When the Human Fertilisation and Embryology (HFE) Act 1990 was first enacted it reflected a general presumption that gamete donation should be anonymous. This approach changed in 2005, when the HFE Act was updated to provide that donors would remain anonymous only until any children resulting from their donation became adults. The first cohort of children conceived under the new law will turn 18 from April this year, when they will be able to request their donor's identifying information using the HFEA's Opening the Register service.
However, direct-to-consumer genetic testing now allows easy and relatively affordable access to online DNA tests and relative 'matching' services. This means that, in combination with information available on social media platforms, donor-conceived people may be able to identify their donor outside the regulated system. As part of the ConnecteDNA project (led from the University of Manchester by Dr Lucy Frith) we have reviewed the (legal and other) information on direct-to-consumer genetic testing providers' websites, carried out interviews and held stakeholder workshops with donors, donor-conceived people, and their relatives to explore the implications of genetic testing. Clinicians, academics and policy-makers also participated in our workshops, and we have interviewed regulators in other jurisdictions where the law has been changed to remove donor anonymity.
In three stakeholder workshops, we explored whether (and how) participants thought the UK law around donor anonymity should be changed. These workshops took place in London, Manchester and Birmingham in November 2022 and January 2023. An open invitation was issued to stakeholder communities, and 40 people participated. As a starting point, we used the Human Fertilisation and Embryology Authority (HFEA)'s donor anonymity discussion document, to discuss the following options:
- Status quo plus: all donors remain anonymous until the child is 18 (the consent process covering the possibility of identification by direct-to-consumer genetic testing);
- Early identification by consent – from the outset or at any point before a child turns 18;
- Removing anonymity completely (prospectively), with increased emotional support for all; and
- A double track system – donors choose between being identifiable when the child is 18 and being identifiable from the outset.
Workshop attendees mostly agreed with interview participants' views that children have a right to be told they are donor conceived and that telling them younger is generally better. The general view among workshop attendees was that, going forward, 'removal of anonymity is the most considerate action for the donor-conceived child.' A small minority of workshop participants argued for changing the law so that information would be available to donor-conceived people, even where donors had been promised anonymity under the pre-2005 legislation, noting that wanting to know a donor's identity did not necessarily mean wanting contact. However, interview participants expressed more varied opinions about whether donor anonymity needed to be removed completely (or even at all).
There was also discussion in the workshops about changing the birth certification rules to make the fact of donor conception discoverable, with some donor-conceived participants suggesting that 'maintaining "secrecy" [about donor conception] perpetuates the "shame" element' and that 'secrecy poisons relationships'. Overall, participants in the stakeholder workshops felt that 'normalising all paths to parenthood, this is what needs changing'.
The HFEA's consultation document asks a narrower question in relation to donor anonymity, seeking views only on whether:
The Act should be amended to provide parental and donor choice to opt for anonymity until age 18 (as now) or identifiable information on request after the birth of a child.
Under this scenario donors donating at a regulated clinic would have to decide between remaining anonymous until any resulting donor-conceived persons turned 18, noting that this would only apply to the regulated system, or being identifiable to parents after the birth of a child. Parents would have to decide their preferred option at the point of treatment. This equates to the 'double track' system described in the HFEA discussion document.
Our workshop participants' views about the 'double track' option varied. Some liked the choice it would offer to parents and to donors, but others argued that, the very fact of offering a choice, would 'still [take] away the rights of the child' and, in not abolishing anonymity completely, fail to achieve an 'ideal minimum standard.' Some thought that, despite allowing flexibility, a variety of options might also cause confusion. Other attendees argued that, with the availability of online genetic testing which often allows genetic relatives to be identified, anonymity was no longer able to be protected, so the 'double track' option 'would not be practical'. It is also the case that these options only apply to donors operating within the regulated system.
Separately, our interviews with regulators in the Netherlands touched on the 'dual track' system that was in place there until anonymity was abolished in 2004. They told us that some Dutch donors who had agreed to be identifiable under the 'dual track' system had subsequently refused to allow their information to be shared, and that a legal loophole had prevented disclosure of their identity. As a result, legislation is currently being considered in the Netherlands to allow disclosure of a donor's identifying information without consent where that donor had donated as an identity release donor in the pre-2004 'dual track' system.
Thinking about the challenges experienced in the Netherlands, it is important to note, in response to the HFEA's proposal of a 'dual track' system in the UK, that:
- In the context of online genetic testing, care should be taken to counsel donors about the implications and limitations of their decisions around identifiability; and
- donors should not be allowed to withdraw consent to be identifiable once given.
The HFEA consultation is an opportunity for people to have their say on reform of the Act to reflect changing views on medical assisted conception, specifically gamete donation. However, the consultation questions stop short of suggesting full prospective removal of donor anonymity.
The perceptions and experiences of participants in our research to date suggest that there is a range of opinions among donors and the donor-conceived community about law reform in this area. There are advocates for complete removal of anonymity and supporters of the flexibility offered by the proposed 'dual track' system. There is general agreement, however, that the Act must somehow attend to the power of direct-to-consumer genetic testing to radically impact families formed by donor conception. While all the potential options for removing donor anonymity may not be mentioned in the consultation – it is to be welcomed that how information about the donor is provided to donor-conceived people is being considered.
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