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Conduct of the 2010 federal election and matters related thereto

CHAIR —Welcome. The committee does not require you to give evidence on oath, but the hearings are legal proceedings of the parliament and have the same standing as proceedings of the respective houses. We have received your submission to the inquiry, dated 10 February 2011. If you wish to make an opening statement, please feel free to do so, then we can cut to the chase.

Prof. Loff —This is the outcome of some difficulties that not only we have experienced but also a number of our colleagues both here and interstate have experienced in gaining access to data from the Australian Electoral Commission. There seems to have been a change in the way in which requests for access to the roll for the purposes of medical research are currently being handled, as opposed to how they were handled a couple of years ago. As a consequence, projects which have previously been granted access to data on the roll have now been told they are no longer able to gain access to data.

CHAIR —Let’s try and get to this pretty quickly. Have you got a letter stating why you were denied access?

Prof. Loff —Yes, I have got several letters. I can give them to you.

CHAIR —I think it is important for us to get a thrust as to why it is you have been denied access. Who signed those letters?

Prof. Loff —Paul Pirani.

CHAIR —You say there has been a change in recent times. When exactly did that change occur?

Prof. Loff —I could not say, but certainly I am aware of studies that were refused access from about September or October last year.

CHAIR —For the record, can you just tell us why it is you were refused?

Prof. Loff —We were refused because it was judged that our research was not medical research.

CHAIR —And Mr Pirani made that assessment?

Prof. Loff —Yes, he did.

Senator RYAN —What is the project?

Prof. Loff —Research funded by the National Health and Medical Research Council. It is trying to establish what the Australian population believes is the right balance to be struck between protecting privacy and conducting medical research.

CHAIR —Am I able to have a look at those letters from the electoral commission at this stage?

Prof. Loff —Absolutely.

Senator RYAN —As a lay person, not trained in science, I can sort of understand how that could be considered not to be medical research. Call me old-fashioned. As an arts graduate, I might have a view of people in lab coats with test tubes. Why is it that, apart from it being funded by the NHMRC—and I have read your submission that you think that is one way we could do it—do you consider it to be medical research in a commonly understood way? Or do you want something broader than what would be commonly understood as medical research?

Prof. Loff —There are a couple of ways of understanding whether or not this is medical research. It is certainly not testing a drug.

Senator RYAN —I appreciate that.

Prof. Loff —But the consequences of the results of this study for the conduct of medical research are potentially extremely significant. Clearly the NHMRC were taking a broader view, because it is ultra vires for them to fund me and if they considered it as something other than medical research it was open to them to say this was not appropriate and I should have applied to the Australian Research Council. We actually then sought an opinion in writing from the NHMRC as to whether or not this should be viewed as medical research and received an opinion in writing that, in their view, it was.

Senator RYAN —I was playing devil’s advocate there. Again, I appreciate that that is a wide term. I suppose I would view your study as on the periphery of medical research, in the sense that it is, for the reasons you outlined, an enabling issue. You obviously want this to enable medical research.

Prof. Loff —Yes.

Senator RYAN —So it becomes a question of whether it is a necessary tool in the medical research artillery.

Prof. Loff —I will give you another example of research in our school that was refused. I am just reading from a colleague: ‘This was an unsuccessful request to the AEC for a random sample of households in the south-eastern suburbs for the purposes of surveying information about household greywater use following the testing of greywater samples from a subset of households for faecal contamination and then doing a risk assessment for potential infection risks.’ That was also judged not to be sufficiently close to medical research to be granted access to the AEC database.

Prof. McNeil —Medical research is a pretty wide term, and that was judged not to be medical research and yet there are very big health issues related to the use of recycled water. To be able to understand just what those health risks are, if there are any, or to provide the evidence that there is no risk, we have to do research like this to find out how many people are using it, how much they are using and so on. So to us that is just part of the big spectrum of medical research.

