Sadly, there are currently not enough egg and sperm donors in the UK to meet our needs. Recipients are now seeking alternative routes to find donors, either by travelling abroad or from unregulated internet sites: both with the potential for unwanted consequences.
We at the National Gamete Donation Trust (NGDT) are charged with raising awareness of the need for gamete donation. We know that, despite concerns, the numbers of new egg and sperm donor registrations have risen since the removal of anonymity in 2006 (1). Britain is the only country in Europe where removal of anonymity has not led to a decline in gamete donation. However, the number of potential recipients has also increased and so we need to find ways to recruit even more donors. Once we have helped clinics recruit donors, we need to be satisfied that the donors will receive the sort of attention in the clinics that will encourage them to persist and complete a course of donation. Otherwise all our efforts will be wasted.
There is very little information on how many donors drop out along the way, and why. If we knew why potential donors changed their minds then maybe we could share this information with the recruiting clinics and reduce the number of donors who get disheartened and do not proceed.
To this end, in May 2011 the NGDT set up a series of questionnaires: one for sperm donors; one for egg donors; and one for potential donors (donors who offered to donate and in the end decided not to go ahead). As far as we know, this represents the first attempt to gather information directly and anonymously from donors.
The survey was devised by Dr Laura Machin, Lecturer in Ethics at Lancaster University Medical School, and ran until August 2012. The results were then analysed by Dr Machin. The full report can be read here.
In summary, 153 people completed the questionnaire: 72 egg donors (with differences between altruistic and shared egg donors examined); 48 sperm donors; and 33 potential donors. However, because we did not specify that respondents should have donated between May 2011 and August 2012, the data may have come from donors who donated before. This means we are unable to say accurately what proportion of gamete donators during that period responded to the survey.
The key findings of the survey included that donors reported it was often difficult to get good, upfront information on the structure for reimbursement, leaving them embarrassed to ask and that most donors felt they should be reimbursed. Donors also reported difficulty with getting time off from their other commitments to attend the clinics and they requested more flexible clinic hours. Donors requested that information was more readily available about the outcome of their donation.
The findings also showed that, in general, donors were positive about their donation in UK clinics. Respondents said the relationship between a donor and the clinic staff was key to the success of the donation and that, specifically, a single point of contact in the clinic and prompt service both impacted positively on the donors' experience. Donors did not feel the process ended with the donation itself. The need to have their feelings considered was also expressed and a number of respondents requested further opportunities for counselling.
The remit of the NGDT also includes ensuring that clinics have systems in place to give donors the best possible care and we are developing an accreditation mark (Donor Centres of Excellence) and are in the process of putting it into place. To validate this system we need to take into account what donors tell us makes them most likely to complete donation.
So we would like to strengthen our data and ensure that it continues to be up-to-date. For that reason, we are re-opening the survey and intend to report on the results annually. By doing this, we hope to gather data from a more representative number of donors. We have added a question to determine the dates over which they donated. We want as many donors and potential donors as possible to give us their views.
We would be grateful if any BioNews readers could alert any donors that come their way to these surveys and ask for their help in giving us their opinion. The surveys can be reached via this link.
Recruiting clinics need more donors and need to retain those who offer to donate. We hope by hearing from as many donors as possible we can more accurately advise clinics about what donors want from them. Measuring is knowing, and knowing is improving.