The Human Fertilisation and Embryology Authority (HFEA) has recently sought views about reforming the law on fertility treatment regulation and embryo research. They identified a number of issues with the current legal framework, around which the public consultation was structured. In this article, Dr Caroline Redhead and Dr Lucy Frith examine one such issue, the challenge to donor anonymity caused by the availability of direct-to-consumer genetic testing (DTCGT). The concern, outlined below, is that DTCGT makes it possible to circumvent the current regulatory system, designed to protect the anonymity of gamete (egg, sperm and embryo) donors until donor-conceived people reach the age of 18.
- Direct to consumer genetic testing challenges donors’ anonymity because people can combine the results of an online DNA test, the relative ‘matching’ services offered by many providers, and the significant amounts of personal information available on social media platforms to search for, and possibly (although not always) identify genetic relatives.
- The HFEA has suggested that clinics should be legally required to inform donors and prospective parents about the potential for the donor’s identity to be discovered through DTCGT websites.
- We recommend that policymakers should bear in mind that further cultural and technological change is likely and any reform of the Human Fertilisation and Embryology Act (HFE Act) should consider developing technologies more broadly.
The ConnecteDNA project
The ongoing ConnecteDNA research project is examining the use of DTCGT by, and its impact on, gamete donor (egg, sperm and embryo) conceived adults, donors and parents (and relatives) of donor conceived people. There has, until recently, been very limited empirical research with people affected by donor conception to examine how they understand and experience the implications of this technological development.
Our recommendations draw on our preliminary analysis of data gathered from qualitative interviews and stakeholder workshops. We are also carrying out interviews with regulators. To date we have spoken to regulators in the Netherlands and Victoria, Australia. Our research is ongoing.
Background – Human Fertilisation and Embryology legislation
When the Human Fertilisation and Embryology Act 1990 was first enacted it reflected a general presumption that gamete donation should be anonymous. This changed in 2005, when the Act was updated to provide that donors would remain anonymous only until any children resulting from their donation became adults. The Act designates the HFEA Register as the central repository for donor information and as the single access point to it.
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 from the HFEA.
However, easy and relatively affordable access to direct-to-consumer genetic testing and relative ‘matching’ services, in combination with information available on social media platforms, means that donors and donor-conceived people may be able to identify each other outside the regulated system, whether this information is sought intentionally or is discovered unexpectedly. This can happen even if the donor-conceived person is not on any social media platforms and has not used DTCGT.
Our research suggests that donor-conceived people’s views, experiences and circumstances are varied and change over time. Parents (even when they have had good implications counselling) can only fully understand the implications for their children having (or not having) information about their donor or donor siblings, once that child exists and starts to express views and develop needs and interests.
Our preliminary findings show that the potential identifiability of donors is just one of a number of significant implications of DTCGT, about which donors and parents by donor conception should be informed. These include:
- the possibility that donor-conceived individuals will inadvertently discover they are donor conceived;
- the possibility that donor siblings will inadvertently be identified (including a donor’s own children);
- the fact that DTCGT enables genetic connections to be identified without explanation, meaning that connections may be misinterpreted as e.g. evidence of possibly extra-marital sexual relationships;
- the unanticipated challenges often encountered as a result of DTCGT, such as, for example, becoming responsible for gatekeeping knowledge of others’ donor conception;
- DTCGT does not enable everyone affected by donor conception to identify genetic relatives, causing distress in some cases where connections are not able to be found via DTCGT sites.
Our recommendations respond to the proposal in the HFEA’s consultation that clinics should be legally required to inform donors and recipients of the potential for donor identity to be discovered through DTCGT websites.
The consent process for prospective donors should ensure their full understanding of the potential challenges to anonymity from developing technologies, including genetic testing. In addition, prospective donors and intended parents should be informed about the wider implications of DTCGT identified by our research. Particular efforts are required to inform harder-to-reach groups, such as historical donors and their families, and parents of adult donor-conceived children who have not shared the circumstances of their child’s conception.
Making specific reference to DTCGT in primary legislation would not ‘future-proof’ the Act. Other emerging technologies, such as facial kinship verification technologies, are likely to have similar impacts (and may have further implications which are as yet unclear). Legal loopholes might quickly be created in the event that DTCGT were the only technology referenced in the Act. Reference to specific technologies might best be contained in Guidance/the HFEA Code of Practice, rather than in primary legislation.
In considering reform of the Act, policy-makers should bear in mind that further cultural and technological change in this area is likely. Given the long-term nature of donor conception and gamete/embryo donation, we recommend that legislative change should facilitate regulatory systems in which those involved (particularly donors and parents) can be contacted in the longer-term. This is to ensure they remain fully informed about the ongoing implications of their decisions and any options they (and/or their children or wider families) may have in relation to them.
To this end, we recommend that an additional power be granted to the HFEA to notify a donor of any changes or implications where it considers such notification appropriate, and that the possibility, and potential scope) of such power be discussed as part of the consent process. The amendments to the Act by Schedule 17 of the Health and Care Act 2022 (permitting fertility patients to store both embryos and gametes for up to 55 years) are an example of how such a power might be exercised.
Finally, we stress that DTCGT is not (and must not be presented as) a substitute for accurate and accessible official systems, such as the HFEA Register, for information and connection.