15 Morningside Road, Edinburgh EH10 4DP, Tel: 0131 447 6394 or 0774 298 4459
15 March 2005
Organisers: Human fertilisation and Embryology Authority (HFEA)
Venue: Royal College of Surgeons, London
Participants: Around 500 persons were present
SCHB participants: Dr. Neville Cobbe
The HFEA Annual Conference opened with a "Horizon scanning" presentation by Prof. Alan Trounson (Monash Immunology and Stem Cell Laboratories), in which selected coverage of interesting scientific achievements over the last few years was seamlessly blended with personal aspirations and some measure of misinformation.
On the positive side, Prof. Trounson described how a shift in practice towards single embryo transfer might lead to reduced multiple births (though the stress on selection of developmentally competent embryos rather than simply improving culture conditions may raise some eugenic concerns) and how the increased use of robotics in ART might reduce both human error and associated costs.
In discussing PGD, Prof. Trounson expressed the view that such biopsies had no known harmful effects on embryo development and further suggested that the "hatching" of blastocysts from the zona pelucida was a beneficial intervention, despite his previously published comments suggesting harmful effects based on the questionable impact of PGD on pregnancy rates.
The use of microarray technology in detecting chromosomal rearrangements was discussed, together with the expansion of PGD to permit selection against embryos at increased risk of breast cancer, other cancers with a strong hereditary component, neurofibromatosis, diabetes and various polygenic disorders.
With regard to the "saviour sibling" scenario in which embryos might be selected as compatible tissue donors for others, Prof. Trounson dismissed issues of consent by arguing that a sibling saving another would presumably never disagree anyway (but failed to extend his reasoning by therefore arguing for compulsory nationwide bone-marrow donation).
Prof. Trounson's presentation then progressed to a discussion of embryonic stem cells and their developmental potential, with particular attention focused on "therapeutic" cloning. Here much of the discussion departed from orthodox science and displayed more blind hope (both in the absence of supporting evidence and contrary to the majority of available data), as cloning was used to advocate cures for conditions such as Alzheimer's disease and other "diseases of undetermined cause".
Prof. Trounson also asserted that he was unaware of problems associated with cloned embryonic stem cells but when subsequently challenged about the gene expression defects observed in cloned mouse embryonic stem cells in particular, he simply stated that he remained "optimistic".
This blind "optimism" was also evident in his discussion of germ cell production from stem cells, which failed to draw attention to cell cycle abnormalities in stem cell derived oocytes and the lack of data demonstrating that such sperm or eggs derived from mouse embryonic stem cells might yield healthy or viable mice.
Prof. Trounson's presentation was followed by a "response" from Steve Connor, science editor for the Independent. This was supposedly meant to reflect on the social and broader implications of the science presented earlier but instead largely focused on the challenges faced by a science correspondent given the potential breadth of science coverage and the obsession with superlatives by newspaper editors.
Concerning the implications of advances in biology, Mr. Connor quoted Jim Watson in asking "if scientists don't play God, then who will?" and drew on Baroness Warnock's comments to support the narrow view that there would be no ethical objections to reproductive cloning aside from current safety concerns.
The morning presentation continued with projections about the future of assisted reproduction by Prof. David Barlow (University of Glasgow) in light of the 2004 NICE guidelines, stressing that infertility services remained unlikely to become a high priority for the NHS.
This was followed a discussion of the NICE guidelines implications for the private sector by Dr. Simon Fischel (Managing Director of the CARE Fertility Group), in which reference was made to a "postcode lottery" resulting from inconsistent regional enforcement of guidelines and attention was focused on the business needs of the fertility sector in order to provide an adequate service by making enough money.
The HFEA Chief Executive, Angela McNab, was evidently at pains to stress the increased openness of the HFEA during her presentation, as well as being anxious to demonstrate some awareness of the implications of the EU tissue directive. She repudiated claims that the HFEA is no longer needed as a regulator now that IVF is considered standard, pointing to the continued need for regulation where new technologies are concerned and insisting that determining policy was the HFEA's strength. She also advocated closer scrutiny for low-performing or high-risk clinics but not necessarily all clinics in general, insisting that the inspectorate needs to be a professional body.
However, Ms. McNab also argued that policy and regulation should be kept separate, even though the BMA appear to consider these two activities to be inextricably linked.
