Home DNA test kits are a 'clear threat' to donor anonymity warns HFEA.


Home DNA test kits are a 'clear threat' to donor anonymity warns HFEA.

Fertility regulator warns that home DNA testing kist are a 'clear threat' to donor anonymity.

The increased popularity of DNA testing kits is a “clear threat” to egg and sperm donor anonymity in the UK, the fertility regulator has warned.

Even people who donated sperm or eggs before 2005, when a law chance removed the right to keep their identity secret from the resulting children, are affected.

DNA testing services from 23andMe, Ancestry.com and MyHeritage among others allow users to trace their ancestry and in some cases uncover traits and health information or connect with relatives.

Once a user has submitted their DNA through a saliva sample, eligible companies give them the chance to opt into making their information searchable by potential relatives or receiving notifications when new potential relatives join the service.

Even distant family members could find themselves embroiled in geneology issues despite never submitting their own DNA, as once enough relatives add DNA lineages to public websites there is potential for any relative to discover whether they are also a genetic match.

Sally Cheshire CBE, chair of the Human Fertility and Embryology Authority (Hfea), said a kit in the form of a well-meaning festive gift has the potential to “quickly turn family life and relationships upside-down” .

“With the emerging trend of DIY DNA testing websites allowing anyone to investigate genetic relationships, donors who once thought they would be anonymous forever could be in for a rude awakening,” said told i.

“Similarly, donor conceived-people who manage to track down their biological parents could be left in turmoil if the desire for a reunion is not shared.”

The end of anonymity

Anonymity for people who donate sperm, eggs or embryos was lifted in April 2005 in the UK. Previously, children conceived used donor sperm were only able to access limited amounts of non-identifying information about their donor once they reached the age of 18.

People conceived from eggs, sperm or embryos donated after 1 April 2005 will be eligible to find out information including a donor’s physical description, birthday details and ethnicity from their sixteenth birthday, and more data including full names, most recently-held addresses on record and date and town of birth once they turn 18-years-old.

The Hfea has previously cautioned that the rise of home DNA testing and matching services means that donors are more likely to be identified regardless of the legal status of their anonymity at the time, warning donors: “It may be a shock to realise that you could be identified or contacted by someone born from your donation.”

“Many donor-conceived people want to find out about their biological ‘families’, which is why the law around donor anonymity was changed,” Ms Cheshire said. “However, it’s crucial that this is done in a supportive environment to help everyone involved during this highly emotional time.

“There’s no question that discoveries about genetic relatives can have a dramatic impact on people and their families, especially in situations where someone has been conceived using donor eggs or sperm and didn’t know.

“The rising trend of DNA matching services has essentially signalled a clear threat to donor anonymity, even for donors who donated before the change in law.”

The Hfea holds information on every fertility treatment in the UK since 1991, collecting data and statistics from the average of 70,000 fertility treatments performed each year between 1991 and 2016.

More than 3,700 children were born in the UK as a result of donated sperm or eggs in 2017, according to its latest data.

Connecting people with their origins

“While the numbers of people who apply to open our register are still small, we know that there is a deep desire for people to find out about their origins,” Ms Cheshire added. 

“These numbers will increase as we approach 2023, 18 years since anonymity was lifted and the donor-conceived young people start to reach adulthood.”

23andMe, the consumer genomics company founded by Susan Wojcicki, the former wife of Google co-founder Sergey Brin, offers a crisis text line for customers who discovered something they did not anticipate to seek help.

"The 23andMe DNA Relatives feature is an optional feature and requires customers to opt-in to the feature to access it. It is a popular, interactive feature that allows you to find and connect with genetic relatives and see specific DNA segments you share with them," the company said.

"Individuals who have donated sperm or egg(s), or are donor-conceived themselves should note that participating in the DNA Relatives feature may reveal previously unknown relationships including the potential of close biological relatives (such as a biological father, biological child, or siblings).

Some individuals may be open to exploring new biological relationships and choose to opt in to the DNA Relatives feature, while others may wish to preserve their anonymity by choosing not to participate in the DNA Relatives feature."

To make new donors aware of the risks around DNA matching services, the Hfea recently updated its Code of Practice rule book for fertility clinics, which now requires them to talk through the implications of DNA matching services with donors and patients considering using a donor as part of their fertility treatment.

“We’ve also been in touch with the biggest DNA matching companies to raise concerns about the lack of signposting to support for people who might find out that they are donor-conceived,” Ms Cheshire added. 

“Some of these companies have already made changes to their website information to advise customers of the potential implications, but there’s still more work to be done.”

Article: 1st January 2020  inews.co.uk