Criticisms of the HFEA were submitted by CORE to the Science & Technology Committee's current consultation, and included concerns that the Authority has extended its role beyond its original remit, that it is non-democratic and non-representative, and that it has neither the expertise nor sufficient neutrality to make important ethical decisions associated with new developments in assisted reproduction. Now that the HFEA has also branched out into the even more complex world of stem cell research and human cloning, we believe these concerns need to be addressed urgently.
The establishment of a UK National Bioethics Committee would require considerable research and we do not presume to have the ideal model for such a committee. A preliminary overview of how other countries are moving forward in this area shows the UK to be the odd man out, certainly within the European context.
A brief analysis of the various bioethics provisions existing across Europe reveals that a substantial majority of countries now have standing bioethics committees. The first was set up by Denmark in 1988 and other Scandinavian countries quickly followed their example. All 12 of the bioethics committees we identified (Austria, Belgium, Denmark, France, Germany, Greece, Ireland, Italy, Lithuania, Norway, Sweden, Switzerland) have an advisory role alone, and exist to provide politicians and decision makers with expert opinions on issues relating to bioethics and medical science. Several committees have the additional duty to 'inform the public' as well.
The appointment system varies widely, but in the majority of cases no single government body has total control. Members are selected from a broad range of specialisations, which commonly include biology, medicine, theology, philosophy, ethics, genetics, journalism and, in some cases, politics. The numbers on these committees vary, but most have between 15 and 35 members.
CORE has been attending as an observer some of the current sessions of the International Bioethics Committee (IBC) of Unesco and, without an attempt to analyse how their actual committees are constructed, here are a selection of other countries with national bioethics committees participating at these meetings: Philippines, Canada, Syria, India, Portugal, Indonesia, Israel, Turkey, and many more. As the scope of the current sessions of the IBC of Unesco is to produce a 'Declaration on Universal Norms on Bioethics' it seems particularly appropriate to have representation from committees with a genuine national identity, in order to represent in a fair and democratic way the significant human interests involved.
The Bioethics Committee of the President of the USA, set up to provide a forum for a national discussion of bioethical issues, differs considerably in its appointment system from the European models, insofar as it is actually chosen directly by the President himself. The scope of the committee, however, is still restricted to a purely consultative role. In its mission statement (at point d) it is established that 'The Council shall not be responsible for the review and approval of specific projects or for decision and overseeing regulations for specific government agencies.' This council is primarily a think tank.
As promised, this is no more than the briefest of overviews, but I think it would be fair to say that there is growing interest in creating a national bioethics committee within the United Kingdom, or at least in England and Wales. I suggest that many Parliamentarians would be sympathetic and that they too are expressing serious concern that their democratic role has been usurped by the HFEA. Endless battles through the Courts to establish ethical limits are neither desirable or practical (or economical for the vulnerable plaintiffs). I am not sure that a UK ethics committee should restrict its activities just to the world of reproduction, but whatever the plans, CORE would be delighted to see steps taken in this general direction, and suggests that there are more than enough existing models to look to for inspiration.
We recommend a visit to the USA Committee's website where you can also find a transcript of their meeting with the current chair of the HFEA, Ms Suzi Leather.
If you really want to do extensive research on this subject try the Unesco link.