By contrast, Dr. David Morroll (Chair of the Association of Clinical Embryologists) suggested that the EU directive provides a separate accreditation process that renders the HFEA Code of Practice irrelevant in its current form and the strength of the HFEA might remain in its wider perspective on reproductive science by inclusion of lay members reflecting the views of all sections of society.
This was followed by a skilful presentation by Dr. Ian Gibson MP, chair of the House of Commons Science and Technology Select Committee, in which he eloquently said as little as possible about the Committee's conclusions. Nevertheless, he admitted his own personal view that abortion needs re-examination as a separate issue, though the current report by the Committee was already a massive document in its own right, and that abortion would probably become a focus of debate in Parliament after the next General Election.
During lunchtime, there was an opportunity to meet with members of the HFEA and I was eventually able to talk in person with Suzi Leather, the HFEA chair. She asked if I had received a reply to my own correspondence regarding cloning licenses from Dr Chris O'Toole, though I still have not received this yet. She then proceeded to ask me how feasible I thought reproductive cloning might be.
In the afternoon, the HFEA Deputy Chief Executive and Director of Regulation, Trish Davies, discussed moves towards risk-based regulation following the Toft Report, describing how laboratory operators were the source of the overwhelming majority of errors reported as "Category A incidents" whilst most complaints related to incidents in the consulting room and therefore differed little from other health services.
The need for greater lab safety was then addressed by Dr. Stephen Troup (Liverpool Women's Hospital) in his presentation advocating the use of bar-coding and radio-tags to identify patient samples with encoded information and avoid mismatches, as in the blood transfusion service.
Safety concerns associated with low frequency irradiation of gametes or embryos were also discussed but these risks were considered minimal on the basis of currently available data and allowing for the fact that the associated radio-wave irradiation would not be constant and well below levels associated with mobile phones.
The penultimate session was focused on the welfare offspring created through assisted reproduction and gamete donation. After a short HFEA-produced film depicting the experiences of parents telling their children that they were really donor-conceived, Prof. Susan Golombok (City University, London) summarised the results of research spanning decades, suggesting that the social, emotional and cognitive development of children were not adversely affected by IVF, surrogacy, gamete donation or lesbian parenting.
Nevertheless, it was also apparent that the overwhelming bulk of this data was still primarily based on subjective assessments of children up to the age of five, despite the possibility for longitudinal studies of greater duration. It was also admitted that less than 10% of heterosexual parents had told their children that they were conceived with donated gametes and that long-term consequences of secrecy concerning donor-conception or surrogacy were not known. It was also stressed that fathers were still needed for the psychological well-being of children but it could not be said that a bad father was still better that no father at all.
Concerning donor assisted conception, criticisms were raised that Prof. Golombok's comparisons with adoption were flawed as these were based on current comparisons with instability in early life of children in care rather than controlled comparisons with adoption at a time when it was treated with similar secrecy to gamete donation now.
The session was concluded by Prof. Eric Blyth (University of Huddersfield) who also reviewed young people's experiences of early disclosure of donor conception. It was stressed that the small number of such studies could only provide tentative conclusions and "success stories" might be over-represented. Most young people were interested in learning more about their donor, despite the lack of evidence of problematic relationships at home. This ranged from all manner of questions about donors, such as whether or not they have nightmares, to interest in making contact with donors and other children conceived by the same donor.
The final session attempted to address what information might be required by patients in order to make informed choices. Oliver Fry outlined the need for one central portal for impartial information, modelled on the "Which?" consumer organisation.
The problem of deciding whom to trust was also described by Kate Brian in her presentation entitled "The Empowered Patient" and described how patients often felt forced to get on the bandwagon and use technology such as IVF regardless of whether or not they actually need it.
The theme of "The Empowered Patient" was continued in the final presentation by Clare Brown of Infertility Network UK, which described patients who felt clinics were too busy to answer their questions or placed pressure on partners.
The need for readily accessible unbiased and up-to-date factual information about treatment and outcomes for conditions was also stressed (preferably in an easily digestible written form), together with sensitivity to patients' changing needs. The potential for misleading information from many competing internet sources and exaggerated claims generated by the media were outlined as particular concerns.
The Conference concluded with Suzi Leather reiterating this appeal for sanity in the media, particularly in light on Steve Connor's earlier description of the media's obsession with superlatives.