How people can circumvent donor anonymity laws with at-home DNA testing kits – and why they do it

The availability of at-home DNA testing means that virtually anyone can request a test kit and learn about their family history, genetic ancestry and medical information. However, some people receive more information than they bargained for.

According to some reports, online DNA testing has revealed secret fathers, incest, and donor conception (eggs, sperm, and embryos), all of which can be emotional and disturbing discoveries.

Our ongoing research examines how the increased availability of online DNA testing affects adults conceived through sperm donation, their parents and the donors themselves.

We have found that the combination of secrecy surrounding sperm donation, continued (albeit partial) legal support for anonymity and the rise of online DNA testing has resulted in increasing numbers of people learning late or with shock that they were conceived through sperm donation.

The UK's Human Fertilisation and Embryology Act 1990 came into force in 1991. At the time, the assumption was that donation should be anonymous. Although attitudes have changed, the law still requires donors to remain anonymous until the children born from their donation are adults.

However, the law only regulates the release of information by the fertility regulator, the Human Fertility and Embryology Authority (HFEA). Online DNA testing is a service marketed directly to consumers and is outside the remit of the HFEA. It offers people the opportunity to bypass donor anonymity and search for information about genetic relatives.

In 2023, the HFEA consulted on modernising UK fertility law, recognising the disruptive impact of online DNA testing. As it is beneficial for children to know at a young age that they were conceived through sperm donation, the HFEA proposed changing the law so that donor anonymity is removed at the birth of a child conceived through sperm donation, rather than at age 18 (as is currently the case).

This proposal would be a significant change and the HFEA has indicated that a phased approach may be appropriate. For the time being at least, online DNA testing will remain the only way for many people to get the information.

Why people want to know

As our research has shown, access to information about their genetic heritage is of great importance to many people affected by sperm donation. They may be concerned about hereditary conditions or simply curious about their family history.

And for many people conceived through sperm donation, knowing their donor is fundamental to understanding their identity. The unexpected discovery that you are not genetically who you think you are can have profound consequences.

One participant in our ongoing study said: “I couldn’t look at my face in the mirror… I couldn’t [only] thinking, 'What the hell happened?'. It felt like my whole childhood had been a lie… Everything I believed about who I was and what I was.”

The legal protection of donor anonymity seems wrong to many donors. As one person put it, “My family history has been hidden from me my whole life. I've done nothing wrong. I'm just trying to find out who I am.” Some believe they have no choice but to use a DNA test to find this information, but are aware that doing so could upset others.

The terms and conditions of online DNA testing providers vary, but often require users to be of legal age. However, age verification is usually limited to providing a date of birth. Providers often allow parents to submit a child's sample and manage their account.

While participants indicated that they could easily circumvent age restrictions, the decision of when to conduct a DNA test for a child was sometimes perceived as a moral dilemma: “It is still this balancing act of whether [child] contact me in 10 years and [say]'Oh, you gave away my DNA' instead of 'Oh, you could have done a DNA test and I could have found my genetic family sooner.' … I feel the weight of that.”

What are you signing up for?

Often, just by visiting an online DNA testing website and browsing the pages, you are agreeing to be legally bound by extensive terms and conditions. Many people are unaware of what they are agreeing to or what the implications may be.

For example, if you sign up for DNA services, your DNA sample may be stored in a biobank (a large collection of human biological samples held primarily for use in health and medical research) overseas. Your DNA data may be used for research or the development of commercial products, or shared with law enforcement agencies. In 2018, the use of DNA databases helped solve the Golden State Killer case in California.

Some countries have stricter data protection laws than others, so what is permissible varies and changes over time. For example, under new data protection laws in the UK and Europe, sharing DNA data with law enforcement agencies is now more strictly regulated than in the past.

Storing DNA data securely can also be difficult. 23andMe, one of the larger online DNA testing providers, was hacked in 2023. This data theft reportedly affected nearly 7 million customers. An ongoing investigation is examining whether 23andMe had sufficient security measures in place to protect the highly sensitive information in its possession.

There are also potential issues surrounding the reliability of online DNA testing for health and wellbeing purposes. Results may be inaccurate or require interpretation to determine what the information means to the individual, sometimes causing stress and agitation for no reason.

If you decide to take an online DNA test, you should read the legal information offered. The Office of the Privacy Commissioner of Canada has published some guidance on what to look out for. Or watch the following video created by our colleague who is researching in New Zealand:

This article is republished from The Conversation under a Creative Commons license. Read the original article.