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Regulating egg donation for research: putting the cart before the horse?

22 February 2007
By Dr Alexandra Plows
Specialises in mapping and analysing public engagement. She is a Research Associate at Cesagen and worked on the 'Emerging Politics of Human Genetic Technologies' project
Appeared in BioNews 392
The UK's Human Fertilisation and Embryology Authority (HFEA) recently decided to extend its licence to the North East England Stem Cell Institute (NESCI), allowing NESCI to ask women not already undergoing IVF to donate their eggs 'altruistically' for CNT (cell nuclear transfer) or therapeutic cloning research. It made this decision ahead of analysing the input into its recently-closed public consultation on the very same topic. Indeed, the HFEA announced the public consultation in July 2006, after it had granted a temporary licence to NESCI to recruit women for egg donation via IVF 'egg- sharing'. Thus even before the extended decision on the 21 December, there was a general view that the HFEA had put the cart before the horse, in granting the initial licence to NESCI before initiating a consultation process. It is hardly surprising that we are now seeing serious engaged debate on these matters of process. Many are now asking highly critical questions about democratic decision-making within the HFEA, and the use and possible abuse of public engagement practices.

The HFEA's public consultation, 'Donating eggs for research: safeguarding donors' (1) galvanised debate within certain settings. This has been an important 'trigger moment', catalysing a range of concerns from a variety of sources into very public critiques. For example, a public 'question time' style debate in Edinburgh (2) explored whether women's health should be compromised in the pursuit of scientific research (3) while a one-day seminar in Cardiff, organised by CESAGen (4) resulted in a key statement of concerns about the very process of the HFEA consultation, as well as its content (5).

Such concerns seem even more prescient given the subsequent developments. A 'flabbergasted' Dr Stephen Minger, himself a stem cell scientist, asked: 'what is the point in having a public consultation?' (6)(7). The question has been asked before in many contexts. Those cynical of public engagement processes tend to state that they are merely 'tick in the box' exercises for an already- set agenda. The HFEA's actions have exacerbated such cynicism, contributing to a feeling amongst those publics who do at least consider engaging that it is simply a waste of their time to do so. This is also the case not just for the apocryphal 'woman on the street', but also for the network of stakeholders across a broad spectrum who respond positively to various policy calls on their expertise and knowledge. The HFEA's actions thus have implications not just for how this specific consultation's conclusions will be received, but for how future consultations will be seen and responded to (8).

Indeed, the consultation document itself was in places extremely confusing, for example blurring proposed sources and uses of eggs and embryos, and thus detrimental to the very process of developing public understanding of what is actually at stake. If policy makers wish to engage 'the general public', and specifically in this complex case, there ought to have been much clearer, accessible, much more 'user friendly' public information so that people (especially women) could make informed contributions to this call for public engagement.

Dr Minger's comments are significant in addition. There is a familiar process at work here, a 'legitimisation of dissent', whereby those opposed to, or critical of, a technology are often cast as 'anti science' or 'anti progress' until a scientific expert engaged with the technology publicly voices criticisms. Only then are other critical perspectives and concerns able to be heard properly on their own terms in the public domain.

This public engagement debacle should lead to a radical improvement in the dynamic between publics (including academics and scientists) and policy makers (9). Better use should also be made of existing and future social science research in terms of improving public engagement mechanisms and debating stakes. The many, complex issues raised by the various sourcing routes of eggs for CNT and their proposed uses, must now be debated as broadly, rigorously, and sensitively as possible. This can only be beneficial, not least for the conducting of 'sound science', but also the mature discussion of different perspectives, and of the broader issues (for example, the increasingly problematised concept of 'informed choice') which consistently surface when successive 'single issues' impact as controversies in the public sphere.

1) Donating eggs for research: safeguarding donors
|  18 July 2019
2) Genomics Network
|  18 July 2019
3) Should women donate eggs for research - Event summary (The University of Edinburgh)
|  18 July 2019
4) CESAGen, EGENIS and INNOGEN are three research centres funded by the Economic and Social Research Council (ESRC) that, along with the ESRC Genomics Policy and Research Forum, make up the ESRC Genomics Network
|  18 July 2019
5) Should scientific researchers be allowed to ask women to provide their eggs for disease research? A statement of concerns in response to the current HFEA public consultation: Donating eggs for research: safeguarding donors
|  18 July 2019
6) Anger over egg donation licence (He also emphasised the health risks to women.)
BBC News |  21 December 2006
7) Health effects of egg donation may take decades to emerge (The piece discussed the issue of uncertainty in relation to risk,informed consent and 'altruistic' donation in particular )
Nature |  9 August 2006
8) Third Report of the House of Lords Select Committee on Science and Technology (It is noteworthy that this report strongly criticised existing public engagement practises)
|  23 February 2000
9) Government White Paper
|  18 July 2019
7 January 2007 - by Heidi Nicholl 
The UK's Human Fertilisation and Embryology Authority (HFEA) has, for the first time, amended a licence for stem cell research to be carried out, which allows women to donate eggs without needing the donation to be linked to ongoing in vitro fertilisation (IVF) or sterilisation procedures. The...
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