STEPHEN JONES:
The advances in medical technology over the last few decades, particularly in the area of genetic testing, means that Australians now have available to them some of the tests and technologies which enable for them to diagnose, to prevent, to get treatment, including personalised medical and treatment plans, that just weren’t available to us decades ago. As a government we want to ensure that people are encouraged to take control of their own health, to take control and take access to these sorts of technologies. As many of you would know, the last year or so I’ve been working with medical and community advocates on behalf of the government to look at some of the obstacles that exist for people getting access to these technologies.
Our policy priority is to ensure people can have access to the genetic tests that they need without fear of repercussions or fear that they’ll be discriminated against when they’re accessing financial services. So I’m delighted to announce today that the Australian Government will initiate a total ban on the use of predictive genetic tests when Australians are attempting to access life insurance products. I do this on the basis of several years of campaigning by community activists, health industry bodies, and I do it with their full support. I’m also delighted to be able to confirm that this announcement has the full support of the life insurance industry. And I’ll be introducing a number of people to you in a moment. I think it’s important as we make these important steps that we bring the community together and we bring industry and government together. It’s a hallmark of our government that that’s exactly what we want to do.
There’s been a lot of people who have been involved in campaigning and pushing for this announcement and this reform. I want to introduce in a moment Dr Jane Tiller from Monash University, who produced – did a landmark study and produced a landmark report. And if there is a member of the press gallery that Jane Tiller hasn’t spoken to about this issue, I’ll be flabbergasted. I know there’s not a member of parliament that Jane hasn’t spoken to about this issue. So I’m delighted that Jane is here today to celebrate the culmination of her great work. Also delighted that I’m joined by Christine Cupitt, who is the CEO of the Australian Council of Life Insurers. We have had a great dialogue on this issue, and I’m delighted to say that they’ve taken a progressive approach to this and understand that our interests aligned. So I thank you for being here today and I thank you, Chris, for the constructive dialogue we’ve had with your industry. Probably one of the most important voices that you’re going to hear from this morning is Cara Ryan. Where are you, Cara? Right there fantastic. Cara Ryan, she’s rushing back to Melbourne today to go back to work at her day job at the ANZ Bank, but she’s come up to join us today to share with you her own personal story and what this means for her today. I’m also going to introduce you to Christine Cockburn, who is the CEO of Rare Cancers Australia, who’ll talk a little bit about the importance of this announcement and access to genetic testing for the communities that she represents.
Before I do all of that, I want to pay tribute to some of my parliamentary colleagues who’ve joined me here today, including Assistant Minister Julian Hill – who shared with many of you his own family experience with this particular issue, Senator Deb O’Neill – who has also shared her personal and family experience with this. I know Tania Lawrence who may not have shared her story with you, but the member for Hasluck has a similar family story, as does Melbourne PM Josh Burns. Mike Freelander, Dr. Mike Freelander, member for Macarthur, has been a tireless advocate before he even got to parliament on these issues. And I want to pay tribute to the work that he’s done on this. And my friend the member for Boothby, Louise Miller‑Frost, has been a tireless advocate for this. Those people have joined me here today, and I’m sure they’ll be wanting to talk to you guys after this press conference. But I want to pay tribute to their work. I’ve spoken earlier to Dr Monique Ryan and Zoe Daniels – in fact, there’s not a member of the crossbench who hasn’t advocated on this issue to me as well. I pay tribute to Senator David Pocock who has also been in regular communication with me about this issue. So that’s enough from me at the moment. I really want to introduce you – or re‑introduce you to Dr Jane and allow her to say a few words and then we’ll work through some of our other colleagues. Thanks so much.
DR JANE TILLER:
Thanks so much to the minister and to the government for this really momentous announcement. And this is such a significant day really for all Australians. This is something that I’ve worked on for 8 years, and people before me have worked on this for decades. And it’s amazing to see this coalescing into this amazing announcement that’s been made today. We have heard through our research again and again of the impact that this kind of fear has on people. People are afraid that if they have genetic testing they won’t be able to get life insurance. And after this legislation is passed, people won’t have that fear and people will be able to make decisions about genetic testing based really on their health decisions and not on their fears about their financial future. And I’m really grateful that we’ve been supported by such a great number of advocates, of crossbench members, of the opposition even and the Labor backbench who have really tirelessly worked on this with the minister. He did a great job of engaging with the community. Very early on it was clear that he understood the importance of this issue and he did a really broad and varied stakeholder engagement. And I think this really reflects the attitude of all of Australia and what came out of the consultation in terms of what Australia wants.
