Most people who attend the open HFEA meetings are from groups that have a special interest in the scientific or clinical areas that the Authority regulates, and there are often academics and students of ethics and law as well. Sometimes actual people using fertility clinics come along, although they rarely say anything in the small window of opportunity offered for contributions from the public. It was different on Wednesday. First on his feet was a man whose partner is in need of a donor egg in order for them to start a family. She happens to be a black woman and so needs a donor of an appropriate ethnic origin. Dave, I’ll call him that, wanted to know why the information he and his partner require isn’t on the HFEA’s website. A private clinic in London had informed them that waiting times for caucasian donor eggs in the UK is two years and that they could wait five years for a black donor. The alternative offered was a clinic in Alicante. Dave and his partner don’t want to go to Spain, they prefer to stay in the UK, but the HFEA web site does not give any indication of which clinics are actively recruiting donors, which are most successful, what the waiting times are at each clinic and definitely not how to go about finding a donor from a particular ethnic background.
Dave’s straightforward questions floored the Chair for a moment, before she regained her poise and she and the Chief Exec explained that the HFEA is first and foremost a regulator. They clearly desperately wanted to be able to say that the organisation could meet Dave’s needs and one of the staff pointed out just how much information for patients they do have on their site, but they finally had to admit that they didn’t have the particular details that would make such a difference to Dave and his partner.
DC Network is very used to trying to help people like Dave. First of all by correcting the myth that needing egg donation inevitably means a wait of two years or more in the UK. This just isn’t so. Many centres are able to offer egg donation in well under a year but details of which clinics have short waiting lists are not available in any central place. The National Gamete Donation Trust http://www.ngdt.co.uk can sometimes help and so can DCN, but neither tiny organisation has the staff to keep proper track of the changing scene and it is only by talking to clinic staff and counsellors that we pick up such information. Should the HFEA be tracking such information and offering it on their site? Such activity is certainly not in their remit but since they already go to considerable lengths to try to help those in need of help in conceiving find an appropriate clinic, information such as that sought by Dave, would go a long way to really meeting the needs of patients. Currently web forums, such as Fertility Friends, are turned to as a source of information for people seeking egg donation and as often as not, they wax lyrical about going abroad.
Luckily for Dave, he arrived well before the meeting and we got into conversation. I was able to give him some strong leads about where to start looking for an appropriate donor and to let him know about the support available within DCN. But he asked an important question. Where can those needing egg or sperm donation go for unbiased guidance on clinics that have been successful at recruiting donors and where waiting lists are reasonable?