Richard Di Natale (Victoria, Australian Greens) Share this | Hansard source

I rise today to speak to the National Cancer Screening Register Bill 2016 and the National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016. Let me start by saying the Australian Greens are very strong supporters of a national cancer screening register; we are very strong supporters of that. Screening is an important public health tool. It saves lives. When it is done properly, we are able to pick up disease early, we are able to treat it, and we are able to prevent people from developing serious complications and, indeed, from losing their lives. So it is a very important public health tool.

We certainly understand the importance of this reform, bringing together the eight state and territory registers for cervical and bowel cancer screening into one national register, and improving Australia's cancer screening programs, providing a national approach, giving patients and their doctors the opportunity to access cervical and bowel cancer information wherever they are in the country. We absolutely support the register, in line with our support for other improvements to our cancer screening programs for cervical and bowel cancer, to introduce the five-yearly human papillomavirus test and to accelerate the introduction of two-yearly screening for all Australians aged 50 to 74. They are good reforms. They are important reforms. They are positive reforms which bolster Australia's response to these life-threatening cancers. So that is a good thing.

What concerns us with this legislation is the fact that the government saw fit, before the legislation was passed or scrutinised by this parliament, to sign a contract with Telstra Health for its delivery. It is of huge concern to us—a $220 million contract which delivers Telstra sensitive data about the health of Australian women and men. They did this before the legislation was able to be scrutinised by the parliament. So we have grave concerns that this contract was signed prior to any scrutiny. It turned out during a recent community affairs inquiry that such scrutiny was necessary to show up major holes in the data protections within this legislation.

Let me also say that we have concerns about the decision by this government to outsource Australia's highly sensitive data—let's be really clear about this: this is very sensitive data about the health of Australian men and women—to a for-profit telecommunications company. A bit of background is important here. To date, state governments and specific not-for-profits that have this particular purpose have been the only entities to deliver and manage these registers. These have always been the domain of governments and for-purpose not-for-profits. We are moving into uncharted territory here. The current system exists because these organisations have the skills and expertise to do so and because they do not have potential conflicts of interests in holding that data. So we are seeing a big shift here, and we need to pause and reflect on whether in fact this is a shift that we want to make. What sometimes happens in this space is that we see incremental changes, so we could soon see other important health information being managed by for-profit companies. We will look back at the passage of this legislation and ask, 'Did we make the right decision about handing over that sensitive information and outsourcing it from government?' It is a big question, and one that needs to be asked. I will speak to that in a moment when we discuss some of the amendments that have been put forward.

What does the bill do? It establishes a national cancer register for cervical and bowel cancer data. It authorises the collection, the use and the disclosure of information for the purposes of the register and for other purposes such as providing health care. It changes the current system in which there are eight separate state and territory cervical screening registers and a paper based bowel screening register. It establishes a register involving large-scale data migration and merging to create a national database of records for cancer screening information. The existing registries, which will be migrated into the national register and managed by Telstra Health, contain personally identifying information—names, addresses and the results of pap smears, for example, which can allow specific inferences to be made about a person's sexual status. Let's remember that the human papillomavirus is a sexually transmitted virus. We need to recognise here that what we are handing over is information—the names and addresses of individuals and the results of pap smears. People will draw all sorts of inferences about the data that has been provided. So it is absolutely critical that this data be protected and be used for the most limited purposes possible to deliver the national register.

Again, I reiterate our support for a national register. We think it is good idea to consolidate this data and to give people the opportunity to use it in a way that is going to be more beneficial to population health, but we do have concerns about the government's approach to this legislation. What is remarkable is that, initially, the government suggested that we do not undertake what is a core function when it comes to most pieces of legislation, and that is conduct an inquiry so that we can look for some of the potential complications associated with the legislation. This is one of the core functions of the Senate. We have a duty, indeed, an obligation on behalf of the Australian people to examine legislation in detail through our committee process—one of the most important parts of what we do here in the Senate. Only a few weeks ago, indeed, in the last sitting week, we saw the passage of the omnibus bill, which is a piece of legislation so broad in its scope that it included cuts to renewable energy, cuts to family support, cuts to student assistance and a proposed cut to Medicare funded dental care. It is a piece of legislation so broad in its scope that it cuts across many portfolios, yet we had a proposal that that legislation would not be put to a Senate committee. This is a worrying trend. The role of the Senate is to provide scrutiny to legislation, to examine it for consequences both intended and unintended. This is particularly important when we are talking about legislation that delivers Australians' sensitive data to a for-profit company.

