Direct-to-consumer genetic testing (DTCGT) from companies such as Ancestry and 23andMe has significantly impacted the dialogue around gamete (sperm and egg) donor conception. In the UK where the anonymity of donors is theoretically protected until a donor-conceived person turns 18, the growing use of DTCGT has prompted the regulator of reproductive technologies, the Human Fertilisation & Embryology Authority (HFEA), to reconsider the law in this area. In this article, Dr Caroline Redhead and Dr Lucy Frith argue that the new proposals would cause increased inconsistency and unfairness between different cohorts of donor conceived people.
- In November 2023 the HFEA released its report on law reform. They proposed amending the law to enable to removal of donor anonymity from the birth of a donor-conceived child.
- The HFEA has not recommended a retrospective change in the law. This means that donor-conceived people born from donations made before 1 April 2005 will still have no legal route to access identifying information about their donor.
- Donor-conceived people in the UK have significantly different rights to information about their gamete donor depending on the date of their conception. The current proposals would increase this inconsistency.
Background, anonymity and inconsistency
DNA was first discovered in 1869 but the full human genome was not sequenced until 2023. It took 13 years to sequence the human genome for the first time – but that can now be done in a single day! You can test your own DNA for around £100, or 20% less if you bought your test in the ‘black Friday’ Christmas sale.
In the 1980s, when legislation on donor anonymity was being discussed, it was considered that anonymity would encourage donation, and protect donors and recipient couples from legal complications and emotional difficulties. Donors remained anonymous until 2005, but elements of anonymity (such as prohibiting access to information during childhood) remain a feature of the regulation of donor conception in the UK, as well as in many other jurisdictions.
Currently, only donor-conceived people born from donations made from 1 April 2005 onwards have a right to apply for identifying information about their donor. Assuming they know they are donor-conceived, people can apply for non-identifying information about their donor at 16 and identifying information at 18. Whilst donor-conceived people born before 31 March, 2005 have no legal route to access identifying information about their donor.
Anyone who donated between August 1991 and March, 2005 can opt to make themselves identifiable. If their donor has done this, people born from their donation can request information about them from the HFEA. However, many donor-conceived people are unaware of the circumstances of their conception, and many donors don’t know there is an option to remove their anonymity. The use of DTCGT and the ‘relative matching’ services offered by many providers, in combination with social media, offers donor-conceived people a way to circumvent the UK legal system and the HFEA access criteria, and search directly for their donor.
For donor-conceived people born before August 1991, there are two options to look for information about their donor. They can register with the voluntary Donor Conceived Register, a bespoke DNA database which looks for possible genetic matches between people who have signed up, or they can opt to use commercial DTCGT.
HFEA report outcomes
The HFEA has concluded that the integrity of the current legislative framework has been undermined by the impact of DTCGT. It has therefore proposed that the law should be amended to make gamete donors identifiable from the birth of any child born from their donation.
The HFEA has not recommended a retrospective change in the law. This means that people born from donations made before 1 April 2005 will still have no legal route to access identifying information about their donor.
Donor anonymity and access to information: findings from the ConnecteDNA research
Our ConnecteDNA project at The University of Manchester examines the use of DTCGT by gamete donor-conceived adults, donors and parents of donor-conceived people.
We have found that the rise of DTCGT has led to growing numbers of people discovering they are donor conceived via late and/or shock discoveries – often by doing a DNA test for fun. Such events can sometimes be associated with psychological distress and significant, lasting disruption to family relationships.
DTCGT has a number of further implications for donor anonymity, which we highlight in our previous article.
The HFEA’s law reform proposal has focused on information about the donor. The ConnecteDNA study has found that connections with donor siblings can be equally or more important to donor-conceived people. The desire to connect with same-donor families and siblings during a donor-conceived person’s childhood is a key driver for the use of DTCGT by parents of donor-conceived children.
The HFEA’s Donor Sibling Link service (DSL) allows donor siblings to exchange contact details from the age of 18, by mutual consent. Noting the importance to our participants of connections with donor siblings, we recommend that the Government consider reducing the age of access to the DSL.
Donor-conceived people have significantly different rights to information about their donor depending on the date of their conception in the UK. The HFEA’s proposal for reform would create a new cohort with further rights. This would increase the inconsistency and arguably unfairness.
The HFEA’s Legislative Reform Advisory Group proposed considering the retrospective application of removing donor anonymity. This approach was taken in Victoria, Australia, where a reformed law in 2017 granted all donor-conceived individuals the right to access identifying information about their donor, irrespective of when they were conceived. If the UK were to adopt a similar approach, addressing the practical implications for individuals conceived before the HFEA register’s establishment would be necessary.
We recommend that a Law Commission project is established to explore how best to manage donor information in the UK, balancing the interests of donors, parents by donor conception and donor-conceived people, whatever the date of their conception. The UK Government should consider any findings and recommendations from this when reviewing further legislation or reform.
|27 Nov 2023
Title Reforming UK fertility legislation: the effects of online DNA testing Media name/outlet Policy@manchester Country/Territory United Kingdom Date 27/11/23 URL https://blog.policy.manchester.ac.uk/posts/2023/11/reforming-uk-fertility-legislation-the-effects-of-online-dna-testing/ Persons Lucy Frith, Caroline Redhead
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