By Charles Lister, NGDT Chair
On 3 November 2015, the National Gamete Donation Trust (NGDT) and the Progress Educational Trust (PET), supported by University College London (UCL) and the British Infertility Counselling Association (BICA), held an emotive and lively public event at the Institute of Child Health (ICH) to not only mark 10 years since the removal of donor anonymity in the UK but to discuss what the future may hold.
The panel comprised:
- Juliet Tizzard – Director of Strategy and Corporate Affairs at the Human Fertilisation and Embryology Authority (HFEA)
- Dr Joanna Rose – Donor-conceived person and Claimant in Rose and Another v Secretary of State for Health and Human Fertilisation and Embryology Authority, a case brought in 2002 which contributed to the decision to end donor anonymity
- Eric Blyth – Emeritus Professor of Social Work at the University of Huddersfield
- Venessa Smith – Donor recruitment manager at London Women’s Clinic
- Susan Golombok – Professor of Family Research and Director of the Centre for Family Research at the University of Cambridge.
The event was very well attended by donor-conceived adults, professionals working in the fertility sector, parents of donor-conceived offspring, donors, researchers, the media and others with an interest in the subject. In addition to looking at the historical context and how gamete and embryo donation has changed through the eras, a passionate debate ensued which highlighted the implications of parental non-disclosure of their children’s conception with the assistance of a donor.
The ending of donor anonymity in 2005 means that any child conceived after April 2005 through licensed donor conception in the UK can seek identifying information about their donor at the age of 18. However, those conceived before April 2005 can only obtain identifying information via the HFEA if their donor chooses to make themselves identifiable. And those conceived pre-1991 – before the Human Fertilisation and Embryology Act came into force and the creation of the industry’s regulatory body (HFEA) – only have access to information available through the Donor Conceived Register (DCR), a voluntary contact register for donors and the donor conceived managed by the NGDT.
It’s all very well supporting the identity release of donors, as the NGDT has always done, but if a donor-conceived individual doesn’t even know that they’re donor-conceived then, well, that’s just it, they don’t know. They don’t know their genetic heritage but they also don’t know that they don’t know and this sparked some stimulating discussion.
A fundamental question raised by the NGDT and PET event is whether more can and should be done – through better communication, persuasion, counselling or even changes in the law or practice in clinics – to set the balance more towards the needs of all donor-conceived children so that they are aware of their genetic origins. Essentially, by ensuring that parents are actually telling their children of their conception. There was further debate as to whether someone else or some other mechanism should be put in place that tells the child of their donor conception. By organising and hosting the event, the NGDT has been able to highlight to others in the sector that in order to move forwards it’s imperative that this subject is addressed as a matter of importance.
At present, whether a child knows they are donor conceived depends on the choices made by parents, and would-be parents. Many parents choose to tell, and there is excellent information available from the HFEA and the Donor Conception Network (DCN) as well as counselling in clinics, to support them in telling.
- some patients travel abroad for treatment and children are conceived through donations in countries which still have donor anonymity
- some children are conceived through informal arrangements that are completely unregulated
- some children are still not being told by their parents that they are donor conceived
- many children conceived using licenced UK clinics before 2005, have no formal access to information.
It was clear on the night, that the panel and audience held exceptionally strong and differing views on the issues raised, and this itself demonstrates that the fertility industry as a whole needs to take action to ensure that the rights of donor-conceived offspring are at the forefront of gamete donation treatment policy and decision-making. And that more, much, much more, needs to be done to achieve this.
The NGDT takes the issue exceptionally seriously and we moved quickly to take steps to progress the matter. Within 24 hours of the event our Advisory Council met to discuss what can and should be done to encourage parental telling and talking. At present, we are the only organisation in the fertility sector that is bringing together representatives from:
• British Infertility Counselling Association
• Donor Conceived Register Registrants’ Panel
• Human Fertilisation & Embryology Authority
• Department of Health
• Infertility Network UK
• PROGAR (Project Group on Assisted Reproduction)
• Multiple Births Foundation
• Progress Educational Trust
• British Andrology Society
• Centre for Family Research, University of Cambridge
• British Fertility Society
• Donor Conception Network
• Royal College of Nursing
• King’s College DNA Analysis.
As a cohesive whole we discussed many of the issues raised by the NGDT and PET event. While we didn’t reach a consensus, what was evident is that the fertility sector needs to take further responsibility for ensuring that we foster an environment where parental telling and talking becomes the norm. All donor-conceived children need to know of the circumstances of their conception and have access to information about their gamete and embryo donors. How that is best achieved will require further discussion and consultation, drawing together representatives from across the industry and listening to the voices of donor-conceived adults, donors and recipients.
Undoubtedly there will be more significant and lively debate to come. That is, after all, the basis of how meaningful change comes about. The NGDT is not shy. We will continue to be a driving force for change and tackle the issues that need to be challenged.
Watch this space!