Perhaps the Government is right to plan to abolish the Human Fertilisation and Embryology Authority (HFEA). The astonishing behaviour of its members at last week's open Authority meeting over compensation for egg and sperm donors will lower its reputation in the eyes of some of its erstwhile supporters. Those who might have manned the barricades to halt the Government's plans may now wonder whether the Care Quality Commission (CQC) — the health and social care regulator set to take over the HFEA's functions - might do a better job.
Once upon a time Britain could be proud of its specialist fertility regulator. Set up well ahead of those of most other countries, it alone has a national register of treatments, outcomes, donors and donor conceived individuals. Not greatly loved by all those that it regulated, it gradually won respect from the public, from patients and the media, and was admired abroad. It tackled bravely some of the controversial ethical issues that it faced — sex selection, saviour siblings, the genetic conditions to prevent which PGD might be used, embryonic stem cell research, the ending of donor anonymity, and reducing multiple births. Of course some of the well known practitioners never liked the HFEA — Professor Lord Robert Winston, Professor Ian Craft, and Mr Mohamed Taranissi (against whom the HFEA fought and lost an ill-advised battle), and were always ready to lobby against it. This lack of evident support has suited the Government's 'quango cull' agenda.
Whatever one may think about the actual decisions on donor payment reached by the HFEA - to permit compensation for 'inconvenience' of up to £750 for egg donors per cycle and £35 per visit for sperm donors — the process and the reasoning by which they were arrived at was so flawed as to disturb confidence in the organisation. Even those who may have hoped for decisions of this kind will have been startled. If like many others, you think that this outcome will degrade the process of donation, those involved in it, or potentially resulting from it, you will have been shocked.
Perhaps we were naive. For all the protestations to the contrary, there was always a not too subtle agenda that the whole exercise was about addressing a shortage and rationalising a route to hefty incentive payments to correct it. There is a perfectly respectable argument that it is better to tolerate a dent in ethical standards to reduce the risks to UK women of travelling to countries where donation and treatment is less well regulated. But they sought to pretend that this was not about incentives or reducing a shortage.
Step 1 was to make the plausible but unevidenced assertion that collecting evidence of out of pocket expenses was administratively difficult. Step 2 was therefore to think of consolidating expenses into a single payment that could be classed as general inconvenience including costs, time and (big leap here)'valuing the donor's contribution'. Step 3 — the greatest jump of all - was to look around Europe for the highest levels offered in lumps sum schemes in other states, picking Denmark for sperm and Spain for eggs, and to match them. Why go for the highest? A real giveaway emerged when it was shown that Denmark pays £60 to egg donors. The disingenuous nature of the exercise was revealed.
The HFEA says it now wants to take the lead in raising awareness of the need for donors, and to work with the sector and with patient and other voluntary groups. This will pose a concern for those who have for long wanted to see the HFEA take such a role, but may feel worried about an exercise that will inevitably focus on the financial incentives.
There are better and fairer ways of public policy decision-making than that adopted by the HFEA. It launched a wide ranging open consultation that apparently had no preconceived agenda or outcome — and then plunged into snap decision-making. It's a great way to conceal where you are going (if you know where that is) and quell opposition before it is too late. It's also handy for large multi-member bodies who don't really know where they are going until the members can be forced into last minute decision-making.
By contrast most other regulators, including the CQC, have a more mature regulatory style. To lay the groundwork for policy changes, they publish reports or discussion documents drawing attention to issues or problems, seeking responses. Only then do they consult on specific proposals which are open for debate and response. Whatever the Government decides about the institutional framework for fertilisation and embryology regulation, this episode should surely focus the health department's attention on ensuring a more mature and responsible style of future regulation for our sector.
Leave a Reply
You must be logged in to post a comment.