A possible review of the law relating to donor anonymity has been proposed by Human Fertilisation and Embryology Authority (HFEA) chief executive Peter Thompson (see BioNews 1145). He suggested that commercial websites were making it impossible to preserve the anonymity of donors. The idea is that, instead of waiting until a child is 18, identifying information could be released to parents as early as the time of birth.
The existence of commercial DNA databases was the only reason given in his interview with the Guardian, but such a change would have implications, not only for donor conceived children, but for their parents, the donors, and for clinics.
Under the current UK law introduced in 2005, the first children will be entitled to apply for identifying information about their donor parent(s) when they reach the age of 18 in 2023. We do not yet have any information about how the current system will work, what sort of numbers will seek information, and how any relationships with donors might develop. If it were not that a review of the entire act is proposed, this might seem like an odd time to be suggesting an overhaul of a system that has not yet fully taken effect.
Sweden put a similar system in place, as far back as 1985, which allowed people conceived by donor insemination to have access to the identity of their donor on reaching the age of 18, from 2003. Seventeen years after the first release of information, out of 900 people who had reached 18 between 2003 and 2020, 60 applied for information about their donor, a study in Human Reproduction revealed. This low uptake may be in part due to parents not informing their children about their origins, but is also clear that not everyone wants or needs this information. It is also unclear exactly how much interest donors should expect from their offspring decades after the event.
Under the existing UK system, donor conceived people are the only ones who can apply for, and receive, identifying information about their donor. This puts them in control. It might be argued that this control is limited, because they must reach the age of 18 before having access, and they must also know they were donor conceived in the first place. On the other hand, they are expected to be capable of mature, independent decision-making by the time they are able to access the information, which should protect them, and their donor.
If donor-identifying information is handed over to parents, this puts them in the driving seat, and any future communication with the donor is likely to be managed by them, despite the fact that theirs is not the key relationship, and their interests are likely to be different. On the other hand, knowing the identity of the donor might prove more intrusive for some families, particularly for whichever parent had the fertility issue that led to the use of a donor.
Ishii and Beriain suggested in their paper in BMC Medical Ethics that, to protect all parties, an agreement about communication should be reached, between the prospective parents and the donor, prior to insemination, and that this should be dealt with on a case-by-case basis, and modified when the offspring are old enough to have opinions. This would be a practical, logistical, and potentially ethical, nightmare, and such agreements would be impossible to enforce.
This begs the question: if a legal system, which currently places donor conceived people at its centre, really needs to change?
Looking at the stories online, the majority of people tracking down their donor parent using consumer genetic databases are from outside any system that would have given them access to information about their donor (and often from outside the UK). While this phenomenon may well grow in the future, the size of the problem will be mitigated by the fact that few donor individuals can be found on either the consumer databases or the Donor Conceived Register, and the fact that donor conceived people have the opportunity to find out the identity of the donor when they reach the age of 18 (if they want to). In any case it would be reasonable to counsel donors that contact outside the Donor Conceived Register by looking at consumer databases might be possible.
We also need to consider the impact on potential donors and any impact on recruitment which is not easy at the best of times. While the HFEA's chief executive pointed out in his interview with the Guardian newspaper that we have no hard evidence that such a change would impact negatively on donor recruitment, we cannot claim to have any evidence to the contrary as yet.
A particular concern would be the recruitment of donors from ethnic and religious communities, particularly small communities. Patients and donors might well be concerned that they could be connected in some way that threatens the confidentiality of their treatment, and they may be compromised because of religious prohibitions on donating or receiving donated gametes. In addition, it might well be a concern to all donors that parents and potential parents might contact them over any issues that arise as the child develops. This situation cannot be compared with that of 2005, when donors where informed that they might be contacted when the children reached 18. This proposal lets out their identity from the beginning.
Another practical consequence of removing anonymity altogether would be the potential to hand the responsibility for passing on donor identifying information, and managing the consequences, to clinics. The lack of an 18-year time lag, might, in the eyes of the regulator, remove any obstacle to adding this to clinic's obligations, and this may have some appeal (to the regulator).
The current UK system allows donor conceived people to control what contact they wish to attempt with their donor, and the requirement to reach the age of maturity protects both parties. It is a framework which allows parents to manage their children's expectations, so that they are aware of their origins, and of the potential to identify their donor at 18. Persuading prospective parents to tell children about their origins is, in my view, a much more important factor in the healthy, emotional development of these children.
To abandon any concept of anonymity because of the risks posed by commercial databases, is, as Professor Guido Pennings said in Human Reproduction in 2019: like abandoning, or denying the existence of, speed limits, purely because they cannot be fully enforced. To quote Professor Pennings again, anonymity, despite the existence of genetic databases, 'expresses a wish for distance and privacy by both recipients, and… should be respected by all parties in good faith.'