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Donor information - time for a debate

27 February 2012
By Dr Marilyn Crawshaw and Walter Merricks
Marilyn Crawshaw is an honorary fellow at the University of York; she co-chairs PROGAR and is national adviser to UK DonorLink. She is writing here in a personal capacity. Walter Merricks is Chair of Donor Conception Network, the UK support group for families affected by donor conception.
Appeared in BioNews 646
It is now eight years since the Human Fertilisation and Embryology Authority (HFEA) first issued guidance to UK licensed treatment centres to respond as fully as possible to patients' requests for non-identifying donor information. This, the HFEA said, 'may benefit those concerned, for example by allowing parents to make informed decisions about the controlled disclosure of information to their children' (1).

The Human Fertilisation and Embryology Act 2008 then mandated clinics to provide information to prospective parents about the importance of telling any offspring, at an early age, of their donor-conceived origins and about suitable methods of doing so. The current HFEA Code of Practice (2) is clear: clinics should provide non-identifying donor information to parents both prospectively and once the child is born and they should inform parents of their and their children's rights to access information from the HFEA Register, including about donor-conceived siblings (Sections 11 and 20).

And yet some clinics appear to be failing to comply with such guidance, prompting patients' complaints. There seem to be three main concerns. First, worries about prospective parents selecting 'desirable characteristics' in donors – the so-called 'designer baby syndrome'. Second, concerns from donors reluctant to have their information disclosed so soon after they have donated. Third, anxieties that donors may be traced through their non-identifying details. We believe that a debate on these three separate but linked issues is long overdue.

We share concerns about any moves towards selection on the grounds of film star looks, high IQ (intelligence quotient) and so on. But at the same time, we can understand parents' desire to know more about the person whose DNA will contribute to their child's make up and about whom they will be sharing personalised information with their child.

Putting blanket bans in place is too crude: but how to determine what range of professional responses and skills might be needed to best meet the needs of the family-to-be while avoiding any collusion with those intent on 'designing' babies?

When the child is born, clinics' refusal to release donor information is, in our view, more difficult to understand. The spirit of the law is clear: professionals need to allow the control of donor information to shift towards the place it needs to be – the parents and, later, the offspring.

Turning next to the impact on donors, clinics are guided by the HFEA Code of Practice to tell donors of the circumstances in which information may be shared with parents and donor offspring (Section 11). It is good practice, and of benefit for all concerned, that donors are aware of the responsibilities and risks that come with contributing to the formation of a human life and family unit.

Some donors may feel uncomfortable with the idea that the information they have provided will be used as part of a 'selection' process, some may feel uncomfortable about it being passed to parents when their children are still infants. Staff charged with recruiting donors do not want to see them dropping out, especially late in the process.

However the construction and completion of donor information is potentially vital for donor families and the well-being of donor offspring and goes hand in hand with openness. It is better for parents to share facts and stories about 'their' donor rather than only being able to talk of 'a very nice man/ woman who helped us' and who was of a certain height, age and skin tone. That is what the 2008 Act envisaged and this is what research is starting to confirm (3, 4).

So how best to manage these different or competing needs? How might donors' anxieties be lowered? What types of support might help them complete their information in full? Should donors be excluded if they fail to do so? What is the extent of the clinic's duty of care to both the new family and the donor anxious to avoid early tracing because of having divulged potentially identifiable facts?

Finally, in this digital age, donors should be advised that their anonymity cannot be absolutely guaranteed before the offspring are adults. Discussions about the risks should form a core part of preparing donors. Some donors, of course, do not find the prospect of being approached of any concern, regardless of the age of the child. In Australia and New Zealand, it is increasingly common for professionals to facilitate information exchange or contact between 'stranger' donors and offspring during childhood, in response to children's needs (5).

For those prospective UK donors that fear the early loss of anonymity, however, addressing such fears early on with the help of professional support is arguably better than allowing them to go ahead without. It may also be helpful for donors to know that research suggests that donor offspring have little interest in establishing a parent-child relationship with their donor(s), even if they would welcome direct contact (6, 7).

The time is ripe for fuller discussion of these issues. There is uncertainty and lack of consensus among clinics, and patients are unclear about what they are entitled to expect. Should clinics be allowed to set their own practices? Or if there is to be consistency, can a consensus be achieved on what are the right principles to apply?

Given that these requirements are in its Code of Practice, eight years after guidance was first issued the HFEA cannot avoid demands for clarification about what it really intends to achieve and how seriously it takes such requirements. But before being pressed to pronounce, the HFEA can reasonably look to the sector, to interested professionals and academics and to directly affected individuals and organisations for help in finding a way forward. We stand ready to assist.

SOURCES & REFERENCES
1) HFEA Guidance CH(04)07
HFEA |  5 August 2004
2) HFEA Code of Practice
HFEA |  17 September 2019
3) Kirkman M. Parents’ contributions to the narrative identity of offspring of donor-assisted conception
Social Science & Medicine |  1 April 2003
4) Rodino IS, Burton PJ, and Sanders KA. Donor information considered important to donors, recipients and offspring: an Australian perspective
Reproductive Biomedicine Online |  22 November 2010
5) Crawshaw M. Donor Registers and donor linking services: What can the UK learn from Australia and New Zealand?
Journal of Fertility Counselling (2011) |  17 September 2019
6) Beeson D, Jennings P, Kramer W. Offspring searching for their sperm donors: how family type shapes the process
Human Reproduction |  26 June 2011
7) Scheib JE, Riordan M, Rubin S. Adolescents with open-identity sperm donors: reports from 12–17 year olds
Human Reproduction |  11 November 2004
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