30 September 2011
ByAppeared in BioNews 627
What might clinics and their patients expect from the HFEA later this month? When the public consultation was announced on 9 December 2010 the overriding question was whether 'compensation' should cover 'inconvenience' as well as expenses and loss of earnings. The public discussion from then on has often assumed that money would solve the UK's egg and sperm donor crisis, and that donor fees would be increased. Give them more, and they will come.
It has been repeatedly shown, however, that 'compensation', is not the only reason why donors donate. Two studies from The London Women's Clinic (LWC) presented at this year's ESHRE annual meeting in Stockholm show that both sperm and egg donors can be adequately recruited within our existing legal framework and without recourse to financial incentives.
First, a 2010 study (1) showed that a sympathetic and humorous recruitment campaign for sperm donors drew more than 3000 enquiries and resulted in 397 (13 percent) potential donors attending for interview, 124 actually recruited and 2410 vials stored. These would theoretically provide at least 2000 treatment cycles, sufficient for around half the UK's annual donor insemination (DI) demand. We thus concluded that an estimated annual requirement for 500 sperm donors in the UK could be easily met without excessive payments to donors and without any policy overhaul. A far better (and less expensive) approach would be to encourage behavioural change based on altruistic intent and a more committed donor.
Second, a study of 498 egg-sharing cycles performed at the LWC between January 2005 and December 2009 (1), in which IVF patients received subsidised treatment in return for the donation of surplus eggs, found high and comparable birth rates per transfer between egg sharers and egg recipients (45 percent vs 32 percent), with no apparent outcome in favour of one or the other. These same conclusions were drawn in a larger study of two combined egg-sharing programmes involving more than 900 cycles (2).
This data underlines the potential of egg-sharing to help solve the UK's shortage of donor eggs, without any need for payment or the recruitment of non-patient volunteers. 'Egg-sharing' means that only those needing and wanting IVF are actually treated; commercial or voluntary donation turns non-patients into patients and may dilute the quality of their consent.
Payment, whether as compensation for time and trouble or even the larger amounts reported from some countries, makes no recognition of the potentially serious risks, including the risk of developing cancer, which some donors may face in the future (3-5). Even in the HFEA's data bank of approximately 15,000 volunteer donors, this risk has never been quantified. We only see casual references to IVF as being a 'safe' procedure for women being treated for infertility, but no information on the longer-term risks to non-patient donors in egg donation programmes. In the absence of such disclosures, the declaration to develop 'evidence-based' policies is difficult to justify.
European law enshrined the importance of altruism in the context of gamete donation (amongst other things) in the EU Tissues and Cells Directive, which stated explicitly that donation programmes ‘should be founded on the philosophy of voluntary and unpaid donation'; these very principles ‘contribute to high safety standards for tissues and cells and therefore to the protection of human health' – and in my view should form the basis of UK policy in relation to donor compensation.
There are also wider legal implications beyond EU law, mainly in relation to informed consent, for which we have a duty to inform patients of the risks associated with surgical and clinical procedures. While the consent process for paid egg donation differs from that of surgical cases, the principle remains the same and patients must be notified of risks in a manner that adequately takes account of their autonomy, personal interests and priorities. With no long-term data and therefore no guidance to licensed centres, in the current debate it would be presumptuous to assume no future risks.
In announcing its public consultation the HFEA spoke of a 'changing landscape' in gamete donation but made no mention of the huge impact of new communication technologies, particularly social networking. This digital connectivity has dramatically changed the landscape, both in increased recruitment and in creating a sense of community amongst gamete donors. When we carried out our first survey of egg-sharers' motivations in 1996, such communication was not possible. Now, donors share their thoughts online with us in a spirit of community and altruism which suggests that monetary compensation plays little part in their motivation to donate.
Our evidence also shows that couples and single women will still share their eggs even when non-sharing funded treatment is available on the NHS. Published research consistently suggests overwhelmingly positive attitudes (90 percent) towards egg-sharing, with almost no difference in response between those who shared and those who received. Since 1998, more than 30,000 sharers and recipients have benefitted from egg-sharing schemes in over 40 licensed NHS and private egg-sharing centers. It has been repeatedly shown that the attraction of subsidised treatment is not the sole reason for sharing, and that only in very rare cases do respondents express any regret, even when their own treatment cycles did not succeed.
The findings of the consultation on compensation will soon be presented to the HFEA. In my view, it is unsubstantiated and naïve to assume that money will resolve the UK's donor crisis. Our data shows that a reliable supply of donor sperm can be generated through targeted and caring campaigns. With consistent staff training and comprehensive information given to patients, egg-sharing programmes can produce sufficient donor oocytes. Indeed, we already exceed the estimated need of 1200 donor egg cycles suggested by the HFEA.
A campaign to solicit donor eggs through payment has a high chance of failure and it may be putting some donors at risk. Instead, why fix what already works? The benevolence of non-patient women who wish to donate eggs to help others should be saluted and encouraged but it should not be driven by a policy to commercially recruit donors. Egg-sharing should be promoted as an effective policy and as an example of mutual self-help in reproductive medicine. Such a campaign, unthreatened by repeated public consultations, would encourage more egg-sharers to come forward and a trusting and self-sustaining group of egg-sharers could grow and flourish.
There are many good reasons to preserve the current HFEA policy in relation to compensation and reimbursement; there are absolutely no good reasons to alter it.
The meeting at which the HFEA will decide how much and what sort of compensation (financial and otherwise) sperm and egg donors should be permitted to receive for their donation will take place in London on Wednesday 19 October 2011, and is open to the public. If you are interested in attending, contact the HFEA at or on +44 (0)20 7291 8221.