Helen Polley (Tasmania, Australian Labor Party, Shadow Parliamentary Secretary for Aged Care) Share this | Hansard source

I rise to speak on the National Cancer Screening Register Bill 2016 and the National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016. From the outset, I want to make it clear that Labor strongly supports the establishment of a national cancer screening register, and, in particular, the improvements to cancer screening programs that the new register will support.

Addressing the specifics of these two bills, they will first and foremost establish the national cancer screening register and authorise collection, use and disclosure of information for the designated cancers of cervical cancer and bowel cancer. These bills authorise the migration of existing bowel cancer screening and state and territory cervical screening data to the register, ensuring existing screening information is retained in the new register. The bills also mandate reporting of screening information to the register.

It should be noted that the creation of this register will enable improvements to several cancer screening programs. The National Cervical Screening Program will move from a two-yearly pap test to a five-yearly cervical screening test—the recommendation of the independent Medical Services Advisory Committee. Incorporating this change in the national cancer screening register is expected to stop an additional 140 incidences of cervical cancer a year. In addition, this legislation will see the National Bowel Cancer Screening Program accelerate its transition to biennial screening, with Australians aged 50 to 70 to be screened every two years by 2020 instead of 2034. Clinical trials have shown that biennial screening can prevent 300 to 500 deaths a year. Labor strongly welcomes these improvements, which will arise from the creation of a national register.

When you look at the information the register will hold—some of the most sensitive health data of Australians—you quickly realise the importance of getting it right, and yet the government has approached this important legislation in the most shambolic way. 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. Now in a rush to pass the bill retrospectively, the government has completely bungled the bills.

When Labor and the crossbench referred the government's bill to an inquiry, the member for Farrer accused Labor of a 'hysterical tirade'. But in an embarrassing rebuke of the government their own privacy and information commissioner made six recommendations to the Senate inquiry to fix the legislation. Some of the loopholes identified by the commissioner were alarming. For example, the government's bill, as drafted, may allow the register operator to collect all the Medicare information of people who are on the register. Under the government's plan this would allow Telstra to see all health services that a person has received, including sensitive areas like mental health and sexual health.

The new national register is designed to hold extremely sensitive information about every Australian who is eligible for cancer screening programs. The register is not opt in, and an individual will only be able to opt out of the register once it is implemented. At the most basic level, it will hold an individual's personal details, such as their name, address, contact details, date of birth, gender and sex. It will also hold an individual's Medicare number, Medicare claims and preferred GP or other health providers. The register will also contain extremely private and intimate health data that is usually only disclosed between a person and their GP. The register will record human papillomavirus vaccination status, screening test results and cancer diagnosis.

Further to this, as the government's own explanatory memorandum says, Telstra will know if a person has cervical or bowel cancer, a person has a precursor to cancer or genetic markers that may lead to cancer, a woman has had a hysterectomy or a part hysterectomy, a person is transgender—for example, biologically a woman and has a cervix. Certainly, this is not information that most Australians would be comfortable disclosing to a telecommunications provider. Labor accepts that this information is necessary for the operation of the register, but we do not accept that Telstra, with a questionable record of privacy breaches, should have Australia's most private and sensitive health information. We know that many Australians would question the rationale behind giving a for-profit company access to this health data.

The scope of these bills also makes clear that the minister can give Telstra even more information and the register may be expanded to other cancer screening programs in the future. As the explanatory memorandum notes:

With rapidly advancing technology or changes in screening tests, the range of information that needs to be collected may also change and is difficult to predict. This provision allows rules to prescribe additional classes of data to form part of the contents of the Register that is considered necessary to be included in the Register for the purposes of the Register.

It isn't only Labor that is concerned about the government's decision. The Royal Australian College of General Practitioners, which represents 33,000 GPs, has said of the government's decision:

[The] RACGP would be far more comfortable with [the Register] being operated by a government, tertiary institution or a not-for-profit entity that has little interest in how the data in the registry might otherwise be used for pecuniary reasons.

The Australian Medical Association expressed similar views, saying:

Given the potential commercial value of the data contained in the register, the AMA would be more comfortable with it being operated by government, a tertiary institution, or not-for-profit entity that has little interest in how the data in the register might otherwise be used. This would go a long way to allaying concerns about the secondary use of data for commercial reasons.

These concerns are shared by many others across the health sector, because they know how important it is to get this register right.

Last week, Labor proposed nine amendments to improve the government's legislation. Labor has now dragged the government, kicking and screaming, into accepting many of those amendments. We understand the government will move a series of amendments that meet many of our demands. Remember, this is the same government that said the Senate inquiry was a hysterical tirade and that is now having to amend its own legislation.

And yet the government still cannot get it right. Its legislation is still full of holes. In addition to the Labor amendments that the government is accepting, we will move amendments that it refused to accept. Labor's amendments will ensure that Australians' personal information is collected and used appropriately and that appropriate penalties are in place to protect all Australians.

