29 July 2013
ByAppeared in BioNews 715
Patients Have the Right for an Anonymous Donor
Organised by the European Society of Human Reproduction and Embryology
ExCel Centre, 1 Western Gateway, Royal Victoria Dock, London E16 1XL
Wednesday 10 July 2013
Given that the Progress Educational Trust (PET) has just completed a project on gamete donation I was more than intrigued about this debate, which took place at the European Society for Human Reproduction and Embryology's annual meeting in London.
Despite the slightly odd framing of the question I was looking forward to a really good discussion and getting a wider perspective on gamete donation. One speaker was from Denmark, where donor anonymity is still the norm, and the other from Sweden, where identity release donation was introduced in 1985.
Associate Professor Lone Schmidt, arguing for the motion that parents do have the right to an anonymous donor, started by quoting a seven-year-old donor-conceived child: 'I don't care how you made me just as long as you made me'. Schmidt, from the University of Copenhagen, said that longitudinal cohort studies have shown that gamete donor families, including those who have used anonymous donation, have functioned well.
It is generally accepted that non-disclosure by the parents about donor conception and the child subsequently discovering by accident that they are donor-conceived can be damaging. So, she continued, using the treatment method that suits the parents best will increase the probability that the parents tell the child how it came into the world.
Open identity donation was introduced in Sweden in 1985 but research has shown that only 11 percent of children had been informed that they were donor-conceived. Schmidt postulated that mandatory open identity leads to a disclosure paradox where parents are more reluctant to be open with their children about their conception.
Finally she argued that there is no reason to believe knowledge of genetic origin is a fundamental prerequisite for psychological well-being, identity and social relations.
Dr Claes Gottlieb, a physician from the Sophiahemmet IVF unit in Stockholm, argued against the motion. He started by saying that although his opponent had been rather balanced in her arguments, he was not going to be so measured. He argued that the title of the debate was wrong and that it should be 'Do children conceived through gamete donation not have the right to an identifiable donor?'
He argued that it was the child's interests and rights that should come first and that children have the right to know their genetic origins. He pre-empted a counter argument that children who are conceived naturally don't always know their genetic parentage by saying the 'State can't go in to the bedroom', but where outside help is needed to conceive a child the State has a role.
In countries where there is still donor anonymity the demand for identity release donors is increasing, he said. As evidence he referred to one clinic in the USA where 80 percent of patients chose an open donor.
Why is identifying information important? Because of the desire to know one's roots, curiosity, for medical problems such as needing a bone marrow transplant and the need to understand the donor's motives. In a Swedish study of parents of donor conceived parents of children aged one to four years, 78 percent of parents planned to tell and 16 percent had started to tell. 'If you were a donor conceived child', he asked, 'wouldn't you want identifying information?'
Gottlieb sealed his victory in the debate with his finale, which was without doubt the most surreal moment of ESHRE, European Society for Human Reproduction and Embryology. In a pleasing tenor voice, he sang an amazing rendition of Monty Python's 'Every sperm is sacred' where he changed the word sacred to secret (you can listen to it here, about 21 minutes in). The conference was transformed to an audition for the X-factor and the audience whooped with delight.
Even with this unexpected treat I was disappointed by the session. The problem with debating a motion is that the speakers can win by using sophistry and pedantry and the nuance around a sensitive topic such as donor conception can be lost. These speakers could not be accused of doing this but I felt that at times they strayed too far from the motion and the discussion focused too heavily on disclosure to the child that they were donor-conceived rather on the anonymous status of the donor from the patient's perspective.
The conflation of these issues and the failure to tease out whether there was any difference in the recipients' attitudes to anonymity, depending on what gametes they needed, and also whether different types of recipients such as single women have different preferences for identifiable donors, was unfortunate.
Please note that this was a debate and the arguments put forward by the speakers may not be the views they hold.