Over the past few days there has been a spate of articles in the media informing us that the Human Fertilisation and Embryology Authority (HFEA) intends to increase the rates of payments – sorry, ‘compensation’ – given to egg and sperm donors. Despite claims from the Chair of the HFEA today, Lisa Jardine, that no decision had actually been made prior to their meeting to discuss it, in fact the recommendation went through today with hardly a murmur of dissent from the Authority members ‘debating’ it.
Before today’s decision, anyone who donated their eggs or sperm could receive any expenses they incurred – at an amount that was uncapped – and could receive compensation for their loss of earnings of up to £250 in total for each cycle of donation.
Now, egg donors will receive triple this. They will receive a fixed sum of £750 per cycle of donation, which includes expenses, although donors who incur particularly high expenses for travelling will receive more. Sperm donors will receive a fixed sum of £35 per visit, also including expenses.
By providing a sum per visit, sperm donors could earn on average £525 instead of the existing £250, because they typically donate on 15 separate occasions, an HFEA spokesman explained. This figure would obviously rise if sperm donors donate more often.[1]
The HFEA members were told today that the amount of £750 for egg donors is based on the amount given in Spain, while the £35-a-time fees for sperm donors is modelled on Denmark’s, where men receive that amount per donation, without any ceiling on the amount they can earn.
The ‘compensation’ level set by the HFEA is limited by the European Union Tissues and Cells Directives which states that “Donors may receive compensation, which is strictly limited to making good the expenses and inconveniences related to the donation. In that case, Member States define the conditions under which compensation may be granted”. Therefore, outright payment for donation is not allowed by law.
The public were able to listen to the HFEA discussion but not join in. It was striking and disappointing how little real debate or discussion there was at the meeting about an issue that has significant ramifications for both the health of women and the welfare of potentially thousands of children. (The HFEA estimates that around 2,000 babies are born here every year using donated sperm, eggs or embryos). It seemed to me that there was an unspoken assumption that the HFEA recommendations, delivered by their Head of Policy, would simply be accepted. The media for the past few days have clearly thought the same.
It was left to a member of the public at the close of the meeting to voice her depth of disappointment at the decision, and express the obvious concern that no matter how much these sums of money reflect compensation for actual expenses, the perception will always be that this will be a payment to donors. It will inevitably create a financial incentive for women who would not otherwise donate. For example, what about students (who are the target of egg donor recruitment in the US) in this country? They will have few expenses to cover (eg. child care) and will be unlikely to suffer a loss of earnings, but will be facing higher tuition fees, and surely will be attracted by the offer of £750 for donation. Or what about women from abroad, perhaps from low income Eastern European countries, who will receive the same levels of compensation but not travel costs? Surely this will become an inducement to fly over on Easy Jet to donate?
There are many other issues that gamete donation raises but two that deserve particular mention are the risks to women and the concerns for children born as a result.
Egg harvesting is an invasive and dangerous process and women should not be induced with ever larger sums of money to incur such risks. Yet there were only passing comments on the medical risks to egg donors. Egg donation involves daily hormone injections, scans every couple of days, and day surgery to recover the eggs. Side-effects range from mood swings, bloating and pain, to more unusual but severe over-reactions to the hormones.
Ovarian hyperstimulation syndrome (OHSS) is a known danger.This is where the ovaries over-respond to the hormone injections used to stimulate the growth of the follicles that contain the eggs. This can result in the ovaries enlarging with some resulting abdominal discomfort. Occasionally, fluid can accumulate in the abdomen and cause abdominal distension. Sometimes fluid can form around the lungs and heart as well. This can result in blood thickening making the kidneys less efficient and increasing the risks of a blood clot which can be an extremely serious complication. Approximately 1 in 100 to 1 in 200 patients will need a short stay in hospital because of hyperstimulation. Approximately 1 in 1000 patients can develop severe hyperstimulation as described above.
As for the effect on children, Lisa Jardine, the HFEA Chair, did acknowledge that gamete donation is unique, and should be seen as more than just a moment of donation, because it will impact several generations hence. The gametes produced now will produce children, and their children, it is not just a ‘one-off’ event. There were a few nods of agreement about the need for research on the long-term impact for these children, but this did not detain the discussion and decision-making for too long.
The effects on children born of donated gametes deserve far more consideration than the HFEA has given them. Donor conceived adults are increasingly speaking out about the profound effect that the loss of their biological heritage has on them but as yet, not many seem prepared to listen to them. Their voices deserve to be heard, not just the voices of those who are infertile, or those who are donors, or indeed, those who are deciding on all their futures.
Joanna Rose was conceived by donor insemination over thirty years ago and says this of her conception:
“Just as infertility is grieved, because people grieve the loss of having and raising their own genetic children, so too can that loss be mirrored by not knowing or being raised by one’s own genetic parents. Indeed, for many, this loss is exacerbated when it is intentionally and institutionally created, unlike infertility… this loss has been identified by leaders in the field as having a lifelong impact.” [2]
[1]The number of families created using gametes from one donor must not exceed 10.There is no limit on the number of children within each family. This limit is likely to be reviewed by the HFEA.
[2] Who Am I? Experiences of Donor Conception, Idreos Trust, 2006