Julie Owens (Parramatta, Australian Labor Party, Shadow Parliamentary Secretary for Small Business) Share this | Link to this | Hansard source

The National Cancer Screening Register Bill 2016 and the National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016 are important bills (1) because they do something very important, but (2) because they highlight the incompetence of the government in implementing something as important as the National Cancer Screening Register. They are doing something that is important and, once again, they are doing it badly. In speaking today I want to highlight both those sides: what is important about the register itself, and the process that the government have gone through that has got them to the shemozzle that they are in today with this legislation.

Firstly, the Cancer Screening Register itself will replace nine existing registers: the National Bowel Cancer Screening Register and eight state and territory registers for the National Cervical Screening Program. Labor supports the establishment of a cancer register. It will reduce duplication and improve the prevention, identification and treatment of cancer in Australia. Because it will link through to GPs' desktops, GPs will be able to see the entire cancer screening history of their patients. Labor also supports the improvements to cancer screening programs that the new national register will enable. The National Cervical Screening Program will move from a two-yearly pap test to a five-yearly cervical screening test. This implements recommendations that were actually made by the independent Medical Services Advisory Committee, and this is expected to prevent an additional 140 cervical cancers a year. As with so many cancer prevention strategies, none of us will know the names of the people who were saved by this, but it is an incredibly important move. The National Bowel Cancer Screening Program will accelerate its transition to biennial screening—again, incredibly important—with Australians aged 50 to 74 screened every two years by 2020, instead of 14 years late by 2034. We know from clinical trials that biennial screening can prevent between 300 and 500 deaths per year. Again, it is incredibly important that this register be established, and it is a good thing.

But when it comes to the implementation itself we really do get a completely different story.

The register will hold Australia's most sensitive health data, like the results of cervical and bowel cancer screening, and we need to get it right. On the Labor side, we are incredibly concerned that the government has already carried out moves to outsource the register to Telstra, to privatise the keeping of what is incredibly important data.

I am going to leave aside the dishonesty during the election campaign, when they were declaring strongly that they would not outsource Medicare, when, four days before they called the election, they had already signed a contract with Telstra to outsource the cancer register. Let us leave that aside. Let us leave aside the fact that they planned to make a major announcement during the election campaign and then, when it became clear that the people of Australia did not want their medical services to be outsourced, they decided to cancel that announcement. Let us just that aside and deal with the process itself that got us to this point.

It is important to remember that the announcement for the cancer screening register was not made in the 2016-17 budget. It was actually made in the 2015-16 budget, so it was made over a year and a half ago, and two years before the register was due to come online, effectively, on 1 May 2017. So, in the announcement in 2015-16 they gave themselves two years to get the register, the legislation through the parliament, have it established, sort out its processes and get it right. And it is incredibly important that we do get something right when such sensitive information is held on the register. But what we found was that through the year 2015-16 to 2016-17 there was no legislation to establish the cancer register. It was not put forward. But what happened instead was that four days before the calling of the election a contract to manage the register was let to Telstra. So, roughly a year after they announced they were going to have a register, they let a contract to Telstra to manage a register, before the legislation had gone through parliament.

I think every business out there would wonder what is in that contract, because at that stage the legislation to establish the register the contract was for had not passed the parliament and we were heading into an election the government was not guaranteed to win. If we were honest, we had no idea during the election campaign what the parliament would look like, yet the government was letting a contract to a major corporation for a register that did not exist and had not passed the parliament. Heaven knows what is in that contract, but it must be an interesting one, with a lot of blank spaces.

The government now has to rush the bill through the parliament so that Telstra, which has the contract, is able to deliver the cancer register by 1 May 2017. You need to understand there that Telstra has no experience in the managing of this kind register. In fact, there is not a single cancer register in the world that is managed by a private entity; they are all managed by public entities, as they are in Australia. So Telstra has no experience whatsoever in setting up or managing a register of this kind and is busy at the moment running around to the existing holders of the nine registers trying to poach their staff and borrow their expertise so that they can actually meet this deadline. So we are now looking at a government that is trying to rush the legislation through the parliament to meet a deadline they have, by their own incompetence, shortened to a ridiculous extent.

When Labor and the crossbench referred the government's bills to the Senate inquiry, the health minister, Sussan Ley, accused Labor of a hysterical tirade. But in an embarrassing rebuke of the government their own privacy and information commissioner made six recommendations to fix the legislation to the Senate inquiry. Some of the loopholes identified by the commissioner were really alarming. For example, the government's bills, as drafted, may allow the register operator to collect all Medicare claims information on people who are on the register, and not just the information that relates specifically to the cancer register. Under the government's plan this would allow Telstra to see all the health services that a person had received, including in sensitive areas like mental health and sexual health. So that is one really alarming area of privacy that the commissioner alerted the government to.

Last week Labor proposed nine amendments to improve the government's legislation and the government has come kicking and screaming into accepting many of those amendments. We understand the government will move a series of amendments that will meet many of the demands that Labor has made, because they are actually quite reasonable demands. Arguably, if the government had spent sufficient time on getting this register right over that year where it sat idle, they may have handled these matters themselves and may have done the appropriate consultation to handle these kinds of really quite obvious problems with the legislation.

Yet, the government still cannot get it right. The legislation is still absolutely full of holes, so Labor is moving three more amendments that the government refused to accept. Those amendments fall into three areas. First, relating to Telstra itself, to limit the operation of the register to a not-for-profit organisation or a government agency. I will come back to this. Second, is mandatory disclosure, so that individuals are notified when their most sensitive health data is breached. Third, an amendment to increase the penalty for unauthorised use of or disclosure of information. On the Labor side we would think that these are three really obvious amendments that will have the support of the people of Australia. First, that something as sensitive as a cancer register should be held by a not-for-profit organisation or a government agency. Second, that if data is breached individuals should be notified. Third, that the penalties for unauthorised use of or disclosure of information are substantial, substantial enough to ensure that a private company would be extremely concerned that such unauthorised disclosure did not happen.

I will come back to the detail of those amendments. The Telstra amendment, which limits the operation of the register to a not-for-profit organisation or a government agency is there for a very simple reason. Telstra has never operated a register like this. In fact, no for-profit corporation anywhere in the world does it. It is new territory and it is extremely sensitive information for the government to be using in a guinea pig approach for Telstra's first foray into health.

It is going to contain extremely private health information that has never been handed over to a for-profit company. This includes the Medicare number, the Medicare claims information, the preferred GP, HPV vaccination status, screening test results, cancer diagnosis—incredibly sensitive information which has not, in Australia, been held by the corporate sector before today. So, Telstra will know things like whether you have had a cervical or bowel cancer test, whether you have a precursor to cancer or genetic markers that may lead to cancer or whether a woman has had a hysterectomy or a partial hysterectomy—incredibly sensitive information.