Senator RYAN —I appreciate that, and I can see the case you are putting. With the first one, which I suppose provoked your visit here, maybe it is the politician in me but I am thinking it is more about the public opinion of medical research than about medical research. Having been involved in the pharmaceutical sector, I appreciate how your sector works. Our job is to strike a balance, and the AEC’s role—not illegitimately—is to protect the integrity of the roll and, to a certain extent, the privacy of citizens. We may or may not be moving to a situation where people do not get a choice as to whether they appear on the roll. Do you think it should effectively be up to the NHMRC when they fund something whether or not people are allowed to access the AEC database? Is that what you are proposing?

Prof. McNeil —We recognise that there has to be some sort of governance over access to the electoral roll. No-one would want every person to have access to do anything. Basically the point we want to make is that access to the electoral roll is essential if we are to draw random samples. Therefore we would advocate that there be a two-step process. If a study is funded by a reputable funding agency like the National Health and Medical Research Council, the National Heart Foundation or whatever, that is the first step. The second step is that it goes through an ethics committee and has ethics committee approval. I chair the Alfred Hospital ethics committee and our whole job is to weigh up the value to society versus the impingement on an individual. If a reputable ethics committee makes that judgment then we think that it should go through to a process by the Electoral Commission to actually weigh it up according to a set of defined criteria so that they can make a systematic judgment and one that is in the interests of the Australian population.

Senator RYAN —You are inadvertently proving a point that I alleged may happen earlier—that is, as the electoral roll becomes the single most effective or comprehensive database of people in Australia, it gets used for other purposes, which is one of the things I expressed concern about. I am more familiar with ethics committee approvals for phase 1, 2 and 3 medicine trials because of my background. All of those were generally for people who were volunteers, or you might be using a hospital database—as occurred to a friend of mine who was contacted by the Royal Women’s Hospital for a vaccine trial—which the ethics committee oversees. But they are all data sources that are within the ambit of that ethics committee. I suppose my concern would be that the NHMRC and your ethics committee are not geared up for the privacy concerns of a database that is not actually in their control.

Prof. Loff —I think we are not arguing that point. However, the process has become dependent on the exercise of the discretion of one person who I could not say for sure but I assume does not have a background in medical research. It is his determination alone that is really guiding what research will and will not be done in terms of being the gatekeeper for the electoral roll.

Senator RYAN —I appreciate that. I suppose my concern is going the other way, which is that the Chief Legal Officer of the AEC has expertise in electoral law, which is his prime and overwhelming duty, and he manages the legal framework that oversees this database. I would not necessarily want there to be people who are trained in medicine but had no concept of electoral or privacy law making decisions about how we access that database. I think that might flip the pendulum the other way.

Prof. Loff —But there is certainly the possibility of forming some committee where that expertise that is focused on the protection of the electoral roll and expertise in medical research comes together. The electoral roll has no comparison for the purposes of medical research in this—

Senator RYAN —That is actually my fear. It is illegal not to enrol to vote and we are soon going to start drafting people out of databases all around the country and putting them on the roll whether they like it or not. I am uncomfortable with that myself, but I have then got to find a way to accommodate this public need—and I know the good work that is done in health and medical research, particularly in public health—with the concerns that people have.

—Can I just make the point that what we are saying is not that an ethics committee should decide whether a person has access to the electoral roll. From the tone of your question, I think that was what you thought I might be saying. I am saying that is an important barrier because the ethics committees are charged with making a judgment about the value of the research versus the impingement on an individual. If it has passed that hurdle then my feeling is that it would be appropriate to go up to a system set up by Electoral Commissioner which has a set of principles that can determine then whether there is access. One of those principles is that the application has to have gone through the ethics committee process. If there is a systematic process at that stage where we all know what it is and it can be debated, a systematic set of rules, that would be of enormous help to Australian researchers.

Mr SOMLYAY —Do you know if there is any consultation between the AEC and the NHMRC or Health and Ageing?

Prof. Loff —Yes, there was. Having been advised that our research was not medical research, I contacted the NHMRC to find out what their view was. I was then sent an email indicating that the research was medical research, which I shared with Mr Pirani. Mr Pirani then called I think Gordon McGurk from the NHMRC. I believe—I cannot say for sure; you would have to check this—there was a meeting. I understand that Mr Pirani advised the NHMRC that the AEC’s interpretation of medical research was more limited than that of the NHMRC.

