The amendments that I and other colleagues have moved through the committee stage have pretty much solely been focused on trying to improve the accountability, monitoring and oversight of what are revolutionary and novel technologies. Many of the amendments have been aimed at providing more oversight from this place, in this institution. I’m obviously disappointed that we have chosen not to strengthen our arm in providing more oversight but instead leave it effectively to the scientific community to make these decisions.
I am intending here to move another set of amendments which would not really provide much oversight or monitoring but would at least provide to us some more information on what is occurring in these trials than what is currently prescribed in this bill. The bill, as amended in the House—and I do give credit again, as I did in the second reading speech, to Mr Kevin Andrews. He and others pushed for some more reporting, and I thank the government for agreeing to those amendments and providing some additional reporting than what was there originally. However, the reporting that is there now on a six monthly basis does not have to prescribe any particular information, so there are no guarantees that this will include details of how many trials have occurred, how many participants have gone through those trials, how many have been approved, whether or not there have been adverse events associated with the donation techniques or even what types of donation techniques have been used, and we’ll come to those later in other amendments. I don’t think it’s appropriate that, for something as novel and revolutionary as this, it should ultimately be up to the people that are regulating this area what information they provide us—and I use that with a lower case ‘r’ as they’re not a regulator exactly; they’re overseeing this area.
The CHAIR: Senator Canavan, it may assist the chamber if you move the amendments. I’m guessing they are the ones on sheet 1520 revised.
Senator CANAVAN: I’m happy to move those at the end of my contribution. I do intend to do that, but of course I would like to explain the reasons for them, and I’m sure we’ll have a discussion.
We need to make sure here that the regulators do provide the information so we can assess what’s going on. This is really important, because we’ve seen from the UK experience there hasn’t been a lot of information provided about what’s going on. In the UK, they legalised mitochondrial donation techniques in 2015. We have extremely limited information from the UK about the outcomes of the donations that have occurred to date or at least that people have been going through them. We don’t even know if mitochondrial donation has occurred in any real sense. We know that I think 20—maybe 21—participants have been approved to proceed through the process and there have been eight, apparently, who have actually received some services. But, as I say, we’re not sure of the content of those or what has occurred or the outcomes. To my mind, it is completely inadequate that after almost seven or eight years now we have not received information on the barest of details about what is occurring in the UK. It’s an issue here for us. It was an issue in the Senate inquiry that I participated in that there wasn’t a lot of detail about exactly how these revolutionary techniques have been used in the one jurisdiction in the world where they are legalised.
As I and some other colleagues thought through this, we thought that we should actually try to specify, as a parliament, at least some minimum information that should be in reports. We have decided annual reports are fine. As I mentioned, the government had decided on six-monthly reports, but, given the slow pace of these technologies overseas, we didn’t think six-monthly reports were absolutely necessary. So an annual report would be fine, but we do think it should require some minimum information that can provide people with an oversight of what is occurring and how these are being developed.
