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Personal genetic testing and the implications for the donor conception community

26 February 2018
Appeared in BioNews 939

2017 was the year that personal genetic testing took off in a big way. Much of the growth took place in the last few months of the year as companies vied for market share by launching sales and TV advertising campaigns in the run-up to Christmas. Thousands if not millions of people are likely to have received a DNA kit in their Christmas stockings, and these kits are now starting to swell the company databases. 

The genetic genealogy market is dominated by four companies. AncestryDNA, the market leader, has more than doubled its database in the last year from three million in January 2017 to more than seven million today. The 23andMe database has grown from three million in November 2017 to over five million. MyHeritage launched a DNA testing service in November 2016 and sold over one million kits in their first year of trading. Family Tree DNA have not revealed up-to-date sales figures but were reported to have a customer base of 1.5 million in August 2017. While much of the early growth was in the USA, the companies are now boosting their marketing and advertising efforts in Europe and Australasia.

The TV adverts encourage people to test to find out their percentages of 'British', 'Irish' or 'Scandinavian' DNA, but the companies also allow customers to participate in a relative-matching database. For genealogists, this aspect of the test has a very practical utility and it can be satisfying to receive confirmation of your family history research. But the DNA kits in the Christmas stockings also have the potential to open up a Pandora's box of family secrets.

People are finding close relatives in the databases such as siblings or even biological parents that they did not know they had. Conversely, the tests can reveal that relationships are not as expected as, for example, when a parent and child do not show up as a match or when presumed full siblings turn out to be half-siblings.

The dramatic growth of the databases is raising ethical challenges for the donor conception community. It has been recognised for some time that donor anonymity can no longer be guaranteed but this hypothetical threat is now very much a reality.

Donor conceived individuals are using genetic genealogy databases to match with genetic relatives and identify their biological parents, and there have been many success stories. There are now also a number of cases where people have accidentally discovered that they were donor conceived after taking a commercial DNA test. Some families who have used the services of a fertility clinic have learnt through DNA testing that the clinic owner substituted his own sperm for that of the father (see BioNews 931).

We are entering uncharted territory now that donor anonymity can be so easily circumvented. The combination of DNA testing, online databases and large social networking websites means that it can be easy to track down and contact newly found genetic relatives. What is the etiquette for contacting your newly identified donor who was promised anonymity? What are the obligations of the donor to respond to contact? How will these discoveries affect other family members?

Informal support networks have sprung up in the genetic genealogy community to help with unknown parentage searches and to deal with the emotional and psychological fallout of DNA surprises. There are a number of self-help groups on Facebook such as DNA Detectives, which now has over 80,000 members. A spin-off group, DNA for the Donor Conceived, specialises in helping donor conceived individuals search for their biological parents and donors searching for their biological children. These groups are all run by volunteers who have learnt from personal experience the most effective ways to handle searches and contact relatives. The Donor Conception Network is also able to provide support and refer people for specialised counselling where appropriate. But these support groups are probably just scratching the surface.

There have been calls in the USA for genetic counsellors to get involved in ancestry testing, particularly in cases where customers receive unexpected results. One genetic counsellor in the USA helps to run a secret support group on Facebook for people who have received family surprises as a result of a genetic test. In the UK, genetic counselling is available on the NHS but it is necessary to get a referral from a general practitioner or hospital consultant and the service is geared up for providing support for clinical issues and not psychosocial issues arising as a result of consumer genetic testing. There is perhaps scope for genetic counsellors to set up in private practice to fill this gap in the market or for trained counsellors and psychotherapists to specialise in providing support for the unexpected consequences of genetic testing.

The massive growth of the consumer DNA databases has important implications for everyone working in the fertility industry and for parents who are considering using egg or sperm donation to start or complete their family. Parents should be advised from the outset of the high likelihood of the child discovering his or her donor origins as a result of genetic ancestry testing. Donors should be alerted to the possibility that their anonymity could be breached.

Personal genetic testing is here to stay. The fertility sector must now get to grips with the consequences.

5 August 2019 - by Francesca Sowerbutts 
23andMe advertises itself on its website as a way to 'meet your genes'. You can send off a spit sample, and for $99-$199, a report based on your genetics will be emailed to you a few weeks later...
17 June 2019 - by Sarah Norcross 
This coming Wednesday evening (19 June), the Progress Educational Trust – the charity that publishes BioNews – is holding a free-to-attend public event in London discussing direct-to-consumer genetic testing in relation to donor anonymity...
18 June 2018 - by Eleanor Taylor 
As an embryologist working in a fertility clinic, I frequently use donor sperm to help individuals and couples become parents. In my little fertility clinic bubble, sperm donation is a highly regulated process...
9 April 2018 - by Dr Axel Schumacher 
Reading Debbie Kennett's recent comment article on personal genetic testing (see BioNews 939), I found myself in complete agreement...
26 March 2018 - by Martha Henriques 
At-home genetic test results should be verified by medical professionals, researchers have warned, as a study reveals that 40 percent of the time DIY testing kits incorrectly identify genetic variants...
30 October 2017 - by Sarah Pritchard 
A retired US fertility doctor accused of using his own sperm to inseminate patients at his clinic will plead guilty to misleading investigators...
5 June 2017 - by Rikita Patel 
A donor-conceived Dutch woman, Emi Stikkelman, is the first to find her sperm donor using an American commercial DNA bank...
22 May 2017 - by Jen Willows 
Customers of Ancestry's consumer DNA tests may be unaware of what they have signed away, a US lawyer has suggested...
6 March 2017 - by Matthew Thomas 
Dr Kat Arney leads a fascinating and wide-ranging discussion of genetic testing – from testing for cancer genes to whether your child's DNA can predict their future sporting ability...
Anonymity was always wrong ... ( - 26/02/2018)
Anonymity was always wrong.  It was wrong when they lied to people about being adopted.  It was wrong when they took babies away from "unfit" (read: single) mothers.  And it remains wrong for children conceived through gamete donation.

Saying that genetic testing has created a "problem" for people who "chose anonymity" is like saying that ethical guidelines have created a problem for researchers who would prefer to infect people with polio.  It's like saying that email has created "problems" for people who used to be able to hide their affairs.  It's like saying that newspapers created "problems" for Harvey Weinstein.  Didn't he create his own problems?

The problem is not the technology that reveals the truth but the lie itself and the shame that precedes the lie.  Instead of helping people manage the shame of infertility, the doctors told them to lie.   But donor conception is not a treatment for infertility.  A parent who is ashamed of their infertility and afraid to tell their child the truth has placed a cancer at the heart of their family.  The sooner we treat that cancer, the better off everyone in that family will be.

Every social worker knows what happened to families that lied about adoption but the doctors didn't care about that knowledge because the people holding it did not have medical degrees.  REs have been playing god long enough -- the sooner that power is taken from them and we send them back to the lab where they belong -- the better off we will all be.
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