In fact, the Senate inquiry revealed that it is not just the Labor Party that is concerned about keeping this kind of sensitive information in the hands of the corporate world. The Australian Medical Association, the Royal Australian College of General Practitioners, and other experts share Labor's concern about outsourcing the register to a for-profit corporation. Labor's amendment, in clear English, would ensure that the register would have to be held by a government agency or a not-for-profit. Incidentally, not-for-profit organisations and government departments are currently quite successfully holding the nine registers that currently exist.

The second amendment concerns mandatory disclosure so that individuals are notified when their most sensitive health data is breached. Under the government's legislation, if and when there are data breaches, Telstra has to tell only the Department of Health. That is it. We understand that the government will now accept Labor's amendment to ensure that the Privacy Commissioner is also notified. That is an improvement, although, as I said earlier, the Minister for Health originally said we were being hysterical about this, but they have agreed to that. But it is really not good enough: if a person's health privacy is breached, that person should be advised of that breach. So that is the second amendment, and it is consistent with our position across all portfolios. Unfortunately, the government has a history on this. When sensitive Medicare and PBS data was breached the government took weeks to come clean. So this is an important amendment for protecting consumer rights.

The third one is the penalties amendment. Under the current bill the penalty for recording, using or disclosing information without authority is $21,600—for Telstra—for misusing or disclosing information without authority. In the six months to December 2015 Telstra reported a profit of $2.1 billion. It is hard to see how, for a corporation of that size, a penalty of $21,600 would be a sufficient deterrent to ensure that the corporation had data security in the forefront of its mind. First, they have to tell only the Department of Health—and now, because of the amendment, the Privacy Commissioner—and they get fined what is a drop in the ocean for a corporation the size of Telstra. The former Secretary of the Department of Health, Stephen Duckett, said:

The automatic consequences of release of data – inadvertent or not – must be made so great that any risk-management matrix will ensure the organisation and its managers always have patient privacy at the forefront of their mind.

Even stakeholders that are generally supportive of the government's legislation, such as Pathology Australia, have called for a review of the fine for offences to ensure that they are an appropriate deterrent.

Under the Crimes Act 1914 a court can impose a penalty of up to five times this amount on a corporation. So, if Telstra is the register operator it could be fined $540,000 for breaching the legislation. This penalty of $21,600 is simply insufficient, and it should not be discretionary. If individuals or organisations inappropriately use Australia's most sensitive health data, the punishments should be severe and automatic. These three amendments—to prevent data being held by a corporation but, in the case where it is, mandatory disclosure of any breach of data privacy and serious penalties for disclosing information or publishing it either intentionally or inadvertently—are absolutely essential items. It is a shame the government did not spend the time they should have spent on this. They would have had two years to make it happen. Rushing legislation like this and rushing a process that is as important as this is an absolute sign of their incompetence.

Tony Zappia (Makin, Australian Labor Party, Shadow Parliamentary Secretary for Manufacturing) Share this | Link to this | Hansard source

The National Cancer Screening Register Bill 2016 is another example of this government's bungling of so much of the legislation that comes before this parliament. We see that the legislation now being debated is going to be changed by the government, thanks to the efforts of Labor and crossbenchers who had it referred to a Senate committee for inquiry. At that time, the minister said that this was another hysterical tirade by Labor.

To put the importance of this matter into context: one in three Australian men and one in four Australian women will be diagnosed with cancer before the age of 75. Each year more than 123,000 new cases of cancer are diagnosed in Australia and an estimated 45,700 pass away because of the illness. President Obama, in his State of the Union address on 12 January 2016, in recognition of the devastation and prevalence of cancer, said:

For the loved ones we've all lost, for the family we can still save, let's make America the country that cures cancer once and for all.

Such are the prevalence and effects of cancer across humanity. For that reason, this legislation will be of widespread interest to Australians, as very few Australian families will not be affected by cancer at some stage in their lives, and therefore the register itself will become relevant to them.

The effect of this legislation is to pool nine registers that currently exist across the states and territories and the national register into one single national register. It is a concept Labor supports, because it will have benefits. The register, however, is an important document. It will include Medicare numbers and Medicare claims data. It will function on an opt-out basis only. That is, most people's names will be included on the register, because I doubt that too many of them will opt out of it. It will also capture other sensitive information, such as whether a woman has had a hysterectomy and the person's GP or health provider, the HPV vaccination status of the person, bowel and cervical cancer screening test results, and bowel and cervical cancer diagnosis.

Indeed, some 11½ million Australians may have their health information on the register.

The register will, of course, also serve a useful purpose in managing the risks and health effects of cancer. The existing registers are presently managed by the state and territory governments. In Victoria, I understand that the Victorian Cytology Service handles the register on behalf of that government. Under this proposal, the government wants to effectively outsource the register to a private body, in this case Telstra. I am not aware of Telstra ever having had any expertise in managing a register of this kind. My understanding is that the current register holders have, to date, had no complaints made against their ability to manage and hold the relevant information, and yet the government now wants to outsource the register to Telstra for five years, with a right of renewal for an additional 10 years. This is a $220 million program. I have not seen the contract itself and I am not sure whether anyone in the opposition has seen it. We do not know what the government has promised Telstra and agreed to with Telstra, and we do not know why Telstra was chosen in the first place. What we do know, as a result of the Senate inquiry, is that it would appear that in no country in the world does a private organisation hold a register of this kind. We do not know where the register is going to be kept or where it is going to be housed. Is it indeed going to be sent offshore, as so many other operations of private companies are? We do not know what the attraction was for the government to give the register to Telstra. What is even more interesting is that the agreement with Telstra, as the member for Parramatta has already pointed out, was signed on 4 May, just before the calling of the last federal election. It was never announced at that time, and one can only speculate as to why, but the government said very little about it at the time. I suspect it said very little about it because the government knew that giving this kind of information to a private company to hold would not have been a popular move throughout the Australian electorate.

As a result of this legislation having been brought to the parliament and then referred to the Senate for inquiry, there will be, I understand, some amendments moved by the government. I understand also that the Information Commissioner made some recommendations with respect to the legislation. So we have the Information Commissioner and the Senate inquiry both recommending amendments to the legislation—before it has even passed this place, highlighting just how badly the proposal was put in the first place.