It’s an amazing day. I’m so happy that it’s a full ban, and that will give the consumers the certainty they need to make this decision without worrying about what the exceptions might be or what might happen to their genetic data. I also want to say the amount of work that’s gone in from across the political spectrum has been amazing. As mentioned, David Pocock and Kylea Tink gave a press conference on this, and that would be really important for getting this legislation through in a timely manner.I want to thank everyone for all of their work, and on behalf of all of Australia, I want to thank the Assistant Treasurer and the government for what they’re doing here.
CARA RYAN:
Hi, my name is Cara Ryan. I’m 30 years old and I have a variant BRCA2 gene. How I found this out was that I was a participant in the Monash University study 2 years ago, where they were testing approximately 10,000 people where I was fortunate enough to be selected. I have breast cancer in my family, but I wouldn’t say it’s a strong history. Having genetic testing was something that I have always wanted to do but could not afford to have the test done. When Monash University were doing this study where I could get tested free‑of‑charge, a part of me felt relief and excitement that I would be able to find out if I carried a harmful gene. But then a serious concern that if have a positive result I may be discriminated against for things such as life insurance. I had to make a choice between my health or protecting my life financially. And I chose my health and proceeded with the test.
Finding out that I carry this variant in the BRCA gene has changed my life forever. Genetic testing has given me the power to put plans in place before an illness takes hold. Knowing that I have this BRCA variant has been an extremely powerful tool to take control of my health. Today as I stand here I’m not just standing here as a patient but I am standing here like every other person that is yet to walk my path. When I decided to proceed with having genetic testing I was faced with a difficult choice. With today’s announcement I don’t have to worry anymore, and neither does any other Australian that wants to have genetic testing but was afraid to do so because they might be discriminated against. On behalf of myself, my family and all other Australians, thank you.
CHRISTINE CUPITT:
Good morning. Thank you, Cara, for sharing your experience. The Council of Australian Life Insurers fully supports this announcement, which has come after more than 12 months of engagement with the government. It’s good for Australians and their families. It’s good for industry and it’s good for the government. Life insurers want people to access the information they need to make informed choices about their health. We’ve never wanted to do anything to discourage people from taking a genetic test and managing their health in a preventive way. Life insurers have never and would never require someone to take a genetic test, and once cover is in place taking a genetic test doesn’t affect that cover. But we recognise that all Australians should feel confident about taking genetic tests and not worrying about getting life insurance in the future.
In 2019, the industry put in place an industry standard controlling the use of genetic tests by life insurers. But a lot has changed in 5 years. Genetic testing is much more common in the community, it’s cheaper to access and it’s more effective in helping people manage and even prevent hereditary conditions. We’re very pleased that the announcement includes a 5 year review of the legislation. This review will be important to ensure the legislation keeps pace with the way genetic testing is used in the future. Australian Life Insurers support this announcement, and we look forward to playing our part in making sure that people have the confidence they need to take a genetic test and proactively manage their health.
CHRISTINE COCKBURN:
Good morning. Rare Cancers Australia welcomes this bold policy reform that is about Australians having fairness when they already face significant adversity. When barriers like discrimination are removed people like Cara can access the very best scientific interventions, like genetic and genomic screening. This is a game‑changer for those at risk of or living with cancer, and it’s an important move towards equity and fairness. And we thank the minister.
JONES:
Thanks so much, Christine Cockburn from Rare Cancers Australia. Happy to take questions.
JOURNALIST:
Minister Jones, one on this and one on another topic. Bans are only as good as their enforcement and punishment. Can you just give us some insight into, one, how this will be enforced and, 2, insurance companies found to have breached the ban, how will they be punished, what are they up for? And then just on another topic: Are you considering a levy on social media companies right now?
JONES:
Let’s deal with those in order, Ron. Firstly, ASIC as the financial services industry regulator will be responsible for enforcing these provisions. There may be other aspects of Australian law that will enforcable it as well, but in terms of the financial services industry it will be ASIC who will be the regulator. When we get to drafting the details of the law we can ensure that we’ve got appropriate penalties in place. And can I just make a general point, you’ve heard the address from Chris from the Council of Australian Life Insurers. I think this is one we can genuinely say it’s a Team Australia moment – everyone is on board. Yes, there’ll be fines and penalties in the legislation. It’s my hope and expectation they’ll never be used.
In relation to the broad raft of reforms that the government has on foot in the area of social media and the digital economy more broadly, there is no doubt that the digital economy digital marketplaces, social media platforms, have transformed the way Australians communicate, the way they do business, the way they access goods and services and there’s no doubt that Australia has benefited from the productivity uplift associated with that, the reduction in costs in communication. There’ll be some amongst you who’ll remember what the cost of an overseas call used to be. That call is now done overwhelmingly on a social media platform. So there’s no doubt that there are benefits. But there are also harms. And I think the Australian people expect the Australian Government to ensure that we are protecting Australians against the obvious harms that are associated with the digital economy. There are social harms. There are economic harms and there are democratic harms. And the government has a job of work addressing each of those. Many of those announcements have been made over the last couple of weeks. We will ensure that Australia asserts its sovereignty.
