The price of life: Genetic testing results and the cost of insurance

But with the advent of this field of research and its hurtling evolution, peering into the genomic future is now more an exercise in scientific forecast than crystal-ball gazing. The ability to map the possible outcome of one’s genetic journey is now within human grasp, and with that comes the capacity if not to change, then certainly to manage any foreshadowed risk.

Held to ransom

To deny anyone the benefit of this potentially life-changing information for the sake of the almighty dollar would justifiably be considered unconscionable. Yet according to those driving a recent public health campaign centred on consumer protection, people’s genetic privacy is effectively being held to ransom by the life insurance industry: thanks to a loophole in discrimination laws, life insurers can adjust or refuse cover based on genetic test results.

Dr Jane Tiller, Ethical, Legal and Social Adviser in Monash University’s Public Health Genomics program, is leading the charge. Tiller believes the threat of discrimination by insurance providers is forcing people to choose financial security over potentially better health outcomes.

Tiller, who spent many years as a legal practitioner and also holds a Master’s degree in genetic counselling, says it is because of legally sanctioned discrimination that people are opting not to have the genetic testing that may change or ultimately save their lives.

Nothing short of a complete ban, Tiller says, will restore for patients and consumers the confidence to undergo testing in the knowledge their rights are being protected.

Hope inching closer

Just last month, the hope of legislative change inched closer with the announcement by the Federal Government of a consultation into the use of genetic testing results in life insurance underwriting. While the ink is barely dry on the establishment of this public consultation process, Tiller and her Monash University colleagues have been working concertedly for seven years to bring the issue to light.

Their submission to a 2017 parliamentary inquiry into the overall insurance industry resulted in a recommendation the following year that a ban on genetic discrimination be implemented. In 2019, the industry itself imposed a partial moratorium, putting limits in place, but with no government oversight, Tiller and the Public Health Genomics program at Monash believe the regulation falls far short of what’s needed to protect people adequately.

In 2020, the program received funding for a three-year research study into the effectiveness of the industry’s self-regulated moratorium, during which Tiller and her team consulted with a broad spectrum of stakeholders including the industry itself. The reported findings were released in June 2023, chief among the recommendations therein being a complete prohibition of the use of genetic results in underwriting.

“The industry’s solution was better than nothing,” Tiller concedes, but the government’s announcement in late November of a consultation paper fills her with hope for a long-overdue policy shift.

Australia, she says, has been dragging the chain, with several other countries having already instituted measures to protect their citizens from genetic discrimination by insurers.

“We’re not leading the way on this – we’re falling behind and need to catch up.”

Australian law makes it an offence in many areas of life to discriminate against someone based on disability, including any that might exist in the future thanks to genetic predisposition, but when it comes to insurance, there are exceptions.

As it stands, consumers have a responsibility to provide information requested by life insurers, including genetic test results to which they are privy. Under the Insurance Contracts Act 1984 (Cth), consumers must take “reasonable care not to make a misrepresentation to life insurers when entering into contracts”.  Insurers are then permitted to use that genetic information when assessing cover for a consumer. The Disability Discrimination Act 1992 (Cth) allows insurance providers to discriminate if they’re using “actuarial or statistical data on which it is reasonable for the discriminator to rely”.

Nothing short of a full ban

The newly announced consultation paper offers three options to address the question of what the government’s policy response should be to genetic discrimination in life insurance: the first being to do nothing; the second to impose a ban, either full or partial; and the third to legislate a financial cap similar to the industry’s own self-regulatory measure, under which people are able to access a certain amount of insurance cover before they are required to disclose any genetic test results.

Nothing short of a full ban with no exceptions will suffice, according to Tiller.

Despite the industry’s protestations that a full ban would result in higher premiums across the board, making insurance unaffordable for everyone, there is no evidence that this has been the case in other nations that have prohibited the use of genetic test results by insurers.

“These are multinational companies that operate all over the world,” says Tiller, explaining that many of the countries in which they operate already have bans in place.

“They’re perfectly capable of, and have been, operating in Canada, which has had a complete ban since 2017, and the UK, which has had almost a complete ban since 2001. Many European countries have bans.

“This is not a new idea – we’re not asking for something out of the ordinary in any way.”

A partial ban would also fall short of allowing consumers to undergo genetic testing safely in the knowledge that their right to privacy is fully protected. Time and again during the research process, Tiller and her colleagues heard from consumers whose fear of having their genetic data accessed added another layer of anxiety to an often already stressful circumstance or prevented them from undergoing testing at all.

“Genetic information can’t be put back in the box,” Tiller explains. “Once you’ve had a test, and you know you’re at risk, that risk exists forever. So, if the (insurance) limit or that (level of) protection is changed or shifted in some way, people can’t then do something about that – they have to make a decision today about the rest of their lives and what might be done with their genetic data.”

The adverse selection argument

Insurers have argued – during previous consultations and elsewhere in the world – that not having access to all the necessary data with which to assess risk will result in “adverse selection”, whereby a consumer armed with information about potential diseases, early death or disability will seek much higher insurance cover than would normally be the case. This, insurers say, has the potential to jeopardise the viability of the industry, or lead to much higher premiums across the board for everyone.

Tiller dismisses the argument.

“We just don’t see consumers running out and taking out $10 million life policies, partly because no one can afford that, (but) what they want is the amount of insurance they need. What people do with that (genetic) information is to try to make sure they live longer and take preventive action if they’re able to. They do what they can to avoid their risk, rather than running out and getting huge insurance policies and sitting around waiting to die.”