As the member for Parramatta has quite properly pointed out, Labor will be moving some additional amendments, because, whilst the government has accepted some of the changes that have been proposed, the government has not gone far enough and there are still holes in this legislation. Labor will be proposing some additional amendments to try and tidy up those aspects of the legislation that the government failed to address with its own amendments. In particular, Labor will be moving amendments relating to who is able to hold this kind of information, the mandatory disclosure of information and the penalties that arise for any breaches in respect of it. Each of those three matters is important. Who holds the relevant information is a matter of deep importance to most Australians. We currently have registers held by organisations that are run directly either by the government or by not-for-profit organisations that have had a track record of keeping this information and using it appropriately—and yet none of them have been asked to manage the cancer register for the national government into the future. One has to ask the question: why? We know that Telstra has not in the past managed such a register. In fact it has, to my knowledge, very little expertise in this area or with respect to managing health matters generally. As I and other speakers on this side of the parliament have pointed out, the register will contain very, very sensitive information, I suspect, for most Australians. As the Senate inquiry pointed out, even organisations like the Australian Medical Association and the Royal Australian College of General Practitioners share Labor's concerns about the register being handled by a for-profit corporation.

Given that the government has already signed the contract, I do not know if it is in a position to withdraw from it, but it is of serious concern that the contract was signed before this legislation came to parliament and was passed by the parliament. It leaves the parliament in a situation whereby, if we, as a parliament, were to support Labor's amendment, we would also be in a position where we would have to deal with a contract that has been signed by the government. It is not the kind of position that I believe a parliament should ever be faced with and, frankly, it just highlights the incompetence of the government—perhaps in its rush, before the election, to get the contract locked and signed away with Telstra.

The other two matters go to mandatory disclosure. Again, I cannot understand why the government would not agree to any breaches of information from the register being disclosed to the person who owned that information. It is not sufficient to simply say that we will allow the Information Commissioner to make the decision as to whether the information needs to be passed on to the person involved. I would have thought that most Australians would say: 'We are happy to be on the register. However, if there is a breach, then we have the right to know.'

It is not a matter of whether someone should decide whether they have a right to know. They have a right to know, and Labor's amendment will ensure that that is the case.

The last point is with respect to penalties. The member for Parramatta has quite rightly pointed out the proposed changes that Labor has in mind with respect to penalties. Currently, the penalty for any breaches is $21,600. For a corporation like Telstra it is not a significant amount of money. Labor's proposal is that the penalty be increased to $108,000 and up to five times that amount for a corporation. That makes the penalty a substantial penalty of $540,000. That, in my view, will ensure that, at the very least, Telstra—who does not necessarily have a good track record in this regard—will do its best to ensure that it manages the register appropriately and that there are no breach of privacy with respect to the information that is contained within it.

All in all, Labor's amendments make this better legislation. I will be interested to hear, when the minister sums up, why the minister will not accept Labor's amendments, particularly with respect to penalties and with respect to privacy breaches that might occur in respect of the legislation.

In summing up, Labor's shadow minister for health, Catherine King, who is in the chamber here today, addressed Labor's concerns about this legislation several weeks ago. As a result of those concerns, the legislation went to a Senate committee, as I pointed out earlier on. The legislation is now better as a result of the proposed amendments that, I understand, will be coming back to the parliament. However, those amendments do not go far enough. The government should seriously consider accepting all of the amendments that Labor is proposing. That way it will have the legislation in place that, I believe, will serve the Australian people much better. I wait with interest to hear just what the government's response to Labor's proposals is, and, indeed, to see the specifics of the amendments that it proposes as a result of Labor having taken this matter to a Senate inquiry.

Lisa Chesters (Bendigo, Australian Labor Party) Share this | Link to this | Hansard source

The change in the conversations that we have in this place is remarkable. Less than 24 hours ago we had the government continuing their pretence about 'Mediscare' and about Labor being wrong about the push to privatise Medicare. Well, this debate and the way in which the government have tried to push this issue through the parliament—where they have not been honest with the Australian people—is another example of why we are arguing that the government's real agenda is to privatise Medicare.

Let me say from the beginning, as previous speakers on this side of the House have said, Labor strongly supports the establishment of a National Cancer Screening Register. However, it has to be done in the proper and correct fashion. What we heard during the election, after the election and as recently as this morning is that prior to the election the government signed a contract with Telstra to establish the National Cancer Screening Register. Like other speakers, I will outline the weaknesses in the government's push to do that. If you are saying on the one hand, to the average Australian out there, that, 'We have no plans to privatise,' yet you sign a contract with Telstra to privatise part of what people would see as a government service, then they put two and two together and say: 'What is the government on about? I thought they said Medicare was safe from privatisation.' It is clearly not, and this push by the government is another example of their real agenda for Medicare.

So keen were they to rush this legislation through that we are here today with amendments. These amendments are necessary to ensure that the data that the register will hold—the most sensitive of health data—is not going to be misused or leaked and that it is safe. The register will hold Australians' most sensitive data, like the results of cervical and bowel cancer screenings. We need to make sure that we get any establishment of this register right. We have concerns about the government's shambolic approach to this important legislation. There are serious concerns about how they have managed this. It demonstrates, again, how chaotic the government are.

On the eve of the last election, this government signed a $220 million contract to outsource the register to Telstra, before this parliament even saw the legislation. When you talk to people in the community, Deputy Speaker Mitchell—and I know you would have lots of these conversations with them—and when you explain that the government signed a contract with Telstra for the new National Cancer Screening Register most people roll their eyes. They struggle to get Telstra on the phone to fix basic phone services! They struggle to get Telstra out to look at faulty connections! There are problems and issues within Telstra. They have a lot of work to do to rebuild their brand. They have a lot of work to do to rebuild respect and their relationship with people in regional Australia in particular. So to hand them a $220 million contract right before the election means people in the community are rolling their eyes and saying: 'What will happen? What does this mean?'

In an embarrassing rebuke to the government, their own Information Commissioner has made six recommendations to the Senate inquiry to help fix the legislation. Some of the loopholes identified by their own commissioner were alarming. So, while the government claim that we are being hysterical, we were actually proved right again. This seems to be a bit of a pattern with the government—for example, the government's bills draft may allow the register to operate to collect all Medicare claims and information for people who are on the register. All Medicare claims! It is clearly a loophole that the government did not foresee.

Last week Labor proposed nine amendments to improve the government's legislation. The government has now accepted many of these and we understand that it may have more to be presented. We too have our own to make sure that we close all of the loopholes in the legislation. There are still gaps that are being identified by their own people, by health services.

I recently held in my electorate a number of hearings and forums about Medicare. I want to spend a few moments on that because it is an issue that people in the community are scared about. They are scared about the increasing out-of-pocket expenses in relation to Medicare. They are scared about the cost of going to the doctor. Several people have said to us that since the government froze the Medicare rebate and started to talk about a co-payment or a GP tax their doctor has started charging a gap fee. So, whilst bulk-billing rates are high in areas like Bendigo, more and more doctors are charging a gap on top of that. Doctors have also told us that they, unfortunately, have to do that because of the cost of running their clinic. It is alarming that we have GPs now saying that their practices are becoming unviable because the government has continued the freeze on the rebate. The price they are getting from the government means that their practices are struggling to break even.

