalized for the results.”