CHAIR —My understanding from reading the minister’s letter of 10 November is there is in paragraph 1.3 of the NHMRC guidelines the following statement:

Agencies may always decline to disclose personal information for use in medical research even where the medical research has been approved by an HREC in accordance with these guidelines.

That determination that it is medical research does not bind the AEC. What we have here is an officer of the AEC operating in accordance with section 90B of the Commonwealth Electoral Act. He has a particular interpretation, which is obviously a narrow interpretation, of what constitutes medical research. He has taken issue from what I see with these letters in terms of the nature of your research as to whether on the face of it it comes within medical research.

This is something we are going to have to look at. You have raised the issue with us. We do not have the power to say they should release to you the documentation. In the last parliament we had evidence before us as to who, if any, should have access to the electoral roll. Its release is highly guarded. It is something we are going to have to take forward. I note that some of your correspondence is subsequent to your submission to us as a committee in terms of some clarifications. I also note that further issues appear to have been raised in that subsequent correspondence.

Prof. Loff —Which have all been dealt with.

CHAIR —I notice you have a later letter dated 5 April 2011 to Mr Pirani. I am looking at the last letter.

Prof. Loff —Our last letter contains the opinion of the Monash ethics committee. We drafted a deed poll for the organisations which were going to match the—

CHAIR —As I said, what I have here is a copy of a letter of 5 April 2011.

Mr SOMLYAY —Is that determination by the AEC reviewable by the AAT or the Ombudsman? Have you explored that?

Prof. Loff —I do not think there is provision for it under the act, but it probably is something that—no?

CHAIR —I would have thought it had to be reviewable.

Prof. Loff —As I am advised, apparently not. I can provide you with this. This is our most recent letter—that is 7 April—to Mr Pirani, and the attached documents. I do not know if you have all the attached documents.

CHAIR —I have a number of things. I am going to hand them back to you. I just needed those to know that there are some ongoing. So what you are in effect saying, or what you are being advised from the back, is that the AEC’s decision is a final decision; it is not reviewable? Well, let me tell you that that is something that I am not happy with—

Mr SOMLYAY —Hear, hear.

CHAIR —because my view is that if someone makes a determination they are entitled to do that, but I am a great believer in having a system of review. That is something we will follow up.

Senator RYAN —On your proposal to have a sort of first gate which is, say, the NHMRC or another reputable research organisation: as a way of addressing some of the privacy concerns—because some of those research organisations are effectively private; they are not Commonwealth bodies like the NHMRC—would it satisfy your concerns if we did not have a power for the minister to add other organisations by regulation and just stipulated that it was, for example, the NHMRC or any other group you suggested? My concern is that you give these powers to ministers, things get added, they are not accountable to the Commonwealth parliament and something can go wrong and we have no sense of oversight.

Prof. McNeil —Yes, the difficulty there, I think, is that the NHMRC, as you know, already only fund one in five worthwhile projects, and a lot of the projects they do not pick up get picked up by other very reputable granting bodies like the Heart Foundation and so on. The NHMRC and the ARC have a list of what they call ‘Commonwealth competitive granting bodies’, and I think that would be a more useful list as a first step. If anything is funded by one of them, it is nearly always going to be highly competitive and highly scientifically valid. And then, if it went through the ethics committee step as well, from a reputable ethics committee, I think that would be a very good filtering system, because anything that gets through there must be high quality, and an independent group—

CHAIR —There is an argument against that. I am not disagreeing with what you are saying, but what I just read out a minute ago, of itself, does not mean—it is not like a conclusive certificate.

Prof. McNeil —No, absolutely.

Prof. Loff —No, no.

CHAIR —It needs to be assessed. My concern is that I do not want to sit in judgment on what the officer of the AEC has done. I have read his letters. He has not been backward in saying what the difficulties are as he sees them. I am not saying that he is necessarily correct. My concern is a process that allows you to test his decision—

Prof. McNeil —That is right, yes.