In the city and places like North Melbourne it is not such a big issue because their bulk-billing to fee-paying ratio may be 75 to 25—75 per cent have the disposable income to pay upfront and 25 per cent may be bulk-billed on a concession card only. In parts of the region it is the complete reverse. In parts of Bendigo, like Kangaroo Flat and Eaglehawk, households are struggling on the smallest of incomes, so their ratio is the complete reverse. Some 75 to 80 per cent are bulk-billed concession card holders and only about 20 per cent can afford to pay upfront. If you do the maths, you work out very quickly that it is hard for these GP bulk-billing services to continue.

What happens when GPs start to increase their fees is that people stop engaging with primary health care. They stop going to the doctor when they need to. They might turn up in our emergency departments. They stop doing preventative health care. We want people to be proactive. Let me turn to how this relates to this register. It is a very similar story when it comes to people being proactive about getting regular testing. Take a Pap smear, for example, and it talks here about the cervical cancer register. I had one person tell me that it cost her $70 to go to the doctor to get her Pap smear test. She had to pay a bit of a fee to get the test done and she had to pay to go to the doctor. She will get some of that back through Medicare, but she said: 'I didn't know until I turned up and I had to have $70 in my bank account to do it. I will now think in two years time whether I will actually go. I will have to plan ahead to have the money in my account.'

That is the wrong message we want to be sending women. It is the wrong message we want to send to people over 55 around bowel cancer or prostate cancer. We want to encourage people to go to their GP and have these tests because we know that when it comes to all of these cancers early intervention and early diagnosis are critical. We have been able to drastically reduce the rate of women dying of cervical cancer because we have early testing, and we have had a strong community based campaign to encourage that.

My concern about some of the reforms that have been put forward is that, if it is not guaranteed that people's data and results are kept secret—that they have the privacy that they currently have within our government departments—people will not go. Until it is guaranteed and people are sure that Telstra can get this right, that the government can get this right, people may be deterred from getting these vital tests that can help improve their health outcomes. If there is a sad case where they are diagnosed, they can seek the help they need.

Another alarming thing that has come up as well through the discussions we have had is the cost involved with cancer treatment. It is an area we do need to look at. A decade ago a woman in Bendigo was diagnosed with breast cancer. She said her out-of-pocket expenses were about $300. Today a woman in Bendigo, who decided to pay for some of it upfront because she wanted the best quality care she could get, paid $30,000. It is extraordinary that in one town, a decade apart, two women diagnosed with breast cancer had such different experiences when engaging with our health system—$300 versus $30,000.

I do not believe that the government really understand what is going on on the ground, particularly in regional areas, when it comes to health care and healthcare delivery. That is why I do not believe they fully understand what they have put forward. They have rushed legislation in relation to the National Cancer Screening Register. They still have not closed a number of the gaps and loopholes. There are a number of amendments that we will still put forward. We want to see the government adopt them because only through adopting these amendments can we ensure that the new register does have the confidence of the community, does have the confidence of the health profession and does have the confidence of this place that it will actually do what it is to do.

The amendments will still allow the register to be operated by one government agency or a not-for-profit organisation that has successfully managed existing registers. This is critical. This is what people want from their federal government when it comes to health care and healthcare delivery. Labor's amendments will also provide that the new National Cancer Screening Register be operated only by the government or a not-for-profit agency. This is critical. It goes to the heart of one of Labor's arguments about this government's hidden agenda to privatise Medicare. We believe that a register of this nature—the National Cancer Screening Register—should be operated by the government or a not-for-profit agency.

It should not be operated by a for-profit agency.

How can members of the government stand up and say the government has no privatisation agenda for our health system? How can they do that in one breath knowing full well that they signed this contract to a private company in the midst of an election hoping that people would not notice? I know some of the people in the Nats still see Telstra as a great government business. You guys sold it off years ago. It is now a profit-making independent business. It is not part of the Australian government; it is not owned by taxpayers in any way. So to try and link the two is just messy and a demonstration of how chaotic this government has become.

I hope the government will realise the importance of these amendments. Again, it is an example of how, in opposition, we have cleaned up the government's mess. This legislation is another example of how the government are not really interested and are not putting in the time and the detail we need to ensure that we have good quality health care. They have managed to turn the good idea of establishing a National Cancer Screening Register into another shambolic attempt and another mess that they have created. It demonstrates that they do not really understand what is going on in our regions with regard to health care and Medicare.

Graham Perrett (Moreton, Australian Labor Party) Share this | Link to this | Hansard source

I too rise to speak on the National Cancer Screening Register Bill 2016. We all know how important screening for cancer is. More than 130,000 Australians will be diagnosed with cancer this year. Sadly, nearly 47,000 of these, our fellow Australians, will die from cancer. The risk of any of us being diagnosed with cancer is staggering. In 2016 the chance of a man being diagnosed with cancer by their 85th birthday is one in two—50 per cent—and for a woman it is one in three.

Like most Australians, I care about this topic and, unfortunately, like many other Australians, cancer has touched my family. In fact, my mum, who was a former nurse, had a screening in 1989 and then was treated with a lumpectomy in 1995. I remember that particularly well because it was the year I was married. Mum was treated a day before my wife's bridal shower and she did not tell anybody. She was just part of that stoic, good old Irish Catholic stock. She did not tell anybody. It was like it was no-one else's business. Thankfully she was treated with the lumpectomy and had the lump removed, and she went on to live a longer life. She died in May 2011. Because of that family history, all of my three sisters were screened below the age of 40. Sadly, on my father's side, my aunt—Aunty Ann—died from breast cancer and my mum's sisters and my cousins also have that breast cancer gene. So it is so important that we get screening right. We know that it is vital.

BreastScreen Queensland do great work. They were the pioneers, in fact, of cancer screening. They were the first public breast-cancer-screening service in Australia. I say an especially big hello to all of those who work at their Brisbane south side service, especially those operating out of the QEII hospital in the middle of my electorate of Moreton. They do fantastic work; they save lives every day. There are 11 services throughout Queensland and each service has several satellite locations. With Queensland being such a decentralised state, even on Brisbane's south side they have seven satellite locations so that everyone can have access to this important screening service.

We know that screening for breast cancer is effective. The mortality rate for breast cancer has decreased from 17 people per 100,000 back in 1968 down to 11 people per 100,000 in 2013. The Cancer Council has confirmed that it is clear that a substantial number of Australian women are alive today because an early-stage breast cancer was detected through the BreastScreen Australia program.

