It’s been a busy week in politics, but below headline news of personnel change at the heart of government, another story broke which will be of great personal and professional interest to many in the UK and beyond. The Department of Health and Social Care has received a set of recommendations from the Human Fertilisation and Embryology Authority (HFEA) for changes to the HFE Act, which governs fertility treatments and embryo research in the UK.
The proposals would not amount to a wholesale reform of the Act, but nevertheless raise both practical and ethical questions. Amongst the proposals, is an amendment that would enable the removal of anonymity for sperm or egg donors, from birth, of any child born from donation.
Under the current law, a register of donor conception procedures is kept by the HFEA, and children born from the use of donor gametes in licensed clinics can apply for information about their donor’s identity when they turn 18. This law came into force in 2005, and the first cohort of donor-conceived children are reaching that milestone this year. Those conceived before 2005 do not have access to this information unless the donor chooses to make themself identifiable. Before 1991 - when statutory regulation of fertility treatment came into place - no information was kept centrally and only very limited information about donors has been kept on record, if any at all. The HFEA funds the Donor Conceived Register which aims to use DNA testing to match donor-conceived children born before 1991 with donors and donor siblings who have joined the register voluntarily.
In an appearance on Radio 4’s Today programme this week, Peter Thompson, Chief Executive of the HFEA, explained the intention of the proposed change is that parents of donor-conceived children should be able to apply to the HFEA shortly after the birth of their child, or anytime from that point, for identifiable information about the donor.
Shifting this decision to seek information from adult donor-conceived people to now their parents, at a much earlier stage, raises significant questions, such as how the interests and wishes of the different parties should be weighed up. For example, at what age and how might the HFEA expect to see the child being involved in the decision to seek this information? What if there is disagreement within the family?
However, as the HFEA has indicated, these dilemmas could already be playing out in practice. Our report, Donor conception: ethical aspects of information sharing, was published ten years ago, but foresaw the potential of technological and social developments - in particular the research capabilities provided by the internet, genetic testing, and the use of social networking - to enable people to obtain information about donors, donor offspring and donor-conceived siblings outside regulated channels. The full extent of this happening is not known, but it has been argued that the possibility of it means that donor anonymity cannot be guaranteed. In the words of HFEA Chair Julia Chain, “the current system, where identifiable information about a donor is disclosed to the donor-conceived person at 18 and only upon request, can no longer effectively keep up.”
Our report acknowledged that the role of the HFEA as the ‘gatekeeper’ of identifiable information about donors may be forced to evolve in recognition of the extent to which such information may be obtainable in other ways. However, a core principle that should not be subject to change is this: in enabling and endorsing donor conception as a way to create a family, the state has a responsibility to take action to promote the welfare of those affected by donor conception. The way that it does this will need to rest on careful consideration of the implications of families being able to access information and potentially contact donors earlier in life.
Thank you for these developments. For donor conceived person who turns 18, I agree with the suggestion that this process must be discussed and agreed up on earlier in life of the person. This will provide ample time to internalize the consequences of knowing the real biological parents, and how the family will take it and the adolescent person. This has to be handled carefully.
This is a complex multi-faceted area, but it is not the only aspect - When enabling and endorsing donor conception as a way to create a family, the state has a responsibility to take action to promote the welfare of those affected by donor conception, but in effect does little. As a Consultant Clinical Psychologist & Systemic Family Therapist who has worked in this field [research and clinical practice, developing and leading workshops for children and young people], the level of awareness of the challenges for families - and those of donors and surrogates in both short and long term are well known to me. Complexities and dilemmas affect many at one point or another.
I have been trying for more than 20 years and have had previous failed attempts to establish a service and training provider.
The Centre for Individual and Family Identity [CIFI] is a recently established Clinical Psychology led specialist provider of therapeutic services informed by Systemic Family Therapy approaches which offers consultations by experienced clinicians to Donor Conceived families, Donors, Surrogates, and their families. It will also encompass providing groups & workshops for families who have chosen to be open about the origins of their offspring . Additionally, it will provide training for a variety of professionals to increase awareness, understanding and sensitivity towards all those involved in building families in this way, whether in health settings, schools, Social Care or third sector. It has been set up as a non-profit organisation. It has no support as yet from Government or elsewhere.
I struggle to see how this indicates that much is thought about regarding the welfare of those affected in the multiple connected systems by donor conception. The OTR and Donor Conceived Register are two aspects which get some funding, but many people need far more than either can offer.
In my view there are wider issues to be grabbled with as part of a review of the legislation.
I have been deeply uncomfortable about the elements of retrospective change to laws and regulations that have marked developments in respect of donor anonymity.. The whole focus has been on the demands of those born from donation for more transparency with limited attention to the potential wishes and risks for donors, who gave material on a basis of anonymity that has been gradually chipped away. I think there needs to be a better balance in the policy debate - the fact that offspring may be able to discover donors by roundabout means does not seem to me to be a good basis for such a radical change.