So, despite some opposition from government, we moved a motion, together with the Labor Party, to ensure that there was an inquiry held into this bill. We had that inquiry, and we found that there were some substantial flaws within the legislation. The government's own Information Commissioner highlighted a string of recommendations to bring the data protections in the bill up to scratch. There were gaping holes within this legislation. Thanks to the valuable evidence provided by the Information Commissioner, we were able to see some very sensible recommendations emerge from the report into this legislation. We are pleased—we are very pleased—that the government have in the main heeded the advice of the Information Commissioner and are now moving a raft of amendments to their own legislation.

These amendments will tighten up the restrictions on the use of the data, make it explicit that a breach of the data interferes with the Privacy Act and restrict the data available to the register operator. These are really important changes—changes that should have been developed much earlier in the course of this legislation. While it is a good outcome, it does raise questions about why the government fought so hard to avoid the inquiry, which, in the end, has led to improvements and further protections in this legislation. It seems that the government are not only outsourcing the contract to Telstra but also outsourcing some of the responsibilities of drafting legislation and protecting important and private information to the Senate.

The Information Commissioner made it clear at the inquiry that the data protections in the legislation should reflect the protections that are included in the My Health Record legislation. They said that we need to see the protections in this bill reflect the protections that are included in the My Health Record. So, while the government's amendments do reflect that this advice was provided by the Information Commissioner—and they have sought to align a number of requirements in the legislation to the My Health Record legislation—they do not go far enough in terms of some aspects of the My Health Record. For example, increasing the penalties for breaches of data, and requiring the people who are affected by a breach to be notified. They are two things that make up part of the My Heath Record legislation that were not included in this bill. We are pleased that there are amendments to this effect coming before the parliament, and that is why we will be supporting those opposition amendments to improve those protections.

Being frank, if it was my data, or the data that belongs to one of my family members, and there was a breach—no matter how insignificant—I would like to know. That is also another important incentive for the people who are managing this data to ensure that breaches do not occur. It is another protection within the legislation that provides further incentives to avoid data breaches. If there is a significant data breach, no matter how broad, no matter how many people are affected, those people will need to know. And they have a right to know. They absolutely have a right to know the data they have given has been compromised.

On the second aspect, which is that aspect of penalties to try and ensure that the legislation reflects My Health Record, we do take the comments of Professor Stephen Duckett from the Grattan Institute very seriously when he says that the penalties in this legislation for a company like Telstra are laughably insufficient. The government amendments do not do enough to fix the problem, and the opposition amendments, which lift the penalties, are something we will support.

Let me also take the opportunity to talk about the government's process, which I think has seen what is unprecedented in the area of health care—that is, handing over sensitive information to a for-profit company before the legislation has even been passed; to say to Telstra: 'We want you to manage this sensitive information. We need legislation to do it, but we're going to sign a contract with you anyway, because we think we'll get it through.' The government's arrogance is remarkable in assuming that this would simply be waved through the parliament and to sign on to those contracts with Telstra. It was a $220 million contract. Just remember that we are not talking small beer here; we are talking about a $220 million contract over five years, with the possibility to extend, without first getting legislation through the parliament and without having the opportunity to scrutinise that legislation. As I said earlier, we have now discovered that there are a number of flaws with the legislation as it was drafted.

There is a fundamental philosophical point here—that is, should sensitive information belonging to individuals be maintained by a for-profit telecommunications company when what we have seen up until this point is an understanding that the appropriate place for that is within government and for-purpose, not-for-profit organisations. The Australian Greens think this is the core business of government and it should be delivered in-house. We think it should be the responsibility of government or for-purpose NGOs who are established precisely for the reason of delivering and maintaining these registers. We do not like the idea of this information being held within a for-profit company. It does set a precedent that at the very least the government should have waited until the legislation had been passed. The Australian Greens want to see good legislation passed that sets up a strong record. For that reason, we will support the opposition's amendments to increase those penalties and we look forward to the implementation of a robust national screening register that will ensure that we improve the health care of all Australians.

Debate adjourned.