Screening for cancer can save lives. I recently turned 50 and I was happy to participate in the National Bowel Cancer Screening Program. I know it is not a sexy topic, but is just something that all people need to do.

I hear that, Deputy Speaker—that you cannot believe that I am 50, but that is the case!

Mark Coulton (Parkes, Deputy-Speaker) Share this | Link to this | Hansard source

Yeah, I'm shocked!

Mr Pitt interjecting—

Graham Perrett (Moreton, Australian Labor Party) Share this | Link to this | Hansard source

The member for Hinkler, I am sure, would say the same thing! Labor supports the establishment of the National Cancer Screening Register because it will replace nine existing registers, reduce duplication and improve the prevention, identification and treatment of cancer in Australia. It is the right step for a modern federation. All the information about cancer screening and treatments for an individual will go to the one register. It will enable a person's GP to see their entire cancer-screening history, wherever that screening occurred in Australia. It will be particularly beneficial for people who move between states and territories, so particularly the military and their families. In Australia in 2016, this is more the norm than the exception. That is the modern Australia: people will move for work, economic opportunities and study opportunities.

This bill will also improve the current available screening programs for cervical cancer and bowel cancer. The change to the National Cervical Screening Program will see a two-yearly Pap test being replaced by five-yearly cervical screening tests. This change will implement the recommendations of the Medical Services Advisory Committee. This new screening process is expected to prevent 140 cervical cancers a year and hopefully more. The change to the National Bowel Cancer Screening Program will see the process increased to biennial screenings. Australians aged 50 to 74 will be screened every two years by 2020, and clinical trials indicate that biennial screenings will prevent around 300 to 500 deaths per year.

Labor applaud and support these changes to cancer screening, and we wholeheartedly support the establishment of a National Cancer Screening Register. But we do have some concerns. When Labor and the crossbench referred the legislation to a Senate inquiry, they were accused by the Minister for Health and Aged Care of a 'hysterical tirade'. In a submission to that inquiry, the government's own recently reappointed privacy and information commissioner made six recommendations to fix the legislation. The commissioner identified that the government's legislation allowed the register operator to collect all Medicare claims information on people on the register.

This information would include all the health services a person has received, including very sensitive information like mental health and sexual health. Recently, Labor proposed nine amendments to the government's legislation, and the government, after much kicking and screaming, has accepted many of these amendments. We understand that the Turnbull government will move some amendments to its own legislation to meet the demands that the Labor health team has suggested. I thank the shadow health minister for her work in this area. However, the government's legislation, even if it makes the amendments it has agreed to, will still be full of holes.

Labor will be making three additional amendments to the legislation to ensure that Australians' personal information is collected and used appropriately and that adequate penalties are in place to protect all Australians. First, Labor will make an amendment to limit the operation of the register to a not-for-profit organisation or government agency. The government's legislation would actually allow it to outsource the register to multinational for-profit corporation. I repeat: that is what the current legislation would allow—a multinational company or for-profit corporation to do this work, the handling of Australians' private information.

I do note that the Turnbull government has already entered into a contractual arrangement with Telstra to operate this new register. Four days before Prime Minister Turnbull called the election, this government signed a contract with Telstra to operate the National Cancer Screening Register. That is extraordinary, because there was no legislation that had been passed and none was before the parliament when that contract was signed. The health minister never announced that a contract had been entered into. After the media reported the contract during the election campaign, the health department—the public servants—issued a media release defending the contract. This is yet another example of this government trying to privatise our health care.

Labor has serious concerns about outsourcing Australians' personal details to a for-profit multinational company. This register will hold extremely sensitive information about all Australians who are eligible for cancer screening programs—information such as names, addresses, contact details, dates of birth, gender, sex, Medicare number, Medicare claims, preferred GP or other health care provider, human papilloma virus, or HPV, status, screening test results, cancer diagnoses. It is unprecedented that this type of sensitive health data would be held and managed by a multinational company, in particular a multinational company with a history of privacy breaches. In fact, there is nowhere else in the world—I repeat: nowhere else in the world—where for-profit corporation operates a cancer screening register. The Labor Party understands the ideology of those opposite to the outsourcing of public health. We see it every day; we saw it before the election, during the election campaign and we have seen it since the election.

In 2011 Telstra had a privacy breach within their own organisation where the personal details of 800,000 Telstra customers were left online and available to anyone via Google for eight months. Our health records are important and deserve the best protection possible. Labor believes that the best protection would be for the register to be operated by organisations that are not at the whim of their shareholders or that are focused on extending their profit margins. Who would these organisations serve, the patients or their shareholders? What if there were a breach? Who would we contact if we suspect there has been a breach? Telstra? They are not exactly known for their prompt customer service, as many Australians can testify.

The information that this register will keep could not be more sensitive. Telstra will know whether a person has cancer; whether a person has a precursor to cancer or genetic markers that lead to cancer; whether a woman has had a hysterectomy; whether a person who identifies as a man is biologically a woman. This information is incredibly personal. It is not information that any of us would want to be available for general consumption. The AMA, the Royal Australian College of General Practitioners and other experts all share Labor's concerns about outsourcing the register to a for-profit corporation. It is not much of a stretch to imagine how this information could be very valuable if it got into the wrong hands.

This bill also allows the minister to make rules which would give Telstra an even greater volume of personal information. Why would the government even consider making a multinational for-profit organisation the custodian of this sensitive, personal information? There is no need to look to multinational for-profit organisations to operate this cancer screening register. There are a range of government and not-for-profit organisations which are currently successfully managing the existing screening registers, such as the Commonwealth Department of Human Services, which operates the National Bowel Cancer Screening Program Register; the state and territory organisations which operate the National Cervical Screening Program; the Victorian Cytology Service which operates the Victorian and South Australian registers for the cervical screening program. There is no reason why any one of these organisations, which already have expertise in managing these registers and which have proven track records in this area with good checks and balances, could not operate the National Cancer Screening Register.

In fact, the Senate inquiry heard evidence that one of these organisations could deliver the register on time from 1 May 2017. So this Turnbull government is gambling with the sensitive personal health information of Australians. Telstra has never operated a register like this before. There is no way that the government could be confident that it would successfully manage this important and crucial register. It is particularly concerning when Telstra's core business—the one it has been operating for many years—has recently struggled with numerous network outages. The Prime Minister, during the election campaign, said 27 times that he would never outsource Medicare, yet this 45th Parliament has already seen a bill from this government that effectively does exactly that. This bill will allow the government to hand over to a multinational telecommunications company the Medicare numbers and Medicare claims of Australians. So Labor's amendment provides that the new National Cancer Screening Register can only be operated by a government or not-for-profit corporation.