Tiller has an ally in Dr Simon Longstaff, director of the Ethics Centre, whose consideration of the issue is rooted in the genesis of the insurance industry itself.

Insurance, he proffers, was originally conceived for the purpose of pooling risk across a broad spectrum of people “on the expectation that from time to time, members of that pool would be needing to draw upon it because of the events that occurred in their life”.

“The evolution of insurance, particularly health insurance using genomics, means those who market insurance are now able, in principle, to begin pricing down to the level of the individual genome. And when you start to apply such specific pricing, you begin to challenge the general pool nature of insurance. Instead of it being a risk shared across all, it becomes just the individual’s risk which is priced accordingly by insurers and their underwriters.”

As far as Longstaff is concerned, the only ethical argument from insurers’ perspective is that the more information to which they have access, the more accurately they can price for risk and the less the burden falls on those who are considered low risk.

“That’s a more equitable result,” he concedes, but again points to the general purpose of insurance: to create general pools of risk rather than single pools defined by one’s personal genome.

“But what happens is the commercial interests of the insurer are advanced, particularly in the short term, [and] it doesn’t necessarily confer the benefits that insurance is supposed to provide to society at large, let alone those insured.”

The renowned ethicist believes it may be that our ethical dispositions come at a price.

“There are lots of things that reduce costs, but nonetheless are ethically prohibited, and so making a point about the relative cost of your ethics is probably not the strongest of arguments the insurance industry could make.”

An accurate price for risk?

Another argument insurers make and, according to Dr Jane Tiller, have been making for 25 years, is that banning the use of genetic information denies them the opportunity to accurately assess risk.

Tiller takes particular issue with the word “accurate”.

“There are many problems with the idea of accurately pricing risk with genetic information. One is that even geneticists understand only a fraction of what genetic information means.

“Those of us in the public health space will take everything we possibly can from genetic information and use it to help people improve their health. That burden and standard of proof is very different to the deterministic burden of proof you need to say this person is going to get sick, and therefore we can penalise them.”

Longstaff agrees, pointing to the difference between what certain genetic markers might portend – some genetic conditions more or less assure the development of that particular disease, some more a predisposition that may or may not be realised.

“If you allow this to be used and pricing is taken on a precautionary basis by the insurer, it may not be a fair representation of the actual risk the insured presents.”

Where consumers choose not to undergo a test that would otherwise benefit their medical welfare because it may have to be disclosed to an insurer, this is not in the public interest.

Disclosing information that might render someone uninsurable even though the genetic test shows a mere disposition rather than a certainty is a risk Longstaff believes “must be weighed most heavily in the balance in terms of public interest”.

“That public interest is very much that citizens are able to be unfettered as far as possible in gaining the medical diagnoses they require. That’s partly for the benefit of the individual, but also, in a public health system which is largely subsidised as ours is, we want people to be able to have preventive medicine whenever possible.

“I don’t see that the commercial advantage of the insurers outweighs those public interest considerations, nor those of the individual.”

A crusader in the genomic space

Although her abiding passion for public health and the role of genomics in that space might indicate lived experience, Dr Jane Tiller has no skin in the game, so to speak, beyond her niche skill set and her humanity.

“My clinical understanding and regulatory legal background gave me quite a unique capacity to understand and influence change, and I became a crusader for resolving some of the issues that persist in the genomic space.”

It’s a crusade she believes is one for all Australians, including those in the legal fraternity, to wage.

“Every Australian will, in the next 10 years or so, be offered genetic testing, and we are moving very quickly from it being diagnostic for people who are already sick, very much into preventive medicine, and being able to find out what we might have risks for and do something about it,” she explains.

“This will be something that impacts the life of every Australian, and if our consumer protection is not sorted every Australian will be faced with that lack of protection and what might happen with their genetic data.”

As tempting as it may be to think this is an issue peculiar to those who are at genetic risk, and as attractive as is the lure of less expensive insurance, Tiller warns against the ostrich approach.

“We are all at risk of disease and most people only take that position (of complacency) because very few people yet know what their risk is. Most people think, ‘I’m not going to be the person with, for example (the breast cancer gene) BRCA’ – (they think) ‘I’m low risk’.

“In fact, one day when we all know what we’re at risk of, we will all be saying we need protection – so we all get insurance and we are sharing the risk among the population – which is what life insurance is supposed to do,” she says, echoing Simon Longstaff’s thoughts on the original purpose of insurance, which, he says, has been lost in the pursuit of profit.

What role for the legal profession?

“That’s a good question,” says Tiller, who spent the best part of a decade as a corporate litigator before turning her attention and skills more to the genomics space.

“This is a significant health policy issue but also a big reform issue in terms of consumer protection and human rights, and there’s a few things the legal fraternity can do.”

With the government now calling for Australians’ views as part of the public consultation process, a process with a closing date of 31 January 2024, Tiller believes law societies, the bar and individual lawyers who have an interest as both professionals and human beings have powerful input to offer.

“I would encourage people in all of those capacities to consider making submissions.”

The questions contained in the consultation paper take several forms, she says, from being directed to consumers with lived experience to those aimed at the medical or health community, and questions targeting the mechanism of regulatory reform and enforcement.

“Some of those questions would be very appropriately answered by people in the legal community,” says Tiller, also pointing to a page she has established, by the Public Health Genomics program at Monash University.

“We’ve created this for people who don’t want to answer all the specific questions in that long-form way but do want to email their views. They can just enter their text and can send it off using that page, or via the email address.”

“Everyone needs to sit up and pay attention because what the Government does now will affect their future rights and how they will be protected when it comes their turn to consider genetic testing.”