Tony Zappia (Makin, Australian Labor Party, Shadow Parliamentary Secretary for Manufacturing) Share 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.

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