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Real Progress - but more to do

7 April 2008
By Professor Martin H Johnson
Professor of Reproductive Sciences, PND Department, University of Cambridge
Appeared in BioNews 452
Progress (now the Progress Educational Trust) was formed in 1985. Its 10th anniversary was marked at a meeting at the Royal Society of Medicine, when I was kindly invited to give a lecture (1) entitled 'Looking Forward, Looking Back'. Between 1985 and 1995, I personally had moved from being an active researcher on human embryos and a political campaigner in favour of research to being a member of the Human Fertilisation and Embryology Authority (HFEA) - poacher turned game-keeper some suggested! Another 12-13 years on and I became special adviser to the Joint Lords and Commons Committee scrutinising the then draft Human Tissue and Embryos Bill, and publishing papers critical of many aspects of the current regulatory regime in the UK (2,3). Poacher again? So, here, in an updated reprise of the 1995 lecture, I draw on the experiences of this personal journey to try and pick out what for me are two key issues for the future role of Progress and BioNews in ART regulation in the UK.

The current Parliamentary shenanigans are indeed reminiscent of those surrounding the 1990 Human Fertilisation and Embryology (HFE) Act and the 1985 Unborn Child (Protection) Bill (a private member's Bill proposed by Enoch Powell). There is, however, one major difference. In the 1985 Commons' vote there was a massive defeat for any sort of embryo research, and the Bill failed because it was talked-out by our filibustering. In 1990, the issue of embryo research was in doubt until the last moment. In contrast, now the question of whether research on human embryos should be allowed is no longer at issue. The types of allowable research may be, but not the principle. There has been a massive sea-change in public opinion. Indeed, I suspect that both the Department of Health and the Joint Committee were surprised at the absence of widespread media and public reaction against the proposals for human: animal mixed embryos in the current draft Bill - the public, not for the first time, being ahead of the politicians, Much of the credit for this shift in public awareness and opinion lies with Progress.

Progress was born as an ill-conceived and illegitimate child of Enoch Powell, but despite such inauspicious beginnings has flourished and indeed owes a great debt of gratitude to its erring father - pace the Need for a Father! In the emergency confronting us on the publication of the Powell Bill and the overwhelming Commons' support for it, an alliance of MPs, doctors, women's and family groups, charities, scientists and lawyers formed to fight and filibuster. In the process of working together, we came to know and respect one another, and Progress was born. That coalition was hardy, thrived and lives today. Just how crucial that coalition was in driving public education is clear when you look at the messes surrounding GM foods, the MMR vaccine and the Human Tissue Act, Each of these medico-scientific issues arose through emergencies, and for none of them did an equivalent alliance form. In the consequential disarray, no effective science-based rebuttal was presented to the public. The consequences have been damage to the nation's health and agriculture and disproportionately burdensome legislation regulating the use of human tissues.

Does this successful history of effective public education mean that Progress is no longer needed? Of course not! Just witness the last few weeks or so when the media were again awash with doctors and scientists countering misleading criticisms of the HFE Bill 2008. Witness also the report from the Joint Committee that caused the Department of Health to radically restructure its Bill. Witness that same Progress alliance tracking and snapping at the heels of the Secretary of State behind the scenes until the current Bill was amended into better shape. The spirit and style that marked the founding activities of Progress were alive and evident throughout, and what has been happening recently illustrates eloquently the requirement for continuing and continuous public education as science moves on and new generations need to be educated. So, carry on teaching.

The second key issue that I identify as offering a major role for Progress in the immediate future concerns the style, load and extent of regulatory practice provided for within the new HFE Act. It is significant that, in the recent debates, once again it is embryo research and the translation of that novel research to therapeutic use that has been most publicly controversial. In contrast, for most of the public therapeutic IVF itself is routine and unremarkable. The HFEA has chosen in recent years to portray itself as a 'champion of the patient' and the guarantor of patient safety. Laudable though these aims are, it is not at all clear that such a role was intended in the 1990 Act, neither is it clear that the HFEA is best placed to undertake these roles. The HFEA Code of Practice has become increasingly unwieldy and intrudes with more and more detail into areas of professional practice. This intrusion comes at a time when the general surveillance of medical practice has also risen, leading, in my view, to a massive (and costly) overregulation of ART use therapeutically (see Reference 3). The burden of clinical regulation is no longer cost-effective. However, the 2009 Act has within it provision for contracting out certain of the HFEA activities. I would like to suggest that Progress actively explores what form this contracting out might most effectively take and how it might best be achieved in the interests of both patients and the profession. For example, is there a case for much of what is contained currently within the Code of Practice relating to practice issues to be contracted out to the Royal College of Obstetrics and Gynaecology to police, review and revise? Would that pose a risk to patient interests? Or could a form of contract be devised which actually benefitted both patient and profession by load reduction on both? The Progress Educational Trust, as an informed coalition of different interests, is well placed to generate active discussion of these questions and thereby to assist the new Authority by providing an informed platform for open discussion. It will be important to help the new Authority to resist the creeping extension of its regulatory reach that has been evident in recent years.

Much to be done and much to be proud of at the Progress Educational Trust.  Enoch Powell should be proud to claim paternity!

SOURCES & REFERENCES
1) M.H. Johnson (1995) Looking Forward, Looking Back: the 10th Anniversary Progress Lecture. Progress Bulletin 24, 2-4
|  4 June 2020
2) M.H. Johnson (2006) Escaping the tyranny of the embryo? A new approach to ART regulation based on UK and Australian experiences. Human Reproduction 21, 2756-2765.
|  4 June 2020
3) M.H. Johnson and K, Petersen (2008) Public Interest or Public Meddling? Towards an objective framework for the regulation of Assisted Reproductive Technologies. Human Reproduction 2008; doi: 10.1093/humrep/dem387.
|  4 June 2020
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