Public Bodies Bill [HL]

Lord Walton of Detchant Excerpts

Monday 9th May 2011 Lords Chamber

I should have said that I declare an interest, in that I was chairman of the HFEA years ago, and my heart is engaged in this topic for the sake of the patients and because of the whole enormously enriching field that was opened up to me and to many others. I urge your Lordships to do the right thing—to call for a review before committing this pointless transfer, which will save no money and damage British interests. I beg to move.

[Lord Walton of Detchant]

My Lords, I added my name to the first two of these amendments for a variety of reasons. Four or five years ago in a debate on the National Health Service in your Lordships’ House, I remarked that I had identified more than 40 organisations that had the right to inspect, assess and consider health service activities, and I defined those organisations as constituting an intolerable “quangocracy”. I believed that I was the first to create that neologism but since then others have claimed authorship. However, when I heard of the Government’s intention to embark upon a bonfire of the quangos, the two quangos that I would never have contemplated being the first to go on the bonfire were the Human Fertilisation and Embryology Authority and the Human Tissue Authority. In my opinion, each of them has fulfilled and continues to fulfil a vital function—vital for suffering humanity and vital for the pursuit of medical research—and I believe that the Government’s current proposals are likely to be damaging to both bodies and their functions.

Why do I say that? Perhaps I may go back. The Human Fertilisation and Embryology Authority was established by the Human Fertilisation and Embryology Bill based on a splendid report prepared under the chairmanship of my noble friend Lady Warnock. From the moment the authority was established, it required that any individuals wishing to work with human embryos up to 14 days after fertilisation would have to have a licence from the authority. In the first instance, that licence helped greatly to improve the treatment of infertility.

However, as time went by, the Act was amended and we went on to develop the pre-implantation diagnosis of genetic disease, allowing individuals carrying harmful genes which would produce in their offspring very harmful diseases to be studied so as to prevent diseases such as cystic fibrosis and Duchenne muscular dystrophy. Later still, amendments to the Act led to many other crucial developments. Further regulations made it possible to use spare embryonic material in in vitro fertilisation programmes to generate stem cells for the treatment of human disease, and that is slowly but surely becoming a reality. As my noble friend Lady Deech said, only recently the HFEA established an expert committee to examine the results of some highly fundamental world-leading research, carried out in my former university of Newcastle upon Tyne, using the technique of pro-nuclear transfer for the prevention of mitochondrial disease. I as a neurologist have seen and tried to help and treat patients with devastating mitochondrial diseases. This is a massive development which is likely to be of enormous value to humanity.

I agree that it is possible to consider the transfer of these research functions to other organisations but let me make one or two important points relating to that proposal. The Care Quality Commission has recently merged the Healthcare Commission, the Mental Health Commission and the social care commission. It has taken on a massive regulatory task. I cannot conceive of any mechanism by which that organisation, constituted as it is, could possibly fulfil the functions of the HFEA without creating within itself expert committees with the right kind of background and expertise to be able to assess the importance of the functions that it will be absorbing from the HFEA. If that is the case, why abolish the HFEA or merge it into a body that is certainly not constituted to carry out those particular functions?

Let me turn for a moment to the Human Tissue Authority. The Alder Hey scandal was a failing on the part of members of my profession. Everyone in the profession knows that when a post-mortem is carried out inspections of the organs that one sees at that examination cannot, except in most unusual circumstances, give you the full diagnostic picture or the information necessary to prove the cause of death, or give evidence that is likely to help in future research. To obtain that information it is necessary to remove the organs and to fix them in formalin. After they have been fixed you then take sections that are examined under the microscope which give you diagnostic information. Regrettably many pathologists took the view that when permission for a post-mortem was given, that gave them authority to retain the organs and they did not regularly seek permission to retain them. Now, of course, the Human Tissue Act makes it absolutely clear that the retention of organs after a post-mortem for examination and diagnostic purposes absolutely requires the permission of the next of kin of the individual who is undergoing a post-mortem examination.

Quite apart from that the HTA has major responsibilities on issues such as the transplantation of human organs. There are many sensitive issues, such as whether someone donating an organ should be in any way compensated, whether it is appropriate that it should come from blood relations or whether well-meaning individuals not related to the individual should be allowed to give an organ for transplant. These and many other issues fall to the remit of the HTA. I recall very well when we considered the Human Tissue Act in your Lordships’ House and in Grand Committee—it took hours and hours of consultation. The Bill as it came to us from the Commons contained several major defects. Those major defects would have hamstrung diagnostic purposes and been immensely damaging to the future of medical research—not least the constraints on the use of archive material which had been removed from patients years before and which were vital for research purposes.

Happily we were able to introduce some major amendments in your Lordships’ House to improve the Human Tissue Act and to establish the Human Tissue Authority. I remember very well, as I am sure will the noble Lord, Lord Jenkin, that several people in the research community and in the royal colleges said, “Thank God for the House of Lords”. That Act was improved and the Human Tissue Authority was given the appropriate regulations to enable it to fulfil its function.

If the process that the Government intend goes ahead, and if these bodies are merged with the Care Quality Commission, who will be responsible for licensing? Will they carry out inspections and have the authority, under the Human Fertilisation and Embryology Act, to withdraw recognition from people who are not fulfilling the terms of their licence?