Kerry Nettle (NSW, Australian Greens) Share this | Hansard source

I might help to get things rolling by moving the Australian Greens amendment (1) on sheet 5112:

(1)    Schedule 2, page 19 (after line 26), after item 18, insert:

18A After paragraph 21(4)(d)

Insert:

           (da)    the capacity of any scientific advances to be delivered through the public health system and or to reduce the global disease burden;

I will explain what this amendment does. Currently, under the existing Research Involving Human Embryos Act 2002, there is a list of things that the NHMRC, the National Health and Medical Research Council, must consider when making a decision about granting licences to people who wish to do stem cell research. One of the things that they must have regard to is the likelihood of significant advancement in knowledge or improvements in technologies for treatment as a result of the use of excess ART embryos proposed in an application. What this amendment does is insert another issue which they must have consideration of.

I will read out the amendment. I think it is reasonably self-explanatory but I will talk some more to it. It says that the licensing committee of the NHMRC, when making decisions about granting applications for people to do research using stem cells, must consider ‘the capacity of any scientific advances to be delivered through the public health system and or to reduce the global disease burden’.

This proposed amendment was suggested to me by an academic—I think she is from the University of Wollongong—who I had been discussing this issue with. As senators will know, because I indicated this in my speech during the second reading debate, my concerns—concerns that my fellow Greens senators share—relate to the privatisation and commercialisation of this research. So, in all of my approaches to this debate and in all of my amendments I have sought to inject the public domain, as much as possible, into the legislation. It is a difficult thing to do. I acknowledge and accept that it is difficult to try to ensure that the research stays in the public domain. It is not at the moment, and it is a hard thing to do.

I moved a series of amendments in 2002 around this particular issue. In 2002 I moved amendments which said that the licensing committee needed to look at the issue of public interest. That created a difficulty for some people, because people define the public interest very differently. It meant that people had all sorts of different interpretations of what I meant to include by using the term ‘public interest’. So in my deliberations this time, and in wanting to put forward amendments that would allow public concerns to be detailed, I have tried to narrow what I mean by ‘the public interest’ to be public health.

People have a whole range of views about what is in the public interest but I am talking about the issue of health and ensuring that public health is addressed and is central to the research. This goes to the issue that I have spoken of, which is that I would like to see that any benefits that come from stem cell research are able to assist in reducing the global disease burden and in delivering benefits to people through our public health system. That is the philosophy that I bring to how I would like to see this research enacted.

Some people have concerns about this research because they are wary of the profit motive driven by biotech companies that operate in this area, and what they may mean and where it may go. So perhaps these amendments, which seek to ensure that any benefits that come from this are in the public interest and relate to public health, can address some of those concerns that people have.

The way that this particular amendment tries to do that is by talking about this idea of the global disease burden. As we all know, the global disease burden is great, and there are a whole range of diseases that contribute to the global disease burden. This amendment is designed to allow the NHMRC licensing committee to prioritise research that will reduce that global disease burden and provide research benefits and possible cures for diseases that wreak havoc in developing countries—malaria, TB and other things that cause so many needless deaths in our community.

This amendment is not designed to say that the NHMRC should only grant licences to people who are proposing to focus on a particular set of diseases. It is not designed to do that at all. It is designed to give the NHMRC licensing committee the opportunity, the option, of prioritising research that is focused on that. I am not trying to say that other research should not happen at all. I am just trying to give the NHMRC a mechanism that they can use to say, ‘We think that this particular type of research should be supported, because we can see the benefits that will come to the whole of the global community by us being able to have treatment, cures or research occurring into these particular diseases.’

The other part of the amendment is about delivering scientific advances through the public health system. This comes to the equity issues. If people have concerns around technology being driven by biotech companies, I do not want to see any benefits that come out of stem cell research only being available to the wealthiest individuals for a massive amount of money. I would like to see any benefits that come from this being able to be delivered across the board. This does not say—and perhaps it is really important that I point this out—that all benefits that derive from stem cell research should be delivered through the public health system. It does not say that. Various senators have made the comment to me that this could cost a lot of money. This amendment does not say that everything has to be delivered through the public health system. What it does is give the NHMRC the opportunity to prioritise research that can be delivered through the public health system.

