There are now more than 7500 known human genetic mutations linked to disease. More are being discovered every year. As testing becomes less expensive, it could mean a future where people can use genetic data to prevent conditions occurring. It may mean surgery is needed or a change in lifestyle. Either way, it may mean a life can be saved.
Having a test is still a big decision.
Not everyone will want to know their risk of a certain disease is high, even if it gives them the chance to act.
But there’s another barrier. A financial one.
It’s because insurers can currently increase premiums or decline cover altogether based on someone’s genetic profile.
Rebekah Johnstone is a mum who’s furious about it, because it affects her daughter Lucy.
Rebekah had a genetic test last year that confirmed a BRCA gene mutation. It means she has a heightened risk of serious breast and ovarian cancer that can be passed down the family line.
Rebekah already had insurance when she found out, but her daughter faces a decision about testing knowing it could affect her future life insurance, and health insurance. As Lucy says “one day it might become really real for me, it’s scary”.
Benefits of testing
Rebekah’s cancer specialist Dr Susie Mourton is a firm supporter of genetic testing.
“Knowledge is power. Knowing you have a BRCA gene mutation means you can make decisions that can dramatically reduce the risk of developing cancer, whether that’s by extra screening or by having risk reducing surgery.”
This was the case for Rebekah.
Once she knew she was at such high risk, she had both breasts and her uterus and ovaries removed. It’s a huge step, but her risk of cancer spreading was so high, that’s it’s likely these steps saved her life.
But what now for her daughter?
Rebekah doesn’t want her to have her insurance options limited, so she asked Fair Go to look at why genetic discrimination was allowed and what could be done about it.
The Human Rights Commission has said that insurers can request applicants to disclose the results of any genetic tests, but cannot require applicants to undergo genetic testing.
Fair Go found out which insurers request the information. We looked at four of the main health insurance providers.
Unimed doesn’t ask for any genetic test data, saying “we firmly believe in treating all individuals fairly and without discrimination based on genetic predispositions”. Some of its policies even fund the cost of genetic tests to assist clinicians to develop targeted cancer treatment. Once this information was received, it doesn’t impact a customer’s cover in any way.
Southern Cross, NIB and AIA all required new customers to provide genetic test results.
Southern Cross said any further screening or tests relating to the mutation won’t be covered, but the insurance plan would still cater for treating the condition if it develops.
NIB and AIA both said the genetic information may impact the cover offered. Premiums could be higher, or cover could be completely declined.
Opposition to genetic discrimination
Many health professionals and researchers in the field of genetics are strongly opposed to this type of discrimination. It’s because research in New Zealand has shown up to 30% of people would choose not to be tested because of the impact on insurance.
Mourton is appalled at that. She specialises in ovarian cancer.
She says it’s a travesty because “there are no good screening tools for ovarian cancer at an early stage, so most of the time ovarian cancer is diagnosed at an advanced stage where cure is unlikely. So if we can identify women at higher risk we can do risk-reducing surgery”.
An alliance of professionals in New Zealand called Against Genomic Discrimination in Aotearoa (AGenDA) is calling for a complete ban on the use of genetic information by insurance companies.
It’s spearheaded by Professor Andrew Shelling from the University of Auckland. He’s a specialist in genetics and says “these are really life-changing tests that are important to someone’s future”. He adds that AGenDA has been pushing for this change for some time — “we’ve been talking to the insurance industry body, the Financial Services Council … and we’re working towards a moratorium with their support”.
Fair Go wanted to discuss this with the Financial Services Council (FSC) to get an idea of how far this work had progressed and when a moratorium might come into place. It declined an interview, but sent a statement acknowledging the issue is important and complex and saying “we are engaging widely across the community with many key stakeholders. We look forward to sharing these insights once we have finalised our position”.
None the wiser, Fair Go looked across to Australia’s experience.
Australia considers total ban
Australia has had a moratorium in place since 2018.
Campaigner Jane Tiller says it hasn’t worked. She’s the ethical, legal and social advisor in public health genomics at Monash University in Melbourne and has spent the last seven years fighting for patient rights.
It felt like a win to get insurance companies to agree to the moratorium back in 2018, but it has since become clear that there are several drawbacks to this approach.
For a start, it only applies to life insurance policies below $500,000 (AUD) plus “people still have low trust that insurance companies will stick to it, and it’s not enforceable”. She says a government change is required to ban insurers being allowed to discriminate on this basis.
Such a ban is on the cards. A consultation ended in January this year, with Treasury receiving more than a thousand submissions. A response is expected shortly and may result in a total ban, as already exists in Canada and the US.
Tiller is surprised New Zealand is so far behind. She thinks the Government and insurers should look to the research in Australia that has detailed the disappointing impact of a moratorium there.
“They know other countries deal in complete bans and I think they know it’s coming. The Government is allowed to regulate and it’s time for them to do so.”
We need a political champion
A key driver to push through change in Australia was getting political champions on board. In Canberra, the Chairs of the Human Rights Committee and the Health Committee both took up the challenge, throwing their support behind a total ban.
Fair Go felt it could be helpful to see if any politicians here would be interested. We contacted Labour MP Jan Tinetti as she’s publicly spoken about her own battle with breast cancer. Turned out she’d been made aware of this issue just days before.
Following our discussion she spoke to Labour’s Women’s Caucus and was supported to take action.
“I can look at legislation to see if it needs to be changed, I can talk to the current Ministers and I can also look to see if there is potential for a Member’s Bill to raise awareness.”
She plans to do this in partnership with those affected.
Fair Go also asked the Government about its plans.
The Minister of Commerce and Consumer Affairs, Andrew Bayly, says he introduced the Contracts of Insurance Bill to Parliament last week and is currently receiving submissions. This is another potential avenue for change to be realised.
Rebekah and Lucy knew there wouldn’t be a ban overnight, but they’re encouraged that there is momentum for the rules around genetic discrimination to be tightened.