First, Labor will proceed with its amendments to limit the operation of the register to a not-for-profit organisation or government agency. Telstra has never operated a register such as this. In fact, as the Senate inquiry heard, no for-profit corporation operates a cancer screening register anywhere in the world. The register is far too sensitive to be used as a guinea pig for Telstra's foray into health. It will contain extremely private health information that has never been handed over to a for-profit company before. This information includes a person's Medicare number, Medicare claims information, preferred GP or other health provider, human papillomavirus vaccination status, screening test results and cancer diagnoses. So Telstra will know things like whether a person has cervical or bowel cancer or has a precursor to cancer or genetic markers that may lead to cancer, whether a woman has had a hysterectomy or partial hysterectomy or whether a person who identifies as a man is biologically a woman and has a cervix.

The Senate inquiry revealed that 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, so Labor's amendment provides that the new National Cancer Screening Register can only be operated by a government or not-for-profit organisation. This amendment would still allow the register to be operated by one of the government agencies or not-for-profit organisations that have successfully managed the existing registers: the Commonwealth Department of Human Services, which operates the National Bowel Cancer Screening Program register; a state or territory agency, like those that operate most of the existing registers for the National Cervical Screening Program; or a not-for-profit organisation like the Victorian Cytology Service, which operates the Victorian and South Australian registers for the Cervical Screening Program. The Senate inquiry heard evidence that one of these organisations could deliver the register on time, from 1 May 2017.

Second, Labor will move an amendment to ensure that individuals are notified when their most sensitive health data is breached. Under the government's draft legislation, if and when there are data breaches Telstra only has to tell the Department of Health. We understand the government will now accept Labor's amendment to ensure that the Privacy Commissioner is notified of breaches—another improvement to the legislation that resulted from our 'hysterical tirade'.

But that is not good enough. Individuals deserve to be told if their most private health information is accessed inappropriately. So Labor's amendment will mandate disclosure of data breaches to affected individuals. The government will argue that the Privacy Commissioner can notify individuals if he chooses. But, again, that is not good enough. Individuals must be told. This is consistent with Labor's position across all portfolios. The government says it agrees but is dragging its feet on the mandatory disclosure legislation. Recently, when sensitive Medicare and PBS data was breached, the government took weeks to come clean.

Third, Labor will propose an amendment to increase the penalty for unauthorised use or disclosure of information. Under these bills, the penalty for recording, using or disclosing information without authority is only $21,600. That is a drop in the ocean for an organisation like Telstra, which reported profits of almost $2.1 billion in the six months to 31 December 2015.

A former secretary of the health department, Stephen Duckett, has 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 fines for offences to ensure that they are appropriate deterrents.

Labor's amendments would increase the penalty for unauthorised use or disclosure of the information, from 120 penalty units—about $21,600—to 600 penalty units, which would be $108,000. Under the Criminal Act 1914, a court can impose a penalty of up to five times that amount on a corporation. So if Telstra is the registered operator, it could be fined up to $540,000 for breaching the legislation. Again, the government will argue that the privacy commissioner can seek tougher penalties. But this should not be discretionary; if individuals or organisations inappropriately use Australians' most sensitive health data, they should be punished severely and automatically. Labor will also propose an amendment to ensure the Commonwealth will continue to be the custodian of data in the register. The explanatory memorandum states:

Although the Bill does not address issues of ownership or custodianship of information, the Commonwealth will be the custodian of data in the Register.

There should be no question about explicitly outlining this in the bill as well—and yet the government is refusing to include it. This raises questions about why the government does not want to clearly state that the Commonwealth is the custodian of the data. This is a crucial point in relation to the security of Australians' sensitive information.

The fact is that this legislation reflects the government's overall approach to health and their desire to increase the role of the private sector in our health system. This bill is just another example of the government's determination to privatise our health system. At least 27 times during the election campaign, Malcolm Turnbull said that he would 'never outsource Medicare'. But that is exactly what these bills do. They put Australians' Medicare numbers and Medicare claims information in the hands of a multinational telecommunications corporation. This is a government which spent $5 million trying to privatise the Medicare payments system. Now they want to pay Telstra to store Australians' most sensitive health data. The government have proven time and time again that they cannot be trusted when it comes to health. They have delivered nothing but a track record of cuts and cost shifting from Medicare to patients—privatisation by stealth. The government remain committed to the following: the six-year freeze on Medicare rebates; cuts to Medicare bulk-billing incentives for vital tests and scans; hiking up the price of vital medicines by up to $5, even for concessional patients; and slashing the Medicare safety nets. The government have continued to put profit over patients, and this is exactly why they cannot be trusted. It is why this parliament should be sceptical of their decision to hand over the sensitive information of millions of Australians to a for-profit company.

The government insisted that the parliament had to pass these bills without scrutiny in the last sitting week. Now we know why—the legislation was a mess. Labor and the Senate inquiry have uncovered serious flaws in the government's bills. We are glad that the government will follow Labor's lead and fix some of those flaws. But, to truly protect Australians' most sensitive health information, the parliament needs to pass the remainder of Labor's amendments.