Professor Turi King reacts to HFEA consultation on modernising UK fertility law

Long gone are the days when someone would donate and then never really expect to know, let alone meet, the person who was the result of that donation

The Human Fertilisation and Embryology Authority (HFEA), an organisation which has become close to my heart, has an important role to play in our society. They were set up in 1990 as the independent regulator of fertility treatment and research in the U.K. – overseeing what is, quite literally, the potential gifting of a life, and seeking to ensure that donors and recipients are well cared for as part of that process. For those reasons, they are central in terms of advising the government on U.K. fertility law as it changes in light of technological developments: any updates to the law are ultimately the decision for government and parliament. As part of this role, the HFEA have recently opened a new public consultation on proposed changes to the law in a number of areas: patient safety, consent, scientific developments and access to donor information and it’s this last one which is strongly connected to the work that I do – not least in my role as lead genetic genealogist on the BBC’s DNA Family Secrets.

At present, donors who donated post April 1, 2005, have known that, by law, anyone conceived through their donation could ask for identifying information once they reach 18 years of age. Anyone donating prior to that would expect to remain anonymous forever unless they themselves chose to lift their anonymity.  However, we know that it is simply no longer possible to guarantee any anonymity for donors at any time and therefore, among a number of proposed changes, the HFEA is suggesting that there be a legal requirement by clinics to inform donors and recipients about the risk of donor conceived children finding out their donor’s identity before the law currently allows via DNA testing companies. Alongside this they want to ensure that all those using donation services have accessed information about the implications of their decision before starting treatment. To me, this is really a no-brainer.

Long gone are the days when someone would donate and then never really expect to know, let alone meet, the person who was the result of that donation. Every series of DNA Family Secrets that we’ve done we’ve dealt with subjects around donor conception either in the form of someone who was donor conceived who would like to know about their ancestry and/or find their donor or, conversely, someone who has donated and wants to make themselves available to anyone who might want to find them. Every case we do on the programme, we refer to the official routes to take to learn more about a donor, but the very fact our television contributors are there is because, frankly, donor and donor-conceived anonymity really went out the window some years ago with the rise of direct-to-consumer DNA testing with companies such as Ancestry, 23andMe and others, with their enormous databases of millions of people.

it really is just a matter of time for someone who wants to trace their donor to find them

When you take one of these DNA tests, the company will give you back of list of individuals in their database with whom you share more DNA than average and how you might be related – you share more of your DNA with close relatives than more distant ones. A donor-conceived individual taking a DNA test then looks for DNA matches that are from the side of the family tree they hope to trace a donor from and from that use genetic genealogy to home in on a donor.  The sheer size of the databases these days make it, at times, ridiculously easy to find a donor. One of the fastest cases I’ve worked on, without the donor being on the database themselves, was less than 20 minutes: that was looking at DNA matches on two separate databases, working out how they were related to one another, and from that determining who the donor must be. So for those donors who think, ‘Well I’m not on the database, I won’t be found’, I can tell you from experience, that is a common misunderstanding. All we need is a couple of first, second, third cousins to have tested and we can begin to work with that. And as these databases continue to grow, which they are, the Ancestry database alone has just passed 23 million people, then it really is just a matter of time for someone who wants to trace their donor to find them.

As you can imagine, I get hundreds of emails from people wanting help with their family trees, among them people who are donor conceived. I have also been contacted by parents of children wanting to confirm or find their child’s biological parent sometimes before the child reaches 18. And there is really no way to stop them from doing it. Teenagers lying about their age on websites is hardly uncommon and parents are guided through activating kits for their children who are minors.

Therefore what the HFEA is recommending makes complete sense to me. From my experience, I would suggest it would irresponsible not to have clinics tell potential donors about this. Donors these days are making a tremendous gift in the knowledge that the results of that gift might want to find out who they are when they reach adulthood. In the light of current technology, donors also need to know that that contact may happen earlier than they think.

To find out more about the consultation, please see this page.

Turi King

Turi is a scientist, presenter, speaker and author who is passionate about communicating science to the public.

Turi uses genetics in the fields of forensics, history and archaeology. Alongside this she’s worked in the field of genetic genealogy since 2000. She is perhaps best known her work “cracking one of the biggest forensic DNA cases in history” (Globe and Mail, February 2013) leading the genetic analysis for the identification of King Richard III.

Turi started her career in archaeology, first in Canada and later reading for a degree in Archaeology and Anthropology at the University of Cambridge. Graduating with a BA(Hons), she then went to study at the world-famous Genetics Department at the University of Leicester on a scholarship, to read for an MSc in Molecular Genetics.