Human Fertilisation and Embryology
Debate between Robert Flello and Peter Bone(9 years, 2 months ago)
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Robert Flello
It is simply that this legislation will open up research that is illegal, as I shall describe in a moment. I also think there are greater concerns about generations down the line.
The EU clinical trials directive, which applies to all clinical work, states:
“No gene therapy trials may be carried out that result in modification to the subject’s germline genetic identity.”
The HFEA itself has said that this procedure does. In the legal opinion on the regulations, Lord Brennan QC has said that they are caught by the directive and that they are
“likely to be in breach of EU law”
on clinical trials.
The Department of Health examined the legal opinion but rejected it, saying that the licence will not be granted for clinical trial but for treatment and therefore will not be caught by that law. Apparently, this is not about clinical trials and furthering the science but about going straight for treatment.
Lord Brennan’s opinion anticipated that. He set out the relevant paragraphs from the 2011 report on safety from the review panel set up by the Secretary of State to monitor the procedures to the HFEA, which said:
“Once assessed as safe to use in clinical practice, the panel strongly recommends that permission is sought from the parents of the children born from MST and PNT to be followed up for an extensive period”
and that such permission should be sought from the children themselves once they are old enough. In the case of females, that should ideally be to the next generation. Those recommendations should also apply to pre-implantation genetic diagnosis for mitochondrial DNA genetic disease.
Robert Flello
I think they are doing that because the legislation on the EU clinical trials directive will be tightened up even more next year.
Until knowledge has built up that says otherwise, the panel recommends that any female born following MST or PNT should be advised, when old enough, that she herself might be at risk of having a child with a significant level of mutant mitochondrial DNA. The HFEA is putting that child and, if they are female, subsequent generations at risk.
I have only a minute left but my speech would cover more than that time. It is nonsense to try to ram through this statutory instrument in no time at all. This is not about whether we should be helping families afflicted by this appalling disease but about saying we should get things right. We should ensure that this is done properly, with proper parliamentary scrutiny. The ultimate role of Government is to protect the safety of the citizens of this country and the regulations do not do that. They open the gates to a procedure that is completely untested, with no pre-clinical trials or clinical trials. The regulations talk about going straight to treatment and that has all been done so that the Department of Health can wangle its way around the legislation, or so it thinks. This is terrible. It is not good for the families with this chronic, horrible disease. We need proper and considered research. If these regulations were on genetically modified crops, we would all be up in arms. That is what is happening here.
Business of the House (Thursday)
Debate between Robert Flello and Peter Bone(13 years, 4 months ago)
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Robert Flello
My apologies. It is good to see the hon. Gentleman in his place; he has been a little bit on and off over the past few hours. [Interruption.] I hope he is saving himself for my speech later as well.
My point, of course, relates to the motion before us this evening. Would my hon. Friend the Member for Newcastle-under-Lyme (Paul Farrelly) care to comment on the fact that there are a huge number of organisations on which the House relies for information, support and knowledge that wish their views to be represented through their Members of Parliament, but that under the motion we will not have time to discuss properly the issues that they have raised with us?