CHAIR —while retaining the integrity of the process that protects the roll in terms of its disclosure and restricts it to medical research. That is where my head is at, and I think members of the committee are the same. We will follow it through.

Senator RYAN —It is odd that it cannot be tested, I suppose.

Prof. McNeil —The process, though, needs to be a little bit better, a bit more systematic.

CHAIR —I am quite happy if you want to put a supplementary submission to us suggesting a process that might operate that you think is good for everyone when it comes to medical research.

Prof. McNeil —Yes, we would like to do that.

CHAIR —I would welcome that.

Prof. McNeil —Okay.

CHAIR —I am suggesting to you that that is where we are heading towards. I do not think it is appropriate for us to be the adjudicators on the quality of—

Prof. Loff —No, I would not ask that of the committee. The purpose of coming here was not to explore this particular proposal; it was more to raise the general issue that is affecting not just my research but the research of colleagues as well.

Senator RYAN —And presumably, if you did develop a model, you would not be concerned if, for example, we contacted the Privacy Commissioner to talk through some concerns?

Prof. Loff —Absolutely—extremely comfortable.

Prof. McNeil —You can see where were coming from in, in a way, though.

Senator RYAN —I can.

Prof. McNeil —When we get a letter back to say that studying how many people are using recycled water is not medical research at all, when we know that it is a massively important health problem, then we do feel as if we have got an impasse.

CHAIR —I understand that, but there is a subjective-objective test. There are a whole range of things, and that is where—

Prof. Loff —I just feel I should tell you a little bit about myself, because that might perhaps give you some background as to how seriously I also take the issue of protection of privacy.

CHAIR —You do not have to.

Senator RYAN —We take that as granted.

CHAIR —We take that as a given in terms of where you are from and the whole lot. That is not the issue. The issue here is what you see as a very narrow definition of medical research. I am not going to sit here and adjudicate on whether that definition is right or wrong, but I believe as a matter of course that you are entitled to have that looked at and reviewed. That is my personal view, and I think that is the view of my colleagues. There is that aspect. That is what we are asking in relation to the supplementary submission. I am of this view in a number of other areas, but also we also want to protect the electoral roll; we do not want to open up, for all and sundry, access to the electoral roll, because that will create other problems.

Prof. Loff —Absolutely.

Prof. McNeil —We agree with that.

CHAIR —You have come in good faith and we are happy to take it on board if you can do a supplementary submission to us as to what you think should be a process for medical researchers—the hoop they have got to go through to be satisfied that there has been a proper determination.

Prof. McNeil —We would be very pleased to do that.

CHAIR —As my colleague here says, we will run that past the Privacy Commissioner as well if we are going to come up with some recommendations. We will also ask the Electoral Commissioner. I would have thought the officer is acting in good faith. As I said, the reason I am confident of that, even if you might not agree with his decision, is that he has been quite prepared to lay it out for you and tell you what the hurdles are. He has not been a shrinking violet or hidden behind ‘I’ve knocked you back; bad luck.’ So there is that aspect of it.

Prof. McNeil —‘Bad luck. It’s there’!

CHAIR —It is his view. But, at the moment, from what you are telling me, his view is the final view.

Prof. Loff —That is right.

CHAIR —That is what I am concerned about.

Prof. McNeil —Thank you very much listening to us.

Prof. Loff —We will put something together that, at least from our perspective, seems to be a fair process.

CHAIR —I am not saying we will accept it all. In the excerpt that I read out to you, there is an argument that that should not of itself be like a conclusive certificate; it gives you the tick to have access. So all those things work both ways. You need to be aware of that, because those are the guidelines that are there at the moment. So just bear that in mind as well. You will get a copy of the transcript of evidence, which you can correct. Feel free also, as I said, to make a supplementary submission.

Resolved (on motion by Mr Melham):

That this committee authorises publication, including publication on the parliamentary database, of the transcript of the evidence given before it at public hearing this day.

Committee adjourned at 1.54 pm