argyrotsipi/train-dataset huggingface dataset:
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Jane Ellison (Conservative, Centre-right): No, I cannot accept that description. I recognise that my hon. Friend has objections to the procedure, but I do not recognise his description. Nuclear DNA is not affected; mitochondrial DNA is different As well as paying tribute to the scientists at Newcastle university, I want to pay tribute to the Lily Foundation, a charity founded by families who have lost their children to serious mitochondrial disease, and who have shown us the human suffering behind this scientific advance. Many right hon. and hon. Members, like me, have constituents who are affected, and I am sure that some Members will talk about such families in their own speeches.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Steven John Baker (Conservative, Centre-right): Does the Minister accept that a person born as a result of a mitochondrial replacement would not pass on mitochondrial disease to their successors? In other words, the germ line would have been modified so that the mitochondrial disease had stopped with their parents. It seems to me that if she accepts that the germ line has been modified, what she said a few moments ago cannot possibly be right.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Jane Ellison (Conservative, Centre-right): I know my hon. Friend is going to make her own contribution. If she will forgive me, I want to outline for the benefit of Members less familiar with the regulations their detailed content Turning to that detail, the regulations are made under the powers in the Human Fertilisation and Embryology Act 1990. They were added to in 2008 to permit mitochondrial donation to prevent the transmission of serious mitochondrial disease, anticipating the advancement of science to this point. Regulations 3 to 5 set out the circumstances for mitochondrial donation techniques using eggs; regulations 6 to 8 set out the circumstances for mitochondrial donation using embryos. They would allow the use of the two techniques that have been subjected to extensive UK-wide review and consultation: maternal spindle transfer and pro-nuclear transfer Regulations 11 to 15 and 19 set out the information that can be provided about a mitochondrial donor to any child born from the donation and information to that donor. Regulations 16 and 17 set out special provisions around consent that were identified through the public consultation process. These regulations apply UK-wide, and the devolved Administrations have been kept informed of development and progress.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Richard Quentin Fuller (Conservative, Centre-right): It is clear to many of us who have spoken to our constituents that this procedure will make a huge difference to individual families. There is, in a sense, an ethical gateway to the framework that will allow the scientists and medical experts to move forward. Can my hon. Friend tell us why there appear to be a number of people who, for ethical and religious reasons, are quite close to agreeing with the Government but have not quite agreed yet, and have asked for more time?
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Jane Ellison (Conservative, Centre-right): I want to make a little progress, but I may take another intervention later. I am conscious that many Members wish to speak There has been much discussion of the safety of mitochondrial donation techniques. As I have said, three reports have been produced by the HFEA-convened expert panel during the current Parliament. On each occasion, the panel has concluded that there is nothing to indicate that the two donation techniques are unsafe. Although the panel has recommended that further experiments should be conducted, it expects such research to support the conclusions that it has reached so far In public discussion, there has been some misunderstanding of the term "critical", which was used by the expert panel. That is helpfully clarified in the HFEA’s introductory briefing note, which has been endorsed by the panel and which makes it clear that the experiments could take place before or after the approval of regulations by Parliament. The chief medical officer sent a copy of the briefing note to all Members yesterday.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Jane Ellison (Conservative, Centre-right): I am sorry. I know that many Members wish to intervene, but I am trying to leave time for Back-Bench contributions If the regulations are passed by Parliament, the HFEA will introduce a robust regulatory process, as it has in other areas of fertility treatment. The regulations would also establish important safeguards through the HFEA’s own licensing procedures. Before licences could be issued to providers of mitochondrial donation, they would have to demonstrate that they could carry out the procedure safely and effectively. Each provider would need to be licensed, and treatment for each patient would be approved on a case-by-case basis. Decisions would be based on the scientific evidence and advice that were submitted to the licensing committee. The HFEA is highly respected across the globe as a model for the regulation of fertility and embryology treatments and research. Many other countries do not have such a framework I recognise that some Members disagree in principle with mitochondrial donation, and I respect their point of view, although I do not share it. To those who do not disagree in principle I have sought to demonstrate—as we have sought to demonstrate over the years of expert panel reviews and further consideration—that all reasonable and rigorous steps have been followed to reach the point at which Parliament can be asked to make an informed decision about whether to allow these techniques to be licensed on a case-by-case basis. It is a bold step for Parliament to take, but it is a considered and informed step This is world-leading science within a highly respected regulatory regime, and for the families affected it is a light at the end of a very dark tunnel. I commend the regulations to the House.