Second, Labor will move an amendment to ensure individuals are notified when their most sensitive health data is breached. The government's legislation only mandates that if there is a data breach Telstra only has to tell the Department of Health. Individuals should be told if their most private health records are accessed inappropriately. When sensitive Medicare and PBS data was breached recently, the government took weeks to come clean about the breach. So Labor's amendment will mandate disclosure of data breaches to the affected individuals.

Thirdly, Labor will propose an amendment to increase the penalty for unauthorised use or disclosure of information. The bill does provide for penalties for breaches of privacy but they are almost laughable when we are talking about multinational companies. The penalty is $21,600 for recording using or disclosing information without authority.

How much did Telstra make last year? In the last six months of 2015, Telstra had profits of $2.1 billion. So while a not-for-profit might find a $21,000 fine prohibitive, for Telstra it will not even cause a ripple.

Stephen Duckett, former health department secretary, said:

The automatic consequences of release of data – inadvertent or not – must be made so great that any risk-management matrix will ensure the organisation and its managers always have patient privacy at the forefront of their mind.

So Labor's amendment would increase the penalty for unauthorised use or disclosure of information from 120 penalty units—$21,000—to 600 penalty units, or $108,000. Under the Crimes Act 1914, a court has a discretion to impose a penalty up to five times this amount on a corporation. So Telstra, if it were the operator of the register, could face a fine of up to half a million dollars.

In the last sitting week of parliament the government was insisting that its legislation had to pass without scrutiny. We now know why they did not want this legislation looked at too closely: it was a mess. Labor's amendments will try to fix a very poorly-thought-out piece of legislation.

There is one aspect of the government's behaviour that sits very badly with me: this idea of entering into of a contract with Telstra to hold this register, all done quietly a few days before the election. Telstra Health, which is the name of the branch of Telstra that the government wants to look after Australians' health information, is described in its own media release when it announced its 'selection' to deliver and operate the Australian National Cancer Screening Register. Clearly, this is a business that is intended to make a profit and we need to scrutinise this decision much more closely.

Terri Butler (Griffith, Australian Labor Party) Share this | Link to this | Hansard source

It was very useful to listen to the member for Moreton who, of course, is a very strong advocate for his community and for community access to health care that is quality, that is accessible and that is affordable—and, of course, that is safe and secure for people, including in relation to their privacy. He is a very fine member, and someone who I am very grateful to have as a neighbour in Brisbane because, of course, our electorates border each other. So I wanted to thank the member for Moreton for his contribution on this National Cancer Screening Register Bill 2016

Mr Deputy Speaker Mitchell, as you know, this bill is about the National Cancer Screening Register. Obviously—I think it probably goes without saying, but just to avoid any possibility of doubt—we on the Labor side strongly support the establishment of the National Cancer Screening Register. We also strongly support improvements to cancer-screening programs that the new register will support. But we do hold some concerns about this particular bill. This bill relates to the establishment of the register, and it should be noted that the register will hold people's most sensitive health data, like the results of cervical cancer testing and the results of bowel cancer testing. So, given the sensitivity of the health information that will be contained in the register, it is very important that this parliament gets the framework right. That is why we have such serious concerns about the government's shambolic approach to this legislation.

I think it is really quite disappointing that this government pre-empted the election and pre-empted the legislation coming before the parliament by actually signing a $220 million contract just before the election was called—on the eve of the election being called—to outsource the register to Telstra. We had not even seen the legislation in this parliament when they signed that contract.

It is a massive amount of money—$220 million—and to sign up to a contract in relation to this register without having the legislative framework even before the parliament, and in the dying days of the 44th Parliament just before the election was called, I think speaks for itself. It was deliberately intended to try to lock the government into a position and to try to force that position on this parliament without really any thought being given to the possible ramifications for privacy.

Let's just talk about the sort of information that will be contained on this register. It will have your Medicare number. It will have your Medicare claims information, which could show important information about the appointments that you have had. It would have your preferred GP or other healthcare provider—and there are some people who go to very specific forms of healthcare services and who would not necessarily want that in the public domain.

It has your HPV vaccination status, this data. In other words, it has the status of whether you have been immunised for HPV. It has screening test results and it has cancer diagnoses—very, very highly personal types of data. The sensitivity and personal nature of that data are important to everyone. It is important to everyone that they can be assured that their data will be kept private if it is on a register.

It is particularly important that people do not fear for the privacy ramifications to the extent where they do not go and get the screening done or they do not go and get the testing done because they are so worried about privacy ramifications. So people need to feel that there is a very robust privacy framework in relation to very highly sensitive health information. People need confidence that their privacy will be protected.

For example, Mr Deputy Speaker: as you know, I have portfolio responsibility for equality. I am concerned that this bill will create a framework where highly personal information about a trans man who has a cervix will be kept in this register, and this register will be in the hands of a private firm. I am concerned about that for obvious reasons.

One of the reasons that this is such a difficult issue, of course, is because the government has been completely hopeless when it comes to protecting people's privacy and protecting data. In fact, it was in February 2015 that there was a report of the Parliamentary Joint Committee on Intelligence and Security recommending that mandatory data breach notification legislation be introduced into the parliament by the end of 2015. And it was in March 2015 that the government response to that report agreed to that report. They agreed to that report.

Of course, in the previous parliament we had introduced mandatory data breach notification legislation, but it had not gone through in time before the election and had lapsed. The government then took office in September 2013 and did not even agree until March 2015 to bring forward data breach notification provisions. And it was not until 30 November 2015 that the government produced an exposure draft of its proposed mandatory data breach notification legislation.

That is a very, very long time. More than two years after they were elected, the Attorney-General finally brought forward into the public domain, in draft, proposed mandatory data breach notification legislation. He then conducted a consultation process. That consultation process ended in March 2016. A year after they had agreed to bring forward mandatory data breach notification legislation by the end of 2015, we finally had the end of the consultation process.

After that process, the Attorney-General said, 'Alright—we will be bringing this legislation forward in the winter 2016 settings.' It did not happen, did it? No, it did not happen. There was no mandatory data breach notification legislation brought forward in the winter 2016 settings. The most recent reporting indicates that the Attorney-General is now saying that we will be seeing this legislation in the spring sittings. There was a media report on 4 October in which the outlet reported that Data Governance Australia was calling for the bill not to proceed, but the Attorney-General's Department was saying that it would be introduced in the spring sitting. That remains to be seen, because, as is entirely obvious from the really tortuous process that I have just described, the Attorney-General has been utterly hopeless at bringing forward mandatory data breach notification legislation to this parliament.

