Donor identifiability from birth:

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 Findings of the Young Adults Study
by Dr Sophie Zadeh

In November 2023, the Human Fertilisation and Embryology Authority (HFEA) published a report and recommendations from its consultation (see BioNews 1185) on the main UK law governing fertility treatment and embryo research (the Human Fertilisation and Embryology Acts 1990 and 2008) (see BioNews 1216a and 1216b).

The scope of the consultation included the issue of access to donor information, and within that, the proposal that the Act be amended to incorporate a two-track system, offering 'parental and donor choice to opt for anonymity until age 18 (as now) or identifiable information on request after the birth of a child'. The HFEA's recommendation, post-consultation, is that all donors in the UK be identifiable to parents from the birth of their child.

The HFEA received 6803 responses to the consultation, and of the 955 patient and professional/patient respondents, eight percent – or 76 people – were donor-conceived adults. Responses to the specific question about the 'two-track' system among those who are donor conceived were as follows: 47 percent agree; 33 percent disagree, and 20 percent were unsure or had no response. No further detail about these responses was provided. However, the figures suggest that more information is required to understand donor-conceived people's perspectives on this issue.

In 2020, we began the Young Adults Study, a UK-based, multi-method, psychological research study conducted by researchers at the University of Sussex. The study focuses on the lived experiences and wellbeing of donor-conceived people, with a focus on young adults aged between 18-32 years.

As part of this research, we have been responsive to contemporary issues in donor-assisted conception, including for example, commercial DNA testing, and, more recently, the HFEA consultation. We conducted in-depth interviews with 33 young adults conceived through anonymous sperm donation, and a nationwide survey that included responses from 88 donor-conceived people (of whom 41 were young adults). Our focus groups, conducted with 20 donor-conceived young adults between November and December 2023, sought to understand in greater depth perspectives on policy and practice among this cohort.

We asked focus group participants about the proposed two-track system for donor identifiability. Most participants were in fact supportive of maintaining the current legislation – of donor identifiability at age 18. The two-track system was dismissed on grounds that it would deepen existing inequalities among different groups of donor-conceived people, and afford too much choice to future parents (rather than their children).

The participants in the Young Adults Study also described the current legislation as age-appropriate, with arguments against earlier identification including that donor-conceived individuals are, by age 18, sufficiently mature to process donor-identifying information; that the role of a donor does not include involvement in family life; and that such a change in law would mean that donor information no longer belonged to a child, nor would it be at the discretion of adult children to access. Regarding the latter point, it is noteworthy that the HFEA has considered Gillick competency and it will be interesting to see how discussions on this point proceed.

While few participants advocated donor identifiability from birth, those who did suggested that for individuals who are very interested in donor-identifying information, 18 years is a long time to wait; that this progressive proposal could reflect a paradigm shift towards a relational model (much in the way that other historical trends, such as non-disclosure, are now understood to be unethical); that it would simply bring law in line with practice (given uses of commercial DNA testing); that it might encourage more parents to disclose their use of donor gametes to their donor-conceived children; and that it might overcome some of the issues with identifiable-from-18 legislation, such as those relating to insufficient medical information and out-of-date contact information.

More generally, participants in both our individual and focus group interviews were supportive of the 2005 legislation, regardless of whether they were interested in accessing information about the donor themselves. Some participants suggested that the release of information at age 16 would be more appropriate. A minority advocated for the retrospective removal of anonymity, and a minority advocated for the reinstatement of the possibility of entirely anonymous donation.

Given this breadth of perspectives, it is perhaps difficult to make policy recommendations that could be said to 'generally reflect' the views of those who are donor conceived. However, there were areas of clear consensus among the participants in the Young Adults Study: about the desire for greater access to medical information, and for parental disclosure of donor conception to children at an early age. These research findings echo some of what has been found in previous studies conducted in the UK and elsewhere.

It is therefore disappointing that the scope of the HFEA's consultation did not allow for substantive engagement with either of these issues (although notably, the matter of medical information was raised by a patient in their response to the consultation):

'We are also concerned that the state holds data that is fundamental to the health of donor adults but does not forward that information to the NHS and to donor-conceived adults' healthcare workers. This means that the state is not properly informing GPs and other medical practitioners of the health circumstances of donor-conceived adults and thus hindering their ability to effectively advise on health issues.' [Patient]

Given that the HFEA has stated that its proposals for identifiability from birth are subject to further consideration of various points, including the 'continued respect of donor anonymity for pre-2005 donors and no retrospective early removal of anonymity for post-2005 donors', it is hoped that these matters will be discussed in the near future as the recommendations take further shape.

Finally, it is worth acknowledging that the participants in our study, who were primarily recruited to the research via the social media channels of Donor Conception Network and Donor Conceived UK, had very little knowledge of the HFEA overall. Several participants simply stated that they did not know what the HFEA is, and these individuals are highly unlikely to have responded to the consultation. Moreover, it remains the case that an indeterminate number of people do not know that they are donor conceived. These individuals are clearly also unlikely to share their views, either with the HFEA, or with academic researchers.

PET (the Progress Educational Trust) has exclusivity on the findings from the Young Adults Study, which are currently being prepared for academic publication.