Reproducing regulation: new laws for fertility treatment and embryo research - will we get it right?
In view of this, it was most appropriate that the first speaker was Liberal Democrat MP, Phil Willis, who chairs the House of Commons Science and Technology Committee. He chaired a joint scrutiny committee of both houses that recommended significant changes to the Government's draft 'Human Tissue and Embryos Bill' in the summer. He told the conference of his pleasant surprise that the Government had accepted the recommendation not to merge the Human Fertilisation and Embryology Authority (HFEA) with the Human Tissue Authority to create a new Regulatory Authority for Tissue and Embryos (RATE) and to keep the two elements legislatively separate. The scrutiny committee had argued that RATE would lack the expertise to regulate fertility and embryo research activities, particularly if more regulatory powers were to be devolved to the regulatory authority, as they had hoped would be the case. It also seems that the Government has accepted the use of animal-human hybrids embryos in research within the 14 day limit under licence from the HFEA. Mr Willis concluded by saying that the ethical issues were always the most taxing and that he favoured the establishment of a standing Parliamentary Bioethics Committee to help their deliberations.
Next, James Lawford-Davies, a senior associate at law firm Clifford Chance and lecturer at Newcastle University, reminded the audience that differences in the laws and regulations between countries meant that many people who could not get what they want in terms of assisted conception in one country would travel to another to buy it. He presented evidence of such 'reproductive tourism' (a phrase he felt trivialised the needs of such couples) from a survey conducted jointly by the Institute of Prospective Technological Studies (one of eight research institutes of the European Commission), the European Society for Human Reproduction and Embryology and the European Society of Human Genetics. Following on in international mode, Maureen McTeer, adjunct professor of medical law at the University of Ottawa, mentioned reproductive tourism between the USA and Canada, but concentrated on the slow but steady development of fertility treatment and embryo research regulation in Canada. This, she said, owed a lot to the pioneering work in the UK.
After lunch, Dr Tom Shakespeare, research fellow at the Institute for Policy and Practice at Newcastle University, tackled issues relating to embryo selection following PGD (preimplantation genetic diagnosis talking to the title 'Means, Ends, Commodities or Gifts: the Ethics of Choosing Children'. Liberal in his approach, he drew back from advocating that parents alone should decide on the use of PGD. He favoured devolving regulation of PGD to the regulatory authority in a way that took account of the views of the parents and the clinicians caring for them.
In the same way that research into PGD provided a backdrop for the passage of the original HFE Act through Parliament, human embryonic stem cell (ES cell) research provides the backdrop to the new legislation. Dr Stephen Minger, Director of King's Stem Cell Biology Laboratory at Kings College London introduced the science behind therapeutic and research applications of human stem cells, embryonic and otherwise. He explained that it was the expected very low success rate of being able to grow human ES cells after therapeutic cloning - placing a nucleus from a somatic cell from a specific person (such as the patient) into an enucleated egg - that was behind his recent application to the HFEA to use bovine rather than human eggs for his research. He expects to use thousands of bovine (enucleated) eggs during research to learn how better to create human ES cells in a way that would be useful for the treatment of conditions like Parkinson's disease in the future.
After tea, John Parsons, consultant obstetrician, gynaecologist and director of the Assisted Conception Unit at Kings College Hospital, tackled a problem area with current legislation that has been rather overlooked in the debates so far, namely widespread and often irrational confidentiality restrictions. Based on his own clinic survey, he concluded that only with gamete donation is it perhaps appropriate for the patient to be asked to agree to her GP being informed of the procedure. In other areas of assisted reproduction, he argued that confidentiality should be as for all other medical procedures - it would make for better clinical practice.
Finally, Professor Eric Blyth discussed the politics of donor conception and birth registration, starting with a review on how attitudes to gamete donation and legislation have changed since the late 1940s when the then Archbishop of Canterbury called for donor insemination to be made a criminal offence. Whilst there seems to be increasing acceptance that children should be told about the nature of their conception, it was not clear what the best way was of achieving this. It is not just a debate of what goes on the birth certificate, but how all the various birth and related registers are handled for the benefit of the children born of donor conception.
The day's proceedings were admirably chaired by Baroness Ruth Deech, former chair of the HFEA and Professor Alison Murdoch, head of reproductive medicine at Newcastle University. In the Progress Educational Trust tradition, there was ample time for audience participation in the discussion. The Progress Educational Trust was grateful for a Galton Institute conference grant and some sponsorship from Clifford Chance to help with the costs of putting on the conference.