We are seeing the consequences of that right now. They have signed a contract with a private firm to host the National Cancer Screening Register well in advance of bringing forward the legislation and even on the eve of the last election, as I mentioned. But there is no mandatory data breach notification legislation in place, so what has happened? There has been an outcry about this bill. I might say that full credit needs to be given to the shadow minister for health. The shadow minister for health is an excellent, tenacious shadow minister who has worked extremely hard to shine a light on the outrageous conduct of this government in relation to the Cancer Screening Register. It was through her work that the concerns about privacy have been raised.

The government has now conceded that she is right to have those concerns about privacy by indicating that it will have legislative amendments to this bill to deal with data breach notification. But they are inadequate amendments. It is very unfortunate that this government thinks it is okay just to have some reporting programs in place, not to the people whose personal information has inadvertently or otherwise been leaked, but to a government agency. The amendments are not good enough. It is because this government has been so completely hopeless when it comes to data breach notification laws that these amendments to this bill have to be brought in in this ad hoc manner.

I mentioned how effective and thorough the shadow minister for health has been in relation to the concerns about this legislation. She has certainly been very, very firm in holding the government to account on all matters to do with health care. This secret contract signing became public on 26 May 2016 in an article in Fairfax. You will recall that the shadow minister, through public comment at the time, made very clear her concerns that this was yet another example of this government's intention to outsource functions of Medicare.

At the time, she blew the whistle on the fact that the health minister was going to try to announce that Telstra would be given control of the private medical details of millions of Australians by being awarded the contract. She made very clear our concerns about the fact that this was going to go to a private firm, when in fact there are not-for-profit entities in existence that already have significant expertise in relation to cancer screening registries. She has been very firm on our concerns about this specific registry, but also on our concerns that this is the thin end of the wedge. The Prime Minister has made no secret of the fact that he wants us all to pay more for our health care, whether it was early support for the GP tax; the couple of billion dollars worth of cuts to health in the form of freezes to the MBS schedule; the hundreds of millions of dollars in cuts to pathology, which will see people needing breast screens or melanoma scans paying hundreds of dollars, or possibly more, for those tests; the increase in the cost of PBS medicines for everyone, including pensioners. There are a range of concerns that we have about this government's approach to hollowing out Medicare and hollowing out universal health care in this country. This idea that you should privatise and outsource the Cancer Screening Registry is another example of that, on top of the privatisation task force that the Turnbull government had previously established.

It is regrettable that the Prime Minister's only plans for Medicare, the government's only plans for Medicare, the Liberals' only plans for Medicare and the Nationals' only plans for Medicare are to hollow it out and cut it. It is a disgrace. What we need in this country is universal health care. What we need in this country is health care that depends on your Medicare card, not on your credit card. What we need in this country is a situation where the circumstances of your birth, your income, your family background and your cultural background do not affect the quality of health care that you can have access to. We will always stand up for those principles, because Labor created Medicare and defends Medicare. The Liberals attack Medicare, but we will always stand up for universal health care.

I want to be very clear about our concerns with this piece of legislation, which I believe I have done. But I am also concerned about the broader questions of data security that arise from this government's failure to bring forward mandatory data breach notification provisions. This is a very, very acute situation, where it is highly personal and sensitive information, like your cervical cancer history, your cancer screening history, your cancer diagnosis history or the question of whether you are a trans man with a cervix. But there are other areas also affected by the failure to bring forward mandatory data breach notification provisions.

Specifically, there are concerns about the government's intention to look at outsourcing or privatising some other forms of data that are presently held by government, and, of course, some of those have been in the news recently and are the subject of some controversy.

Beyond speaking about that issue, I do think that this is an opportunity to speak about what a shame it is that this government has so comprehensively stuffed up the process for this bill. There is such strong bipartisan support for a National Cancer Screening Registry. There is such strong bipartisan support for the improvements to the cancer screening program—improvements that will actually see a situation where we will have an estimated 140 additional early diagnoses and preventions of cervical cancer every year. Those are the things that we strongly support for which there is strong bipartisan support. But to have a sneaky process of secretly doing a deal to set up a contract with a private firm before the election was called—on 26 May that become public—well in advance of any legislation tabled in this parliament for debate so that the Australian people could not even see the legislative framework that was going to surround this contract, and then to do so in a way that the health minister had to then rush out and defend it because she had done it behind closed doors and had not been straight with the Australian people, is a very great shame. To have so comprehensively failed to be able to help people in relation to their data security is also a very great shame.

Gai Brodtmann (Canberra, Australian Labor Party, Shadow Parliamentary Secretary for Defence) Share this | Link to this | Hansard source

Labor strongly supports the establishment of a National Cancer Screening Registry, but this register will hold some of people's most sensitive data, including the results of screening for cervical and bowel cancer, so we have to ensure that we get it right.

While I am on the subject of cervical cancer, I want to use this opportunity to send a message to Australian women about the important need for them to get regular Pap smears. I have a friend who is currently down in Melbourne at Peter MacCallum Cancer Centre undergoing her second round of tests as a result of being diagnosed with stage 4 cervical cancer last year. She spent six months in Melbourne, in and out of Peter MacCallum, getting treated. She had a pretty good diagnosis at the end of it, but she is down in Melbourne again getting a reassessment of how things have progressed. It is a very aggressive form of cancer, and she had to go through a number of interventions.

I also want to take this opportunity to thank the team at Peter MacCallum for looking after her so beautifully. She has nothing but high praise for the team at Peter MacCallum. They helped her through a very difficult time both physically and emotionally. She was down there, quite often on her own, in those clinics addressing the subject of her own potential mortality. The support team at Peter MacCallum who looked after not just her health concerns but also her emotional wellbeing concerns were fantastic. Again, I want to take this opportunity to thank the team at Peter MacCallum for doing such a wonderful job of looking after her. She is down in Melbourne at the moment getting the next round of tests—may the news be good. She is a very close friend of mine, and it came as a huge shock to all of us when she heard this news last year. She has been amazing in dealing with it, confronting it with the stoicism that she has come to be known for. I wish her all the best on the test results. My thoughts are with you, my dear friend.

Once more, I want to take this opportunity to thank the team at Peter MacCallum, who have helped her through this very challenging time—may it be an end to this challenging time—but who also help hundreds of thousands of Australians each year in providing health support and also emotional wellbeing support.

Creating a register for data of this level of sensitivity requires taking the time to consider options, to consult with the community and to review and refine the final product. Australians expect the best, and that is what they deserve. Labor supports the establishment of a National Cancer Screening Register so long as it meets the community's highest expectations of quality, safety and security, and that is a long away from what the government originally proposed.