I put this proposal to a number of witnesses who appeared before the Senate committee inquiry into this legislation to ask them whether or not it was feasible, whether or not it was workable. I was very pleased to hear the comments from the CEO of the NHMRC, Professor Warwick Anderson, who said that if the parliament wanted to put this kind of consideration into the legislation then the NHMRC could enact it and ensure that it was done. I have to keep stipulating that none of this is to say that the NHMRC licensing committee should only give licences to people who look at particular diseases or should only give licences to people who say they will deliver it through the public health system. That is not what it is about; it is just giving them the option to prioritise research that has the potential to deliver that.

One of the issues that people addressed—I raised this in my second reading contribution, and I will raise it again—is that, given that embryonic stem cell research is currently in its early stages, it might be quite difficult for researchers to say, ‘This is what my research is going to produce and therefore it can be delivered through the public health system.’ I accept that. I recognise that it is difficult to do. That is why I have sought to do it this way, which is not to be prescriptive and have the NHMRC licensing committee say, ‘You can only get a licence if you’re going to deliver this thing, it will be available through the public health system and it’s going to be for malaria.’ That is not my intention at all. It is about giving the licensing committee the capacity to do that. That is because I want decision makers, who play a very important role in the whole regulation of this industry and this research—and, currently, the body that does that in Australia is the NHMRC licensing committee—to be able to look at public health benefits and look at reducing the global disease burden.

That is what this provision is in there for. It requires the NHMRC to have regard to these matters. It does not require them to make all their decisions on the basis of them; it just requires them to have regard to them. They currently have to have regard to the likelihood of advances occurring. Clearly, we want the NHMRC in this and in other areas to make decisions on the basis of whether or not they think there are technology and benefits that can be delivered. I am sure we all want them to be able to support research proposals that seem to be able to go somewhere and contribute and deliver benefits. But this brings in that additional level so that, when doing so, they can also look at areas of public health, public interest and the importance that plays. It does not require them to do anything; it just allows them to prioritise and to look at these issues, because there is a range of issues that the NHMRC looks at.

It was interesting during the Senate inquiry that there were some people who were perhaps not quite clear on what the NHMRC do look at. They were asking, ‘Don’t they already look at that?’ They thought that, when the NHMRC were making decisions about which research to fund, they already looked at exactly the issues that I am trying to make sure they do look at. So there did seem to be some lack of clarity about whether perhaps the NHMRC do already look at these issues. It was a shame that there were not more witnesses there from the NHMRC to explain that detail. What this does is stipulate that, yes, we do want the NHMRC to look at the issues of public interest and of public health.

I am very happy to talk to any and every senator about what these amendments do—what they are intended to do, what their purpose is about—and I very much hope that senators are able to support these amendments. I suppose the reason I have had to go down this path with these amendments, and indeed the amendments that I moved in 2002, is that, unfortunately, in Australia the debate now and in 2002 has been around the issue of whether or not we should go down the path of stem cell research and people’s concerns with or support for that research. That has been, understandably, so central to the debate that it has not allowed us to have the discussion that I for one think we should be having, which is: if the research goes ahead, how do we think it should go ahead? That is what I am seeking to do with these amendments. I have the view that it should be done in the public domain as much as possible, that we should ensure that public health is at the forefront of where the research is going and what people are intending to achieve. That was very central to the debate that occurred in the United Kingdom around stem cell research. As a result of that they have their national stem cell bank, which plays an important role in keeping the research in the public domain.

I think it is really great that we can have that discussion now. I have to say I am pretty disappointed that that has not been able to be central to the debate that has occurred so far. I understand there are other issues that people need to consider, and it is important for them to do so. I appreciate that people have been spending a lot of time doing that. But now, if we can have the opportunity to talk about how any research should go ahead, and what views people have about whether that should be under public control and to what degree, I think that would be really helpful for the debate.