07 March 2011
Chief Executive of the HFEAAppeared in BioNews 598
The HFEA's general stance is to be open to constructive criticism, to avoid being defensive when we get things wrong (which we sometimes do) and to be sanguine about those who, were they in our shoes, would do things differently (and, in their eyes, better).
Recently, BioNews has taken a preoccupation with the HFEA to new heights. However, I would expect comments about us and our work to be factually accurate. I therefore feel obliged to take the unusual step of writing to put the record straight about the facts of the article by Damian Adams and Dr Marilyn Crawshaw about our Donation Review in BioNews 596.
Contrary to Dr Crawshaw and Mr Adams' article 'Rising from the Ashes', it is not the case that the HFEA came under any pressure from centres to review our donation policies to reduce the number of people going abroad or increase their revenues. The interlinked areas of treatment abroad and the lack of supply of donor gametes and embryos - as much a concern of patients as they are of clinics - have been on our agenda for two years now because they are important in their own right (we had a paper at our December 2008 meeting).
Neither is it the case that the Donation Review is confined to an online questionnaire; the paper the HFEA considered at its December public meeting makes this abundantly clear. We have conducted a public opinion poll; we are running a series of focus groups and forums with relevant groups; we recently ran a policy seminar with the Society for Applied Philosophy on the ethical and policy issues; and we are holding a series of meetings for the clinics we regulate to ensure any new policies work effectively on the ground. The views expressed through all these means will feed into our final decisions.
The online questionnaire itself, following best practice in public consultations, asks specific questions and seeks views on a range of options, with space for respondents to give reasons for their answer. This ensures that everyone is given the same opportunity to give their views and allows us to compare like with like when analysing the responses.
No method of obtaining views is perfect and old-fashioned consultations which seek open-ended written submissions are also open to criticism. The method we have adopted reaches out to a wide audience and encourages participation in an easy-to-understand, accessible way. Indeed, in opting for a modern, online method we were following in the intrepid footsteps of at least - one other organisation
We didn't choose a consultation centred on an online questionnaire to save money, although we have minimised our costs (for example, by filming our videos in-house). Government spending restrictions did deter us from publishing a printed version of the consultation and from bringing in consultants to conduct field research. But we opted to go online as it is the best medium for most people.
Our current view is that issuing an online questionnaire was the right decision, given that, with seven weeks still to go, we already have received responses from nearly 600 individuals. If this response rate is maintained, it will be the highest we have ever achieved for a public consultation. The Australian inquiry mentioned in 'Rising from the Ashes' received 162 submissions. That said, we too admire the work that our colleagues in Australia have done and are inspired by the policies they develop.
Another criticism the article levelled at our consultation was it lacks transparency, but this isn't the case. Our approach has been discussed at six out of the last nine HFEA meetings (the papers are all online) and at three meetings of our Ethics and Law Advisory Committee (the papers are all online). We will continue on this basis: the meeting to consider the outcomes (in July) has been chosen because it is open to the public (again this is stated clearly in our papers).
We do not publish individual responses during our consultations because this could influence what later respondents say, creating methodological problems with our analysis. We have also considered data protection, confidentiality and the desire of some to keep their response private. Instead, our public consultations - which are not public inquiries - seek responses to questions, which we analyse in a systematic way. We encourage deliberation through events and focus groups, rather than by publishing responses as we go along.
What's more, it's not the case that the HFEA has ignored or paid too little regard to the views of donor-conceived people. We have made especial efforts to engage with them, as well as other key stakeholders, such as donors and parents. We have a donor-conceived person on our stakeholder advisory group (which shaped the consultation); we are running specific interviews with donor-conceived people and we have met with organisations representing their needs.
One final point: It's not true that our consultation is being undertaken without reference to the Nuffield Council on Bioethics consultation 'Give and take? Human bodies in medicine and research'. We have liaised closely with Nuffield and are working in tandem with them - though, of course, each body will stick to its own remit.
Now I've corrected all these points, I have one final thing to do. That's to say I hope everyone with an interest in the important policy choices that we are consulting on will contribute to our consultation. After reading this comment piece, you can respond knowing that the HFEA is going about its task in an open-minded, transparent and thoughtful manner.