When it comes to the National Cancer Screening Register, the Turnbull government's policy-making process has been an absolute shambles. On the eve of the election, the Turnbull government signed a $220 million contract to outsource the register to Telstra before parliament even saw the legislation. On the eve of the election, they signed a significantly large contract with a for-profit organisation before parliament even saw the legislation.

This is typical of the Turnbull government's commitment to oversight and accountability. Apparently the only people who need to see and review the government's legislation before contracts are signed are in the Turnbull cabinet. We, on this side of the House, see no virtue in bad policy done on the fly as is so typical of this government. We, on this side of the House, believe in getting policy right. When Labor and the crossbench referred the government's bills to a Senate inquiry, we did so to ensure the expectations and concerns of the community were met and addressed.

It is entirely reasonable for the community to expect that a national register of individuals' most sensitive data is well designed and well produced to ensure a well-functioning outcome. According to the Minister for Health and Aged Care, referring legislation to the Senate amounts to what she has termed an 'hysterical tirade'. These are her words. According to the minister for health, it is her government's view that a commitment to good policy is not reasonable; it is hysterical. What an embarrassment it must have been for the government's own Privacy and Information Commissioner to have made six separate recommendations on how to fix the legislation. While the government set about accusing its opponents in engaging in hysterical tirades, Labor began the process of getting right what the government has persistently got wrong: bad policy done on the fly.

A good government would not rely on the opposition to fix its mess, but this shambolic Turnbull government's mismanagement of the legislation for a national cancer screening register has left us with no choice but to get actively engaged in this. We do not think it is an hysterical tirade to question the wisdom of letting the register operator collect all Medicare claims information on people who are on the register. This is what the government's plan originally proposed. Under this plan, Telstra would be able to see all health services a person has received, including in sensitive areas, like mental health and sexual health. Telstra would be able to see all those health services on those very sensitive issues.

Australians deserve better than that. They deserve a better standard of protection than that, and they are not getting it from this government. That is why, last week, Labor proposed nine amendments to improve the government's legislation. We have dragged the Turnbull government kicking and screaming to the table, and it appears they will move a series of amendments to accommodate our demands.

While the government accused us of some hysterical tirade, we set about getting the policy right. We set about fixing the mess left by the Turnbull government. The Turnbull government has turned around, admittedly—tail between its legs—and has said, 'Labor, maybe you do have a point. Maybe this legislation could do with a few changes.' They have agreed to a few of Labor's amendments but they have not agreed to all of them. They have put pride before policy and, as a result, their legislation is still full of holes. But the community expects that we will get this right, as I have said many times through the course of this speech. This is holding sensitive data about their health—about their mental health, about their sexual health, about their history.

So in addition to the Labor amendments that the government is accepting, we will move three amendments that they have refused to accept. Our amendments strengthen the protection of Australia's personal, private and sensitive information. Our amendments ensure that this data is collected appropriately, is reviewed appropriately and is protected appropriately. We think making good policy means that if you know there is a gap or a loophole you close it. But by refusing to accept Labor's amendment to close a number of glaring loopholes, the Turnbull government seems to think that good policy means saying 'no' to fully protecting Australians—because it was Labor's idea to do so. This is how churlish they are: 'It was Labor's idea, so let's just say no.'

We think committing to a policy that is full of loopholes, despite a number of cybersecurity concerns, is not a recipe for good policy. But it seems it is another example of this government and its leadership sticking with a bad policy even though they know it is bad. We will not do the same. That is why Labor will proceed with its amendment to limit the operation of the register to a non-for-profit organisation or a government agency.

The Senate inquiry heard that you cannot find a country—anywhere in the world—where a for-profit corporation is responsible for the operation of a cancer screening register. This is not the sort of innovation Australia needs. The register should not be signed over to an untested, unproven operator that exists to deliver a profit. Yet that is what Telstra is and that is what the government is trying to do. It is offering Telstra access to some health information that we have never offered access to before—your Medicare number, your Medicare claims information, your screening results. This is the information being offered, for Telstra to have access to.

The government is signing off on giving Telstra access to data that reveals whether a person has cancer, whether a woman has had a hysterectomy, whether a person who identifies as a man is biologically female. And all of this information will be signed over to Telstra to look after. The Turnbull government may think that is not a problem. It may accuse us of engaging in hysterics, of throwing tantrums, of generating outlandish conspiracy theories, but I wonder if they also accuse the Australian Medical Association of the same? I wonder if the Turnbull government's minister for health is about to press 'send' on a media release accusing the Royal Australian College of General Practitioners, and other experts, of another hysterical tirade? These organisations share Labor's concern about outsourcing the register to a for-profit organisation. They are concerned, as Labor is concerned, that handing this data to a private for-profit corporation with a history of privacy breaches represents a fundamental failure to protect Australians' most sensitive and personal health information.

We want the best protection and we want the best policy. That is why Labor will move an amendment to ensure that individuals are notified whenever their most sensitive health data is breached. The Turnbull government's legislation means that if and when there are data breaches, Telstra's only responsibility is to notify the Department of Health. It appears that the government is now willing to accept Labor's amendment that the privacy commissioner be made aware of any breaches. That is a significant improvement, and it is to be welcomed. But it does not fix the fundamental problem that lies at the heart of the amendment I am concerned about here today. Unless the privacy commissioner's own personal, private health data has been compromised, in some way, by a breach, the amendment will not do enough of what it should do.

What the community expects and deserves is to be told if their most private health information is accessed inappropriately, and we have serious concerns that this expectation is not being met by the government's proposed legislation. The government says it is up to the privacy commissioner to tell individuals, if they choose to do so. This is not mandating notification. This is treating disclosure as an optional extra. It is not making it a requirement. It is, basically, at the discretion of the privacy commissioner. It treats notifying an individual that their sensitive data has been breached as an after-thought, as not a fundamental responsibility. I am sure—I know—that most Australians will be significantly concerned about that.

It was Labor that first introduced mandatory data-breach notification legislation in 2013 and it was Labor that reintroduced the legislation in 2014. It was Labor that qualified its support for legislation, in 2015, on the government committing for bringing mandatory data-breach legislation to a vote by the end of the year. We do not have it, because the government did not do it. The government says it agrees but it drags its feet on mandatory disclosure. This is a chance for the Turnbull government to match word with deed and show it believes in mandating data-breach notifications. This is an opportunity for the government to show that it is listening to the community, that it is listening to the AMA, that it is listening to the general practitioners, that it is listening to the community's expectations that their sensitive data about their health—

Mark Coulton (Parkes, Deputy-Speaker) Share this | Link to this | Hansard source

Order! The debate is interrupted in accordance with standing order 43. The debate may be resumed at a later hour.