We want the benefits of social media, we want the benefits of a digital platform, but we also want to ensure that the Australian Government can and is able to enforce the laws that operate in Australia. And if these businesses, whether they’re housed here or operating from Australia – overseas are providing services to Australians and in Australia, that they follow Australian laws. It’s not too much to ask for. It’s a pretty basic obligation. So we’ll have a range of reforms. I’ve already advised that later this week I’ll have a significant piece of legislation out for consultation around scams prevention. A significant uplift. Michelle will be introducing in the parliament later this week, of course, an important piece of legislation dealing with some of the demographic harms. We’ve had an important conversation around the access to social media by minors in Australia and foreshadowed laws in relation to this area. We’ve had the Attorney‑General Mark Dreyfus, very forthright in the work that he’s doing around the use of online platforms for sexual and child abuse. We’re determined to advance this agenda and we’re determined to ensure that Australian laws are obeyed and enforced for the protection of Australians. I’ll have more to say in the near future about funding mechanisms for all of these things. But you can be absolutely certain that we are adamant that we will assert our sovereignty for activities that occur in Australia.
JOURNALIST:
I have a question about the announcement that you’ve just made, but it does sound like you’re not ruling out social media platforms levy?
JONES:
I’m not going to speculate on matters that are before government committees at the moment. What I will say is we are determined to assert our sovereignty. We are determined to ensure that the economic, social, and democratic harms come with the great benefits of social media and digital platforms are protected against.
JOURNALIST:
Can I ask: when do you hope – in relation to this announcement, when do you hope to have this legislated and enacted and starting? When do you think that that will be? And also – maybe this is for the insurance industry, maybe for the minister – what are the implications for people who may have been knocked back for insurance on the basis of previous testing or given a very restrictive policy or a very expensive policy? Do they get to come back now to the industry and seek a different result?
JONES:
Great question. I’ll invite Christine Cupitt from CALI to answer the second part of that question. In relation to the first part, it’s our aim to have the legislation in the parliament this term.
JOURNALIST:
But – so when do you think it would be in – functional?
JONES:
Our aim is to have legislation in the parliament this term. We want to see this operating as soon as possible. But can I add to that by saying it is my expectation that most if not all players within the industry will move on a voluntary basis to ensure that these provisions are operating in the context that they offer from here on in. But I’d invite Christine.
CUPITT:
Good morning. We expect that this legislation would operate prospectively, and the detail of that needs to be worked through. But we also expect that under the framework people would be able to resubmit applications, and each life insurer would then need to consider that on the basis of their own risk policy, but under the framework which bans genetic tests.
JOURNALIST:
What does that mean in practicality for people who are wondering whether they can come back?
CUPITT:
Well, we need to work through the detail of the legislation in how that will operate. But certainly our expectation is that people would be able to remake or resubmit applications under the new framework.
JOURNALIST:
But it sounds like it might be at the discretion of each insurance company whether they offer a different policy, is that right?
CUPITT:
Life insurance in Australia is risk‑rated, and I think the community expects that. And the approach that each insurer take is an individual business decision for them but also in compliance with the law and the expectations of the community.
JOURNALIST:
But then the ban is not functional for people for people who have been affected before it takes place, no?
CUPITT:
We fully anticipate that the legislation will operate prospectively but that people will be able to remake their applications, not needing to disclose –
JOURNALIST:
I’m sorry to go on about this, but I’m just not clear. Are you saying that there’s no guarantee that people who’ve been knocked back to date based on predisposition for disease but no actual disease will get a benefit from this change and be able to get full life insurance without prejudice?
CUPITT:
There’s an absolute guarantee that life insurers will comply with the law and that they won’t require people to disclose genetic tests when making their risk assessment and their application. That’s an absolute guarantee.
JOURNALIST:
Perhaps I might expand on Karen’s question then: would you destroy any materials around genetic testing that you currently hold by people that have already disclosed?
CUPITT:
Life insurers will need to consider the operation of the legislation and how that might apply to information that’s already collected. But the important thing is that we continue and currently comply with all the privacy legislation and all the recordkeeping legislation that applies to financial services, and whether that requires us to continue to hold that information is something that we need to work through.
JOURNALIST:
Maybe a question for the minister then: what’s the government’s position on how this change should affect people who’ve previously been knocked back and whose records are – these tests are currently held with insurers? Should they be destroyed and should these people be able to start again with a clean slate?
JONES:
A couple of things to say about this. Most life insurance contracts are annual contracts, renewed annually. So somebody renewing under the new law, the contract would have to be offered in accordance with the new law. It is the government’s very firm belief – and it will be reflected in the law – that the intent of that law is to ensure somebody is not discriminated against because they have had an adverse genetic test. It will be a very firm position, and that will be reflected within the law. I think that answers Ron’s question.
