HFEA: Proposed changes to the UK fertility law - Professor Turi King

Geneticist Professor Turi King shares her views on donor anonymity in response to the HFEA (Human Fertilisation & Embryology Authority) opening a consultation on UK fertility law.

Episode Transcript

(00:01):
The Human Fertilisation and Embryology Authority, an organization 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 UK. Overseeing, what is
quite literally the potential gifting of a life, and seeking to ensure that donors and recipients

(00:24):
are well cared for as part of that process. For those reasons they are Central in terms
of advising the government on UK 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 that role the HFEA have recently opened a new public consultation on proposed changes

(00:50):
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 1st, 2005, have known that, by law, anyone conceived

(01:17):
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,

(01:38):
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

(02:00):
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

(02:25):
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

(02:48):
contributors are there is because frankly donor and donor conceived anonymity went out the windows
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.
When you take one of these DNA tests the company will give you back a list of individuals in their

(03:12):
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 the donor, and from that use genetic genealogy to home in on a donor's family.

(03:35):
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.

(04:00):
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

(04:25):
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 many others 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.

(04:51):
And there really is 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 to be irresponsible not to have clinics tell potential donors about this.

(05:14):
Donors these days are making a tremendous gift, in the knowledge that the results of that gift
may 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 the HFEA website.