Stem Cell Research

My Lords, the noble Lord, Lord Patel, is one of the great men of medicine and I thank him for initiating this very timely debate. I am the chair of the Human Genetics Commission, the Government’s advisory body on developments in human genetics and their implications for healthcare, ethics, law and society. We see ourselves as a model for how public bodies should operate because all the commission’s work is held in public. Our minutes are on our website and our agenda is there, too. We travel the country to have our meetings; we do not just have them in London. We hold evidence gathering sessions. We have public information fora and we make sure that the public can be present when we hold our meetings. We have a consultative panel of more than 100 people, all of whom have, for whatever reason, an interest in this area of genetic developments, usually because they have a genetic trait within their own family. While the Human Genetics Commission does not advise government on stem cell research specifically, many of its stakeholders, including members of the consultative panel I mentioned, have a very strong interest in genetic disease and, therefore, in the therapeutic possibilities offered by stem cell research. Recently, the commission discussed the specific issue of the creation of human/animal hybrid embryos. One of the strongest arguments for this researchis that it would provide a much needed material resource for projects of stem cell research. One of the strongest reasons for carrying out this research is that it promises to provide therapeutic benefits for people suffering serious and life-limiting diseases. The case which those involved in the research make is strong, both intellectually and morally. However, work that the Human Genetics Commission has carried out has revealed that there is a wide range of views about the ethics and prospects of stem cell research. For example, our consultative panel of people personally affected by genetic diseases says that research to find treatments for genetic conditions is important to them—they want this research to take place—but that there should be balance and realism to avoid giving false hope. Our stakeholders, who are in regular contact with us and attend our open meetings and public information gathering sessions, and the people who respond to our consultations give a mixture of very nuanced views. I emphasise that word ““nuance””, because it is very often missing from press reports on stem cell research, which describe it either as monstrous or miraculous, but seldom as anything in between. Some of our stakeholders are concerned about what the enthusiasm for possible cures means for those living with such diseases and our attitudes towards them. Understandably, they feel that the single-minded pursuit of treatments actively devalues those affected by genetic disease and encourages others to treat them as a problem, and sometimes diverts valuable resources from care for those facing such diseases towards possible cures. They would like to see a better balance of how resources are used. Some hold that the eradication of genetic disease amounts to the eradication of a distinct and important genetic group and that it means a form of modern eugenics, but I want to avoid that kind of hyperbole. What is really an issue of concern is that we could be creating a climate whereby the pursuit of perfection is paramount. That coarsens our values, and it dehumanises those who are less than perfect; which means most of us. In my position as chair of the commission, I have always strongly advocated that we really do have to have such discussions taking place in public and that scientists have to make their case in the public realm, explaining that the work that they do will not involve the devaluing of humanity or risk the creation of alarming new forms of life. It means that we should have those debates even if it means revisiting familiar moral arguments. What I urge on this House today is the importance of public debate and the engagement of the public in science policy development. Good policy and progress in science are made in a context of public acceptance, and that public acceptance allows the establishment of good and successful regulatory regimes. Public engagement is essential to achieving that acceptance. From experience, what we have seen is that where science outpaces public acceptance, for example with genetically modified foods, it can lead to the inhibition of research and of the benefits of that research. We remember the good side, on the other hand, of assisted reproduction, where early public engagement on the part of the scientific community and efforts to communicate the benefits in terms that could be grasped on a human scale led to widespread public acceptance and greater confidence for the future. Scientific discovery and biomedical innovation are necessarily the area of specialists, but we have to have good public debate. Our work has revealed that the public—non-specialists—are perfectly capable of understanding complex scientific and moral problems if they are dealt with in a proper way. They have an appetite to engage with those issues, but we need to have transparency and clarity in our communications. The public is suspicious of science that is carried out behind closed doors. I urge the Government to put more money into the work that the Human Genetics Commission does on public engagement. Public confidence is hard won and very easily squandered. To maintain it, it is important that the benefits of stem cell research are communicated honestly and without hyperbole. That is what I urge on the Government today.