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Registering concern: should anonymous gamete donors be encouraged to reregister and if so how?

15 June 2009
By Antony Starza-Allen
BioNews Volunteer
Appeared in BioNews 512
The entitlement to anonymity of UK sperm and egg donors ended in 2005, a development that has been welcomed by those who spent long years campaigning for it, and criticised by those who blame it for a current shortage of donor sperm and eggs. Because this change in law applies only prospectively, it remains difficult - if not impossible - for previous generations of donor-conceived individuals to locate their genetic parents and other genetic relatives. Initiatives such as UK DonorLink and its overseas equivalents have done much to redress this, but the only thoroughgoing solution at present is for anonymity-era donors to elect to join the non-anonymous donor register.

Whether and/or how to encourage donors to re-register in this way is a difficult question. Some donor-conceived individuals insist that they are entitled to know their genetic provenance, not just for practical reasons of medical history but also to address profound difficulties of psychology and identity. Others counter that revealing the identities of anonymous donors is an unconscionable breach of the terms on which they donated in good faith and, that at the very least, the donor's consent must be a prerequisite for identifying them. But how does one solicit consent from a group of people whose identity is, by definition, unknown?

To try and answer this question, the Progress Educational Trust staged a debate at the UK Houses of Parliament on Thursday 11 June 2009, with financial support from the Donor Conception Network (DCN) and the National Gamete Donation Trust (NGDT).

The panellists included Danielle Hamm, speaking on behalf of the Human Fertilisation and Embryology Authority (HFEA); David Gollancz, a donor-conceived campaigner for the abolition of donor anonymity; Jennifer Speirs, an Honorary Fellow in the School of Social and Political Studies at the University of Edinburgh; and Will Calder, a sperm donor. The debate was chaired by Allan Pacey, Senior Lecturer at the University of Sheffield School of Medicine and Biomedical Sciences.

Why should donors register?

David Gollancz spoke generally of the importance of taking possession of one's personal history and of the injustice in depriving someone of this information. David was open about his own experiences and his personal narrative served to ground what can sometimes become an academic argument.

He described the 'energy' that is generated between the donor and their donor-conceived offspring when they meet for the first time, which seemed not only to resonate with the rest of the panel but also with members of the audience.

Will Calder, who has been a sperm donor, said that it was upon hearing David speak in a TV documentary some years ago that his views on donor anonymity changed and he decided to make himself identifiable to the children conceived using his sperm.

These personal accounts really illustrated the issues surrounding re-registering pre-2005 donors and the benefits it can bring to both the donor and the donor-conceived. What became clear is that the meeting of a donor and the donor-conceived offspring can be an emotional and joyous occasion. The panel enthused the audience with stories of parties of 100+ donor-conceived children and their genetic parents. It is such positive visions that need to be heard in a debate that can so easily remain prohibitive and abstract in arguments about confidentiality and data protection.

What was not clear, however, was what this 'energy' or 'desire' really represents. On this occasion it may not have been appropriate to discuss the psychological afflictions that children may suffer when being told that their 'parents' are not in fact their genetic parents -that they have an unknown biological father out there, for example, and what affect this has on the existing familial harmony. The inclusion of another mother or father into a family setting will be disruptive on many levels and the seriousness of the consequences warrant a full discussion of the reasons why donors and donor-conceived offspring alike feel that they should be identifiable.

Why are donors reluctant to register?

Jennifer Speirs provided an extremely insightful serious of points to illustrate why some donors are reluctant to register, based upon her own research. She spoke of a concern over a sense of responsibility towards the donor-conceived child, the level of involvement that may come about, the concern about financial support, the time and effort in registering and the gap in attitudes between donor and child.

Jennifer also suggested that donors are concerned about usurping what she termed the 'social' parents. Will Calder agreed, adding that at times he lost sleep worrying about the impact his identity would have on the fathers of his genetic offspring. A member of the audience, a 'social' parent himself, strongly denied this. Indeed, it was discussed how introducing the genetic parent into the family of the donor-conceived child can improve the child's relationship with their 'social' mother or father. The discussion did turn to the importance on genetics and whether too much 'premium' was placed on a person's genetic origins - the long-running nature/nurture debate - and indeed whether there is a possibility that discussion surrounding a person's genetic history artificially inflates the significance of genetics. However, the importance of curiosity in knowing one's genetic history is entirely subjective, no matter the consensus on nature or nurture.

Central to the reluctance of donors to reregister (only 77 have done so far according to Danielle Hamm) may be that those who donated pre-2005 did so under a different set of regulations and the belief that they would do so anonymously. Will said that he considered donation as a 'contract' with the social parents - the donor-conceived siblings did not come into the equation. It only later occurred to him that there is another dimension: that of the wishes of the donor-conceived offspring.

Likewise, parents using donated gametes were under the belief that their children would not be able to identify their genetic parent (the issue of whether it should remain the parents' choice to inform their children of their genetic origins remains hotly contested). A member of the audience highlighted this concern with reference to when he and his partner used donated gametes to conceive their child. When this decision was made, he said, it was his understanding that their child would never meet their genetic father.

These are all concerns that must be taken extremely seriously. The current framework established by the HFEA is arguably neutral and only operates for those who wish to become identifiable and for those who wish to seek out their genetic parents. Yet in encouraging pre-2005 donors to come forward it should be asked whether in all the circumstances they should be reasonably expected to do so.

What is the way forward?

The panellists and audience alike clearly felt this was an issue of communication between all stakeholders - the donors, the donor-conceived, the regulators, charities and so on. Will Calder called for a more active HFEA to start marketing a positive message encouraging pre-2005 donors to come forward. The danger with this is that in some circumstances it is possible to imagine how such a 'union' could in practice be very traumatic for some or all of those involved. Danielle Hamm maintained that pre-2005 donors will not at present be actively pursued and encouraged to re-register and said the HFEA remains neutral and objective when imparting information.

If not the HFEA, then re-registration could take place through donor organisations - the Donor Sibling Registry in the US could be an example to follow. Data protection and confidentiality aside, a more proactive donor and donor sibling movement could safely emphasise the positive factors and the enriching experience that became so clear in the debate without the risk, or more accurately the accountability, of raising false hopes and expectations. It is difficult to predict the trajectory of any policy on reregistering pre-2005 donors but this debate has revealed that the way forward can only be one that facilitates more discussion and communication of the candour and understanding as was demonstrated.

Endnote

Unfortunately, a debate which so illustratively conveyed the positives and potentially enriching experience of uniting donors with their genetic offspring, failed to adequately address another side of the issue. Namely, that what is right for the many - or even just those sat in the room (who were self-selecting) - may not be right or fair for all.

Representing a minority of dissent, one member of the audience referred to the stress and confusion caused to donors and donor-conceived children surrounding the anonymity laws and suggested that the law grants rights to donor-conceived people that those naturally-conceived simply do not have.

David Gollancz replied that the laws are not about creating inequality but ensuring equality. True, but nevertheless positive interference into the social interactions of the public - whether it is to support one group in particular or to promote equality - must be justified with reference also to both donors and offspring (and their families) that wish to remain anonymous.

The potential social and psychological disruption of uniting donors with genetic offspring cannot be swept away in a tide of emotive support for uniting donor-conceived children with their biological fathers. So, whilst the debate unveiled a dimension to the issue of gamete donation in a way that may not have been possible had it been more two-sided and thus defensive, this must still be balanced against the fact that some prospective donors are put off by the prospect of being identified, or the concern of donor-conceived children and their parents of the effects that identifying genetic parents might have on both the welfare of the child and for family harmony.
SOURCES & REFERENCES
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