23andMe bankruptcy: Potential data risks for the donor-conceived community

The DNA testing site 23andMe announced on 24 March 2025 that it had filed for bankruptcy (see BioNews 1283). Since this announcement, concerns have been raised about the privacy of the data – including DNA data – held by the company. These kinds of concerns about this company are not new; in 2023, hackers accessed the data of almost seven million 23andMe users (see BioNews 1211).

However, this latest development raises new questions about what will happen to users' data once the company is sold. These questions and concerns are well-founded. At time of writing (27 March 2025), their Privacy Statement included the following clause regarding data sharing:

'If we are involved in a bankruptcy, merger, acquisition, reorganisation, or sale of assets, your Personal Information may be accessed, sold or transferred as part of that transaction and this Privacy Statement will apply to your Personal Information as transferred to the new entity. We may also disclose Personal Information about you to our corporate affiliates to help operate our services and our affiliates' services.'

This raises questions and potential concerns for all users of 23andMe, and of other direct-to-consumer genetic testing sites, about who will have access to their information, and how it will be used.

However, this article focuses on one particular group of users – donor-conceived people, parents through donor conception and gamete donors. We argue that this latest episode in the 23andMe saga illustrates that the current regulatory status quo pertaining to donor anonymity in the UK renders members of the donor-conceived community particularly vulnerable to harms associated with the (mis)use of their DNA data.

To understand the particular relevance of direct-to-consumer genetic testing to donor-conceived people, parents of donor-conceived people and gamete donors, it is necessary to understand not only the culture of secrecy around donor conception but also the continued (albeit partial) legislative support for anonymity.

Prior to 2005, all gamete donations were made on the condition of anonymity in the UK. All donations made from 2005 onwards were made on the condition of non-anonymity, with the establishment of an identity release system that allows donor-conceived people to access identifying information about the donor once they turn 18.

Since 2008, they have also been able to access information about same-donor siblings at this age if both parties consent to it. People who donated between 1991 and 2005 can also opt to make themselves identifiable, though they are not required to do so. Prior to 1991 there was no central register and donor records were routinely destroyed.

This renders the landscape regarding access to information about donors both complex and inconsistent, with donor-conceived people's access to information about their donor varying depending upon when they were conceived.

For many born of pre-2005 donations, and all conceived from donations made prior to 1991, the only 'formal' route to donor identification is by registering with the voluntary Donor Conceived Register, which is run by Liverpool Women's Hospital and which uses DNA testing to match donors, offspring and any donor-conceived siblings. However, the rise of direct-to-consumer genetic testing sites, which have 'relative matching' features in combination with social media, has provided an informal route through which people can seek information about their donor-relatives.

Even for those who are conceived after anonymous donation was removed, direct-to-consumer genetic testing can be considered an important tool for circumventing the restrictive regulatory 'identity-release' age limits. Some donor-conceived people, and/or the parents of a child born through gamete donation feel that establishing connections with either donors or same-donor siblings before the age of 18 is important.

We see this reflected by Imogen, the parent of a young donor-conceived child who was interviewed as part of the ConnecteDNA project:

'the kind of more I read personal stories or listen to blogs, the more I feel like it's my duty really to ger her DNA tested or to try and somehow reach out and find the donor'.

Imogen also reflects on enabling her daughter to build relationships with her same-donor siblings from a young age:

'if you're trying to create a relationship with somebody who's so potentially important to you, that could be a really difficult relationship to build when you're eighteen. Whereas if I build that for her when she's younger, then it will be a much more natural kind of a relationship.'

The findings from the ConnecteDNA project have also indicated that some donors feel it is important, or even their 'duty' to make themselves 'findable' to people conceived through their donations – by uploading their data to websites such as 23andMe. The impetus to do so may be particularly strong if they have found out about particular genetic conditions that they did not know about at the time of donation. Jim, for example, describes signing up to Ancestry (another direct-to-consumer genetic testing site) in order to try and 'warn' children born from his donation to get tested for a serious genetic condition that he discovered after having a child with his partner.

In the absence of appropriate formal routes for accessing information about donors, at a time that feels appropriate for the donor-conceived person and their families, the donor-conceived community is 'pushed' towards use these private commercial sites – even if this would not be their first choice. Thus, the current regulatory status quo creates a situation in which the donor conception community are rendered particularly vulnerable to data harms perpetuated by the actions of private commercial entities such as DNA testing companies.

The bankruptcy and uncertain future of 23andMe, and the data that is held by the company, further demonstrate the vulnerable position that donor-conceived people, and gamete donors, are placed in as a result of current and past legal systems. In doing so, it adds strength to calls for the approach to donor anonymity/identity release to be carefully re-examined in light of the new technological reality created by direct-to-consumer genetic testing.