07 November 2005
Manager, 'How to Tell' project: Donor Conception NetworkAppeared in BioNews 333
Nearly all those with experience of child development, personal identity, and family welfare have been saying for years that donor conceived children should be told, and that a policy of letting couples mislead their children about their origins was seriously misguided. So how come it has taken the HFEA so long?
In the early post-war days when DI (donor insemination) treatment was beginning, it was natural that doctors offering the service would want to keep it top secret. Its lawfulness was in doubt (aiding and abetting adultery?), donors would, if identified, bear legal liability for children, and male infertility bore an undeniable stigma at the time. It was in everyone's interest to cover up.
By 1984 Warnock was warning that as AID (artificial insemination by donor, as it was then known) was surrounded by secrecy, the effect on children who might feel that they were deceived by their parents might be a matter of concern. The report stated that the impact on children of learning by accident would be harmful. The Committee said clearly that it was wrong to deceive children about their origins, but this was an argument against current attitudes, not against AID itself.
When the HFEA Code of Practice first emerged in 1991, all it could muster was that parents should be encouraged to consider the child's 'potential need to know' about its origins. 'Potential' was a let-out word for anyone, clinician or patient, who preferred the idea of keeping everything secret.
Where, after all, was the evidence? Where were the double-blind trials, the peer-reviewed articles in scientific journals which proved that secrecy was harmful? That was what medics were used to looking for. The strong consensus among child psychologists and social workers about the toxicity of secrets in families was - and still is - invisible to them. Of course there was never any evidence that the policy of secrecy was justified as beneficial. The fact is that the kind of research clinicians yearn for just isn't possible - and never will be. So for lack of 'evidence', while thousands of donor-conceived children were born, the HFEA continued to acquiesce in clinical practices where patients were advised not to tell.
Fast forward to 2002. Mr Justice Scott Baker rules that 'respect for private and family life [a human right] requires that everyone should be able to establish details of their identity as human beings. This includes their origins and the opportunity to understand them... an AID child is entitled to establish a picture of his identity as much as anyone else'. No reaction from HFEA about the need to tell.
In the same year, the DH consults about anonymity removal, and in its response HFEA notes: 'the deliberate concealment of such information can have an injurious effect on an individual's familial and social relationships and sense of self-worth, particularly if that information is later discovered in an unplanned manner... Therefore, it is felt that the principle of openness should be encouraged'.
Encouraged by whom one might ask? The Government finally decides to end donor anonymity, but tackling the issue of parents telling children is left. It emerges only as a side issue in the HFEA welfare of the child review which seems more concerned with the extent to which GP checks should be made on IVF patients.
In March even the Science and Technology Committee accepts that 'openness is a good thing'. And finally the Government in its review of the Act appears to lose patience with the pace of change. Under the heading 'Parents' responsibility to tell children if they were donor-conceived' (the first time anyone has set out that proposition authoritatively), it asks what measures would be appropriate to ensure that parents tell donor-conceived children of their origins.
So, 21 years after the Warnock warnings, 13 years after the founding of the Donor Conception Network, the HFEA finally accepts that the statutory requirement that 'account must be taken of the welfare of any child' must mean ensuring that the child will be told of his or her origins. There is always joy in heaven for the sinner that repenteth!
The Department of Health (DH) is currently seeking views on the Welfare of the Child, as part of its review of the HFE Act. The public are invited to respond formally to the DH. BioNews readers and any other interested individuals are also invited to informally debate their views on the welfare of the child, on a DH-funded online discussion forum run by Progress Educational Trust - the charity that publishes BioNews. Issues such as the need for a father, telling donor-conceived children about their origins and patient's views are currently being discussed in the 'Welfare of the Child' area. Feedback from this time-limited website will be submitted to the DH after the public consultation closes on 25 November 2005. Your views are much valued and all are welcome to contribute.