DNA testing and donor conception: New leaflets to support informed choices

Previously, my colleagues and I from the ConnecteDNA project have written commentaries for BioNews about the ways in which direct-to-consumer genetic testing has reshaped the landscape of donor conception (see BioNews 1149, 1185 and 1285).

Companies such as Ancestry, 23andMe and MyHeritage DNA now host databases of tens of millions of people, and it has become straightforward – and relatively inexpensive – for donors, donor-conceived people and their families to find one another outside the regulated route of accessing the register held by the Human Fertilisation and Embryology Authority (HFEA). This is now an established feature of the donor conception landscape, and people may be identified even if they have not taken a test or do not wish to be.

Over the course of the ConnecteDNA project, we interviewed donors, donor-conceived people, parents through donor conception and members of their wider families about how online DNA testing is affecting their lives. We also ran workshops with clinicians, policy-makers and support organisations, and reviewed the information provided by the DNA testing companies.

One message came through very clearly: people want better information, written specifically for those involved in and affected by donor conception, about what online DNA testing involves and the emotional, relational and practical implications of taking a DNA test.

We are therefore pleased to announce the publication of four new information leaflets, freely available via the ConnecteDNA project website. There are separate leaflets for donor-conceived people, donors, and parents (or prospective parents) through donor conception, each structured as a question-and-answer guide, alongside a leaflet presenting a series of short, anonymised case studies drawn from our research.

The leaflets address questions we heard repeatedly during the project. What is online DNA testing, and how do the different providers compare? What kinds of information can people realistically expect to receive, and how reliable are the predicted relationships? What are the data privacy implications of providing a saliva sample to a commercial company, and what, if anything, can be done if someone later wants their data removed? Where can people turn for help in making sense of results, or for support in processing what can be a life-changing discovery?

Each leaflet is tailored to the particular circumstances of its audience. For donor-conceived people, we address the experience of discovering donor conception through an unexpected DNA match – something a growing number of people are experiencing – and we discuss the range of feelings and practical questions that this can raise.

For donors, we address the increasing likelihood of being identified, including by people born from donations made on an anonymous basis and via relatives who have themselves taken a test, and we explore what to do if someone makes contact.

For parents, we set out the issues that parents in our research told us they had wrestled with, such as the difficult question of whether to test a child and, if so, at what age, recognising that there is no single right answer.

The case studies leaflet complements these guides by offering concrete examples of how DNA testing can play out in practice. The stories include donor-conceived people who grew up knowing about their origins and used DNA testing out of curiosity; people who discovered they were donor-conceived through an unexpected DNA test result; donors who have been traced decades after donating; and parents navigating complex family dynamics.

Some of these journeys have been positive and affirming, others painful or unresolved, and many are still ongoing. Taken together, they make clear that there is no single script for what happens when people use online DNA testing in the context of donor conception, and that often the experience can be very emotionally demanding.

A consistent finding across the research – and a consistent theme across the leaflets – is that DNA testing creates implications not only for the person who takes the test, but also for a much wider network of relatives who may never have chosen to test themselves. Donor-conceived people can find themselves having to tell half-siblings, or more distant relatives, things those people did not previously know about their own origins. In this way, people can unexpectedly find themselves 'gatekeepers' of information about another family.

Donors, meanwhile, can be identified via cousins or other relatives who have tested for entirely unrelated reasons. The leaflets encourage everyone to think carefully about these ripple effects before testing and to consider what support they may want to have in place – whether from peer networks such as Donor Conceived UK and the Donor Conception Network, or from counselling services – before, during and after the process.

The leaflets are not intended to tell people whether or not to test. That is not a decision others should make, and our research showed that people reach very different conclusions about what is right for them and their families. Rather, our aim has been to explain, in clear and accessible language, what taking a DNA test might entail, so that decisions can be made on a more informed basis. We hope the leaflets will be a valuable resource both for members of the donor conception community and for fertility professionals and counsellors.

We are very grateful to those who co-produced the leaflets with us, including Donor Conceived UK, the Donor Conception Network, Debbie Kennett, Dr Marilyn Crawshaw and Dr Julia Feast, and to the many people who generously shared their experiences with us.

Alongside the DNA testing leaflets, the project website also hosts our earlier Preparing for Contact materials for donors and their families, and further outputs are planned.

The leaflets are available here, and are also hosted on the websites of the HFEA, the British Fertility Society and the Association of Reproductive and Clinical Scientists.

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Professor Lucy Frith will be speaking at next month's free-to-attend online PET event Donor Conception and Genetic Disease: Lessons to Be Learned from Donor 7069, taking place on Wednesday 24 June 2026.

Find out more and register here.