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Event Review: Patients Have the Right for an Anonymous Donor

29 July 2013
Appeared 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

'Patients Have the Right for an Anonymous Donor', organised by the European Society of Human Reproduction and Embryology, 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.

ESHRE 2013 - Nursing debate: Parents have the right for an anonymous donor
European Society of Human Reproduction and Embryology |  10 July 2013
30 November 2015 - by Nina Barnsley, Jennie Hunt and Julia Feast OBE 
The resounding message that came from the recent PET/NGDT event was that more needs to be done to support parents of donor-conceived children in telling them about their origins...
16 November 2015 - by Charles Lister 
The Chair of the National Gamete Donation Trust argues that the whole fertility sector must take seriously the need of donor-conceived children to know about their origins...
6 July 2015 - by Rebecca Carr 
The Australian state of Victoria has revealed plans to extend rules removing donor anonymity to allow all donor-conceived people access to identifying information about their sperm or egg donor, irrespective of the donor's consent or when they donated...
12 May 2014 - by Sarah Norcross 
I don't often put my hand up to review books when they pop through the letterbox. Normally, after the pleasure of opening the parcel and inhaling the scent of fresh book, I quickly put it on someone else's desk...
19 August 2013 - by Haema Sundram 
The recent judgment handed down in the case of M v F and H [2013] on 5 July highlights difficulties with regard to legal parentage in cases of informal donor situations, which are not regulated by the Human Fertilisation and Embryology Authority (HFEA)...
20 May 2013 - by Sandy Starr 
Should gamete donors be allowed to place conditions on who receives their donation? And should those considering having children via donor conception be encouraged to adopt instead?...
13 May 2013 - by Sandy Starr 
The Progress Educational Trust (PET)'s project 'When It Takes More Than Two', supported by the Wellcome Trust, sought to clarify public and professional understanding of donor conception by focusing on the different parties involved...
22 April 2013 - by James Brooks 
A podcast produced as part of the When It Takes More Than Two project organised by the Progress Educational Trust...
28 January 2013 - by Cait McDonagh 
The second debate in the Progress Educational Trust's project 'When It Takes More Than Two' took place at University College London last week. The debate, 'Receiving: The Recipient Parent Perspective', focused on the views of those who have received donor gametes to begin their families....
26 November 2012 - by Sarah Norcross 
Gamete donation is big business at the Fertility Show. Why do clinics from far and wide pay thousands of pounds to exhibit in London? The simple answer is to make money. But why come to the UK? Because in the UK there is a shortage of gamete donors, or at least a perceived shortage, that's why...
It's about the donor-conceived, not the parents. ( - 19/08/2013)
It's disappointing that people are still arguing in favour of anonymous donors.  The donor-conceived, rather than the parents, clinics, or donors, are the people most directly affected by donor conception, and they are the ones who have to live with the consequences the longest.  They also seem to be mostly against donor anonymity, and secrecy surrounding donor conception.  Some don't care, but there's no way for anyone to tell whether their child will want to know who the donor is or not, so they should always have the choice.

Will that seven-year-old donor-conceived child ('I don't care how you made me just as long as you made me') still feel the same way when they're seventeen or seventy?  There are lots of other adoptees and donor-conceived people who have gone in search of their genetic parents later in life, even after earlier saying they had no interest.

Countries that have already ended donor anonymity include the UK, the Netherlands, Sweden, Norway, Iceland, Finland, Switzerland, Austria and New Zealand.  Knowing what we know now, that list should be a lot longer.
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