HFEA in ‘sensible decision’ shock!

The UK’s Human Fertilisation and Embryology Authority (HFEA) announced yesterday that women will in future be allowed to donate eggs for genetic research ‘altruistically’. What took it so long?

In its statement, the HFEA says: ‘Having considered all the information on donating eggs for research, including the risks to women and the outcomes of the public consultation, the Authority has decided that women will be allowed to donate their eggs to research, both as an altruistic donor or in conjunction with their own IVF treatment. Given that the medical risks for donating for research are no higher than for treatment, we have concluded that it is not for us to remove a woman’s choice of how her donated eggs should be used.’ (1)

This is a sensible decision – one of very few that the HFEA has made recently. While there is a small risk to women from donating eggs, and the process is far from pain-free, the decision of whether or not to donate should be left in the hands of individuals with the proviso that proper advice be made available to them. Prior to yesterday’s announcement, only women undergoing fertility treatment could donate eggs; now all women will have the choice to donate. If anything, greater consideration should have been made to paying women a commercial rate to donate eggs, rather than the ‘expenses’ that will be on offer to them. As it stands, the supply of donated eggs is likely to be greater from women who get a discount on IVF treatment as a result than it is from individuals spontaneously coming forward to donate for the common good.

In taking this decision, the HFEA seems to be motivated by a desire to preserve genetic and stem-cell research in Britain, and to prevent it from falling behind in comparison to other states where breakthroughs are being made. Yet the HFEA itself has done a great deal to cast suspicion on such research and to stand as a bureaucratic barrier to scientific investigation. The HFEA has on many occasions made it abundantly clear that it is the job of its officials to decide how eggs should be used, how and when new treatments should be applied, and who should get to apply them. Indeed, the only problem that the HFEA has resolved with its new statement was one of its own making. Why was there a ban on women charitably donating eggs in the first place?

The Authority seems to approach each new development with a view that individuals and society are incapable of making sensible judgements, and that HFEA officials must step in to manage the process – or block altogether anything deemed too risky.

For example, in August 2002, the HFEA refused Michelle and Jayson Whitaker the right to use tissue typing to find a genetic match for their son Charlie who suffered from a rare blood disorder. If Michelle Whitaker could give birth to a child closely matched to Charlie, there was a good chance that stem cells could be produced from the new baby that would cure Charlie’s condition. The HFEA’s refusal to give the go-ahead came despite the fact that it allowed such treatment in the apparently similar case of Raj and Shahana Hashmi. The Whitakers went to America for the treatment instead, which appears to have been successful. Subsequently, the HFEA decided to change the rules to allow cases like that of the Whitakers’ (see Life and death decisions, by Josie Appleton).

Similarly, the Authority has tied itself in knots over how many embryos should be transferred to a woman at any one time. In the early days of IVF, with success rates very low, many eggs were transferred to increase the chance of pregnancy, but this also increased the risk of multiple pregnancies. The Authority decided to limit implantation to two eggs except in older women. The HFEA has left no room for clinical judgement in the matter.

This state of affairs was challenged, unsuccessfully, by Mohammed Taranissi, who was also the Whitakers’ doctor. His personal success, and his constant challenges to the limits the Authority has placed on the development of new techniques and applications, seems to have led to something of a vendetta against him. This came to a head in the ludicrous BBC Panorama programme in January this year, in which Taranissi was accused of ripping off parents and using dubious medical practices, with the HFEA arranging for an ‘inspection’ cum police raid on his premises to coincide with the TV programme (see Behind the IVF ‘trial by television’ by Tony Gilland).

In 2003, the HFEA recommended a ban on sex selection, stating that ‘the most persuasive arguments for access to sex selection technologies are related to the welfare of the children and families concerned’. In other words, it would be better for the HFEA to make a blanket judgement about what is in the best interests of children than to leave such decisions to parents (see Policing parents-to-be by Frank Furedi).

No wonder the House of Commons Science and Technology Committee suggested in a report in 2005 that ‘the current regulatory model, which provides the HFEA with a large amount of policymaking flexibility, should be replaced with a system which devolves clinical decision-making and technical standards down to patients and professionals while at the same time strengthening parliamentary and ethical oversight’ (see Regulating reproductive technology – less is more by Jennie Bristow).

It would be far better if regulation was much more limited. We need a hands-off approach so that clinicians and patients are allowed the freedom to apply technologies as they see fit. Experience, and common sense, suggests that society is not packed with Mengele-like figures who will abuse others for the sake of science. Rather, new needs and applications are arising all the time, and doctors and patients should be allowed to make the best use of them. As things stand, the assumption seems to be that something should be outlawed unless specifically allowed. That assumption should be reversed.

In turn, parliament can reassess the law in this area when necessary. If there is real doubt – as opposed to bureaucratic caution – about a new application or method, then the law can be changed. At least that would mean a proper debate among elected representatives rather than a decision made for all the wrong reasons by appointees.

The HFEA has made a good decision that will help to free up research in Britain – yet the rest of the time it does a great deal to undermine or restrict such research and the application of new technologies. Perhaps the best thing the government could do to promote the welfare of parents and children, and to allow the speedy development of fertility treatment and stem-cell research, would be to scrap the HFEA altogether.

(1) Statement on Donating Eggs for research, HFEA, 21 February 2007