The working party, which I chaired, was tasked with an extremely broad remit, taking in the complex issues of organ donation, gamete donation and 'first-in-human' clinical trials among others. Yet it was the very breadth of this enquiry that allowed us to compare how particular ethical ideas and concepts are used in different circumstances, and that helped us understand the importance of the context in which decisions and actions regarding the various encouragements and incentives in question could, and should, take place.
This comparative approach was particularly pertinent to our thinking about the ethical acceptability of encouraging women to donate eggs for others' treatment, or for scientific research purposes. Until the Human Fertilisation and Embryology Authority's (HFEA) decision last week to allow compensation at a flat rate of up to £750 per treatment cycle for expenses and lost earnings of egg donors (for others' treatment) (2) the amount women could claim for lost earnings was capped at £250, which left some donors out of pocket. We recommended that this cap should be removed and that lost earnings should be reimbursed in full, so we broadly welcome the HFEA's decision, although we remain firmly of the view that altruism should be the primary motivation for egg and sperm donation.
We note however that there is an important distinction to make between this type of donation and donating for research. Although the clinical process is the same, we felt that the motivations behind the act can be quite different. When donating for research, you are not trying to help a particular individual - you are more a participant in a research exercise, and the exact benefit that may emerge as a result is much less tangible than, for example, the possibility of being able to directly help another woman conceive a child.
A good comparison is that healthy volunteers in clinical trials are routinely paid for their time or inconvenience. Women who donate eggs for research go through considerable discomfort and inconvenience in order to benefit scientific progress and wider society, and we think it is only fair that their contribution is properly recognised. One of the key recommendations made in this report, therefore, is the suggestion of a pilot scheme to offer payment above and beyond expenses, to reward those willing to donate eggs for research purposes. Such a pilot should be accompanied with stronger welfare protection for donors. A national register of gamete donors would enable repeat donations to be limited, and for research to take place on the long-term health effects of repeat donation. The scheme should also guard against inappropriate targeting of potential donors in other countries.
That this recommendation falls at the top end of the Council's 'Intervention Ladder' – put forward as a tool for considering the ethical acceptability of various ways of encouraging people to donate – is rather an exception. A key conclusion of the report is that altruism should continue to be at the core of the donation process as far as possible, but that, in some circumstances, some form of reward may be ethically appropriate. The two need not be incompatible.
The six rungs of the 'Intervention Ladder' are as follows. Numbers one to four are all 'altruist-focused interventions', intended to stimulate people's altruistic motivation, whilst numbers five and six are non-altruist-focused interventions.
- Information about the need for the donation of bodily material for others' treatment or for medical research
- Recognition of, and gratitude for, altruistic donation, through whatever methods are appropriate both to the form of donation and the donor concerned
- Interventions to remove barriers and disincentives to donation experienced by those disposed to donate
- Interventions as an extra prompt or encouragement for those already disposed to donate for altruistic reasons
- Interventions offering associated benefits in kind to encourage those who would not otherwise have contemplated donating to consider doing so
- Financial incentives that leave the donor in a better financial position as a result of donating
In thinking about how more people could be encouraged to donate eggs and sperm, we also found that there were options geared towards facilitating altruistic donation that hadn't yet been tried.
For example, we recommended that a national or regional egg and sperm donor service should be established to co-ordinate recruitment of egg and sperm donors for fertility treatment, along the lines of the current system for organ and blood donation. The HFEA's proposal to set up a national strategy group to 'raise awareness, improve the care of donors and ensure that donation continues to take place within a safe and ethical environment' through working with the IVF sector seems to be a good starting point.
When it comes to 'egg-sharing', it seems likely that many women agree to do this to get treatment they would not otherwise be able to afford and cannot access through the NHS. However, there is some evidence that, once a woman has taken the decision to share eggs, she feels a sense of solidarity with the recipient she is helping. This fits into an altruistic model of donation, and given the likelihood that some women will continue to experience difficulties in accessing NHS IVF treatment, we did not see any reason to recommend a change to the current policy of permitting egg-sharing at this time.
Finally, the report endorses the importance of the donor's well being as the primary factor to consider in this area, for it is one where private concerns can also be a matter of public interest.