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Guy Thomas Opperman (Conservative, Centre-right): The hon. Lady and I both attended the meeting last night, which was very productive and helpful. Does she agree that this is about choice for the families? I have constituents who have this particular disease and constituents who work at Newcastle university, and what we are trying to do is provide a scientific way forward, under a highly structured and licensed regime, to alleviate these particular families’ suffering.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Edward Julian Egerton Leigh (Conservative, Centre-right): On the question of safety, does the hon. Lady not consider it significant that the Food and Drug Administration in the United States said that it was not clear that the scientific procedures were effective and safe? The FDA, of course, refused to allow the use of Thalidomide while we did, and the rest, as they say, is history.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Cheryl Elise Kendall Gillan (Conservative, Centre-right): I am most grateful to the hon. Lady for setting out a balanced case. Can she clear something up for me? I understand that there are two sources of mitochondrial disease: the DNA in the nucleus as well as the mitochondrial DNA. Can she confirm that mitochondrial disease from the nuclear DNA will remain in our population even after this treatment is licensed?
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Fiona Claire Bruce (Conservative, Centre-right): I want to speak against the Government motion, and I draw the House’s attention to my alternative motion in part 2 of the Order Paper—page 54—although it is not votable Human mitochondrial disease is a dreadful condition and, as a caring society, we must do all we can to address it, and do so as sensitively as we can for those families affected by it. As a caring society, however, we must also do so in an ethical manner and with proper regard for safety. I believe that the regulations we are considering today fail on both counts—ethics and safety—and that they are inextricably interlinked Let me be straightforward: I do oppose these proposals in principle. However, that should not prevent my concerns regarding their safety from being given a fair hearing. One of the two procedures that we are being asked to sanction today—pro-nuclear transfer—involves the deliberate creation and destruction of at least two human embryos, and in practice probably more, to create a third embryo, which it is hoped will be free of human mitochondrial disease. Are we happy to sacrifice two early human lives to make a third life?
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Fiona Claire Bruce (Conservative, Centre-right): What we are talking about is a particular process, which we know—with certainty—will destroy embryos. That is what I am addressing. As I say, this technique will involve the permanent alteration of the human genetic code. The Nuffield Council on Bioethics, which was cited by the shadow Minister in support of her arguments, says that these techniques are "a form of germline gene therapy." This alteration will be passed down generations. The implications of this simply cannot be predicted. However, one thing is for sure: as someone has said, once this alteration has taken place and once the genie is out of the bottle, and once these procedures that we are being asked to authorise today go ahead, there will be no going back for society, and certainly not for the individuals concerned.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Fiona Claire Bruce (Conservative, Centre-right): I was indeed surprised, but in a sense that is why those who have made the case for much more parliamentary time and debate on this issue are quite right There will be no going back for society and certainly not for the individuals and children involved. My hon. Friend the Minister said that we have taken all rigorous steps before bringing this matter to the House, but it is profoundly concerning that the outstanding preclinical trials, as recommended by the HFEA panel, have still not been undertaken, written up and peer-reviewed. Will my hon. Friend confirm that, setting aside the completion of preclinical trials, there have been no clinical trials of these procedures, that there will be no clinical trials of them and that, in effect, if we pass the regulations the techniques will be applied to the creation of children without clinical trials? In other words, we will be approving uncontrolled experimentation—because there will be no controls—on children. In the absence of clinical trials, would that not effectively contravene EU regulations?
