Human Fertilisation and Embryology Debate
Full Debate: Read Full DebatePeter Bone
Main Page: Peter Bone (Independent - Wellingborough)Department Debates - View all Peter Bone's debates with the Department of Health and Social Care
(9 years, 9 months ago)
Commons ChamberI thank the hon. Gentleman for that intervention. It was clear last night when we heard from the affected families that they wanted that choice, and these regulations very specifically only apply to those families that are affected by mitochondrial disease.
I am going to finish my point, if I may.
In the intervening years the science and ethics of these techniques have been extensively debated. The Nuffield Council on Bioethics and the HFEA held extensive public consultations in 2012 and identified broad public support for the use of these techniques. There have been three expert scientific review panels—in April 2011, March 2013 and June 2014—all of which found no evidence to suggest that the techniques are unsafe for clinical use, and only last week a group of eminent scientists and experts in medical ethics, including Professor Sir John Sulston, Baroness Warnock and Sir Paul Nurse, wrote to The Times urging Parliament to approve the new regulations. They argued that the question parliamentarians must consider is not whether we would want to use this technique ourselves, but whether there are grounds to prevent affected families from doing so. I again reiterate what we have heard in the representations from families, and particularly women of child-bearing age: they want the opportunity to use these techniques.
The hon. Lady is making a very good speech and is trying to make it balanced. She talked about last night’s meeting, which I understand went on for quite some time, and there has been a lot of debate outside this Chamber, but is she satisfied that we come here to the Chamber this afternoon with only 90 minutes to discuss this? Would it not be better if we were to withdraw this motion today and come back with more time to debate it next week?
Unfortunately, it is not in the Opposition’s gift to determine the time allocated for these debates. I would have welcomed further debate, and we had an opportunity in a previous Backbench Business Committee-initiated debate to discuss these matters.
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.
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.