JOURNALIST:
You mentioned some support from a few of the independents. Do you think that support will be reflected when the legislation goes through and you’ll be able to get that crossbench support, or are you anticipating some negotiation with crossbench, the Greens, the independents and maybe even the opposition?
JONES:
Look, I just hope that this is one of these things that we have a Team Australia moment on. I don’t see the parliamentary friendship [inaudible] against this stuff. So I’d hope that this one just sails through the parliament. The sort of goodwill and unanimity that we have shown in our conversation with you this morning should be reflected across the entire parliament, including the fact that we’ve had – and I’ve paid tribute to the work of crossbenchers, such as David Pocock, Monique Ryan, Helen Haines, Kylea Tink; Zoe Daniels, all of them. So, this is not a red‑blue, green‑blue, red thing. This is a Team Australia thing.
JOURNALIST:
Ms Ryan, could I ask about the moment that you found out that you had that genetic variant. What kind of emotions were you feeling? What thoughts were going through your head, and what does this now offer you?
RYAN:
Yeah, I was scared. It was a moment where I felt very confused. I didn’t know what I was going to do with this information. But with the support of genetic counsellors providing me factual information I was able to take the next steps in how I managed having this genetic variant.
JOURNALIST:
And how do you feel now with this total ban coming in?
RYAN:
This total ban is life‑changing for myself, who has found out that I have this genetic variant. But it’s also life‑changing for the people that didn’t want to take a DNA test because they thought that they were going to be discriminated against. This will save lives.
JONES:
Thanks so much. Thanks for your courage in standing up and sharing that with everyone.
JOURNALIST:
Tom Ravlic from the International Tax Review, Professional Planner and The Mandarin. Just a quick one on one of my favourite topics: you’ve had a disallowance defeated in the Senate yesterday. You’re in the middle of negotiation with the bodies representing tax advisers to refine the determination that you signed off in back in July. Have you got anything to say about the status of where things are at at the moment?
JONES:
Look, we’ve in the last week had a number of really productive meetings with all of the accounting bodies – 6 or 7 of them I believe – all of the accounting bodies. Productive, good‑faith discussions. I’m glad the disallowance motion was seen off because, frankly, I’m more motivated by ensuring that we work with the accounting profession to ensure we get an uplift in professional standards and protection for consumers who have tax services. But let’s not forget why we embarked on this journey. Two years ago Australians were scandalised when they learned that inside PwC, the greatest corporate scandals of the last few decades has been exposed, and it put a spotlight on the fact that our laws and our penalties, and our disciplinary procedures for the tax profession were not up to scratch. And the government was determined to ensure that they are.
JOURNALIST:
Could you give us a sense for what today’s announcement about the ban will mean for the future of genomics medicine in Australia and medical research more broadly?
JONES:
Yeah, look, I’m always a bit modest talking – he’s gone; I thought Mike Freelander might have still been – it’s a division. We’re backing it. We’re backing genomic testing. We’ve put about $70 million in. And with those brief comments, talk to you soon.
TILLER:
I appreciate the minister can’t stay, but we’re really excited about with this means for the future of genomic research. You know, Cara talked about her experience with the DNA screen study. We’ve just completed the pilot study of DNA screen, which is a test – a screening study of 10,000 young people for genes like the BRCA gene, medically actionable conditions that people can do something about. We want the government to fund the next stage of that study. And we want that to become a screening program for the whole of Australia, to offer this information to everyone. The biggest barrier standing in the way of that has been life insurance discrimination, and now we’re able to say that barrier has been removed. The government can fund screening for all Australians and they can make that decision without worrying about discrimination. And that is a huge, momentous step for the future of medical research and screening and preventive health for Australia.
JOURNALIST:
This might be a request for Christine, if you’ve got a moment. So you mentioned that in 2019, life insurance – the life insurance industry agreed to a set of standards, including not to use genetic tests for insurance applications below a certain threshold. Could you tell us a bit about what some of the issues might have been with this agreement and how this ban might fill some of those gaps?
CUPITT:
Australia’s life insurers fully support today’s announcement. In 2019, the industry very carefully considered the risks that have been articulated by stakeholders and also the approach that life insurers take in providing cover. But a lot has changed in 5 years. Genetic testing is far more common. It’s more extensively used and it’s much better at helping people manage or even prevent hereditary conditions. So we think now is the time for strict regulation and we look forward to supporting the government in implementation.
JOURNALIST:
Was there any kind of issue with applying those standards when they were set 5 years ago?
CUPITT:
The industry took very seriously the industry standard that was put in place and complied with that standard. But it is important that we recognise the changes in the environment, in the genetic testing environment, and we fully support strict regulation.