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Fiona Claire Bruce (Conservative, Centre-right): That is exactly the point I was about to make. As has been highlighted in a letter from 44 MEPs who have written from the European Parliament this week to the Secretary of State for Health, the EU directives—the European clinical trials directive 2001, which was confirmed by the 2014 directive in the same area—state: "No gene therapy trials may be carried out which result in modifications to the subject’s germ line genetic identity." My hon. Friend the Minister indicated that in some way these particular procedures were excluded from these trials. That cannot be correct. The European clinical trials directive 2001 applies to clinical trials involving germ-line engineering. It applies to all clinical trials using medicine, and to these procedures. For the Department of Health to argue that it can move straight to using these procedures on children without clinical trials gives us, apart from anything else, one reason to vote against these regulations If anyone doubts that, Lord Brennan QC has given a legal opinion on these regulations, which is of central importance. He says: "It is a well-established principle that EU law is to be interpreted…in light of the purpose, values, social and economic goals the provisions aim to achieve. Given that…both the Directive and the 2014 Regulation…ban any gene therapy trials that involve modification of the subject’s germ line identity, then it would clearly fall within their purposes and values to prevent their use in clinical practice of any procedure with that effect without investigation or trials first having taken place." I believe that this Government are at risk of infringement proceedings being brought against them if these proposals go ahead.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Steven John Baker (Conservative, Centre-right): The hon. Gentleman is absolutely right, which is why I began by expressing the humility I feel on this subject as a result of meeting and having had a lengthy conversation with a family who face just that issue. I remind myself, however, that we are dealing here not with a cure for those who have already been born, but with ensuring that those who are subsequently born do not suffer from that disease. If we were discussing a cure for those already living, perhaps the circumstances might be different.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Steven John Baker (Conservative, Centre-right): Prevention certainly is better than cure, but the question is: at what risk? I simply accept that on the earliest stages of human life there is a space for conscience; we will have different beliefs, some of which will be religious, and it is a matter of conscience. There are noble reasons for disagreeing about that stage and about what is and is not legitimate risk taking with human beings The second point I wish to make is that in the course of this conversation there seems to have been what, at best, I could describe as semantic sophistry as to whether or not this process is genetic modification. As always, there is space for debate about the definition of terms, but the germ line is to be modified if these techniques go ahead. The Minister has stated that plainly—
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Steven John Baker (Conservative, Centre-right): She nods, and I am grateful. If the germ line is to be modified, to me this is genetic modification. I heard the hon. Member for Cambridge (Dr Huppert) give a clear explanation of the separate origins, and he understands the science better than I do. But for me the key thing is not so much where these parts of the DNA identity of a person came from, but where they are now. Each one of us has our own particular DNA identity. This procedure changes only a tiny part of it, but, having changed it, we cannot know what the consequences will be. I know that families will be affected by the decision, but I have to say, with great sorrow, that, when it comes to human beings, this degree of uncertainty cannot be borne by my conscience and I shall be voting against the regulations.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Andrew James Bridgen (Conservative, Centre-right): Will the hon. Gentleman bear in mind the fact that mitochondrial DNA only codes the mitochondria, which were undoubtedly alien DNA to the human cells, and actually were probably bacteria that are now symbiotically living within us?
