National Cancer Screening Register Bill 2016

Mr PERRETT (MoretonOpposition Whip) (12:46): 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.

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

The DEPUTY SPEAKER: Yeah, I'm shocked!

Mr Pitt interjecting

Mr PERRETT: 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.


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