Blog16th November 2023
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.