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
David Willetts (Conservative, Centre-right): I apologise to you, Mr Speaker, and to the House for missing the opening speech in the debate. Nevertheless, I was keen to speak because I think that the proposals before us today would tackle a real human need. There are parents who are currently bringing into the world children with a horrible disease and the suffering is made more acute by the fact that now, for the first time, prospective parents know that they could be doing this procedure and they therefore face the dilemma of whether or not to have children I realise that there are important objections. My hon. Friend the Member for Congleton (Fiona Bruce) put forward the ethical objection. I fully understand the fact that our benefit from this treatment does not of itself overcome the ethical issues, which are crucial. The red line to which she referred is, I think, a red line over which we have designer babies and change the DNA that makes the character of a person. I am persuaded by the scientific evidence that the mitochondria is not part of the core DNA that does that. In the previous debates and the previous legislation, it was absolutely clear that the red line that the House was trying to set was one that stopped the changing of human nature, and we do not cross it today.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
David Willetts (Conservative, Centre-right): It is absolutely true that mitochondria can be inherited through the mother, but it does not change the character of the baby Secondly, let me consider the health and safety objection. Sometimes that objection is being used as a cover for what is really an underlying objection in principle. The scientists say, with typical caution and care, that there is no evidence that this is unsafe. It is true that nobody can have 100% certainty about that, but there have been 15 years of research and seven years of scrutiny, including by various scientific bodies and ones promoted under this Government, and so far no one has been able to come up with a concrete and powerful objection that suggests that the process is unsafe. It is right for us today to be considering moving on to the next step.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
David Willetts (Conservative, Centre-right): Let me make some progress, as others want to speak Thirdly, I hear a rejection on the grounds that we are somehow rushing because we are going to be first. People ask, why us? Why now? Why in Britain? I must say, having had the privilege of serving as the Minister responsible for science, that we are first because we have world-leading research in this area. We should be proud of the fact that it is in British labs and British universities that this fundamental research is happening. It was in our country that the structure of DNA was discovered and I had the privilege of going to the Nobel prize ceremony for Robert Edwards, who won the Nobel prize for his work on IVF, which would properly not have passed through the levels of scrutiny we require of research today That brings me to my fourth and final point. What is our role in this Chamber today, faced with this very difficult question? We must make a judgment on whether any ethical issues stand in the way of tackling a clear human need. We are not agreeing that any specific programme of treatment should be licensed or should go ahead. We are very fortunate in this country to have a regulatory structure that is different from that in the US. In the US, if Congress voted for such legislation to go ahead, that would be the end of the matter. If we vote for the regulations today, as I hope that we will, we are saying that the HFEA can decide whether or not to license specific uses of mitochondrial DNA donation after it has assessed all the risks. There is that further safeguard. All we are doing is saying we require it to make that assessment and we are not objecting in principle. My sense of the mood of this House is that there are not many people who object in principle.
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Fiona Claire Bruce (Conservative, Centre-right): I want to pick up on the point the hon. Lady makes about mitochondria not affecting characteristics. The Government’s own consultation document acknowledged that diverse characteristics are associated with mitochondria, including learning disabilities, neurological problems and dementia, and that every person’s symptoms are different. Is there not an insurmountable contradiction in saying that this is just like changing a battery if on the one hand one is saying that the aim is to prevent damage to those characteristics, but on the other hand one is saying that the techniques will not affect them at all?
Human Fertilisation and Embryology — House of Commons, 2015-02-03
Topic: Health
Edward Julian Egerton Leigh (Conservative, Centre-right): Everybody who is following this debate will of course have the most profound sympathy for families who are affected by these appalling diseases, and I quite understand why so many colleagues want to vote for the regulations to lessen human suffering, but I am afraid that I will oppose the regulations. I do so on three grounds: ethics, safety and the importance of parliamentary procedure On the first, ethics, I think what we are considering is a new step. It will affect the germ line. Mitochondria is inherited; it is not just another organ of the body. What is proposed is a fatal and important step. As my hon. Friend the Member for Congleton (Fiona Bruce) asked, where do we stop? Given the nature of the human condition, these appalling diseases, sadly, will occur, but where do we stop? What further modifications will we make My second ground for opposing the regulations is safety. Under European conventions and regulations and so on, we should have full clinical trials and the scientific community should be united on aspects of safety, which it is not. Unfortunately, we will be the first state in the world to authorise the technique, and in that sense, in bioethical terms, we will be in a unique position. We should ask ourselves why no other state—not in the EU, not the US, not yet anybody—thinks that this is proved to be absolutely safe As for the third reason for my opposition, it has been said that this is not a final decision, and that we are just handing it over to the HFEA, but this is the final decision; it is a monumental decision. For the first time, Parliament is saying that we authorise people to affect mitochondrial DNA. That is a monumental decision. This will now happen and colleagues who vote for the regulations must appreciate that. For those three reasons—on ethical grounds, on safety grounds and on procedural grounds—I will vote against the regulations.