Genetic genealogy and the potential to explode donor anonymity

It’s probably the world that I move in but DNA testing for health, genealogical or just curiosity reasons suddenly seems to have exploded into general consciousness.  The other day the Daily Mail (not my favourite paper) had an article that recycled information from an academic paper that recently warned that egg and sperm donors could no longer ever be considered anonymous because of the potential for finding genetic relatives by way of increasingly low-cost DNA testing.  Debbie Kennett, one of the authors of this paper spoke at the DC Network conference in April, demonstrating the capacities of the three main companies offering DNA testing by showing results of tests carried out on herself and other family members.   Tracking down genetic relatives can be straightforward if the person you are looking for or someone in their immediate family has tested and therefore appears on the data base.  So far, this happens rarely in the UK as the data bases covering this country are pretty small (but growing).  Most often you will find that there is a 3rd to 5th cousin match and it takes contact with that person (if they have agreed to share their contact information), a look at their family tree and potentially some family documentation (so it needs their co-operation) in order to find the person being searched for.  I know a DC adult who managed to find someone who confirmed he was the first cousin of the man likely to have been her donor.   Unfortunately the story stops there as the donor, on being contacted by his cousin, said he did not wish contact to be made with the searcher.  Very frustrating.

All this has now become personal for me.  First of all our daughter Zannah decided to test with 23andme.  This is the company that has the biggest UK data base.  It also gives health reports, something not available via Family Tree DNA and AncestryDNA.  Zan is curious about her donor and half-siblings but she particularly wanted to know if she had any health risks not shared with me and also to try and establish her donor’s geographical ancestral roots.  This was really only possible to do if I tested as well so I decided to do so.  There is a tool on 23andMe that allows separation of maternal and paternal DNA inheritance, but you need at least one parent to test as well in order to get any sort of accuracy.  The results have been a mixture of absolutely fascinating and inconclusive.  We have discovered that we have the same blood group but different rhesus factors and share a trait that may make us predisposed to developing blood clots.  Zan has no other risk factors.  Although our results clearly showed and named us as mother and daughter, beyond that neither Zan nor I have a closer genetic match than 3rd to 5th cousin and so far Zannah doesn’t seem minded to follow this up with further research.  Someone who did follow up with considerable zeal is Elizabeth Howard, the first person in the UK to go public about having found her donor via a DNA testing service.  On Father’s Day this year she published a shortened version of her story http://www.conservativewoman.co.uk/elizabeth-howard-a-daughters-detective-story-for-fathers-day/      Her donor, like the the person referred to earlier, does not want contact but Elizabeth does know exactly who he is and what he looks like, and apparently the family resemblances are remarkable.

It would seem important, given the above, that all parents and potential parents of donor conceived children should understand about the possibilities of connections with genetic relatives via DNA testing.  However, once again the forum Fertility Friends have put their heads in the sand, first of all taking down a post from someone (not connected to DC Network) who gave information about this development and then, when the same person put a link to the Daily Mail article, management posted a dire warning about people getting into polarised discussions about it.  Hence, virtually no-one has said anything at all, but the link does remain so at least it is there for the curious to read.

I am sure Debbie and her colleagues are right in saying that anonymity for donors can no longer be guaranteed, but it is difficult to know how fast genetic linking via DNA will take off in the UK.  It is also likely to take longer where overseas donors are concerned, although the data bases for Scandinavia are large.   I paid only £67 for my test and this seems to me to be within the reach of large numbers so cost is unlikely to put people off.  It is a question of the awareness of the possibility becoming widely known and then people deciding if it is something they really want to do…and that is a big question.  Like the locked information on 23andMe about specific predisposing genes for Alzheimer’s Disease, Parkinson’s Disease and the BRACA genes, you cannot unknow something once you know it, so it is important to be prepared for finding out information that may not be comfortable…but on the other hand it could bring comfort and peace of mind as well.  As with most interesting and worthwhile things in life, it’s complicated.  I’m certainly glad I took the leap.

http://www.dailymail.co.uk/health/article-3648672/DNA-tests-expose-parents-staying-mum-donor-babies-Doctors-say-rise-relative-finder-kits-lift-lid-children-conceived.html

http://humrep.oxfordjournals.org/content/31/6/1135.abstract

 

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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4 Responses to Genetic genealogy and the potential to explode donor anonymity

  1. Sandra says:

    It was me who published to fertility friends. It’s very odd… The idea that a factual article would disturb people who aren’t pro telling, and therefore it has to be ignored EVEN IF IT’S TRUE.

    Maybe if I ignore Brexit in the same way it too will disappear.

    Here’s hoping.

    • oliviasview says:

      Hi Sandra
      I thought the posts were well informed and well written. Good to know who is behind them. Keep up the good work.
      Sadly I don’t think BREXIT is going to go away.

  2. polly says:

    Hi Olivia
    I think that seeking family medical history is, for adoptees/DC persons, often a justification for DNA testing. :Learning ethnicity and the hope that a DNA relative might at some stage be matched is of great significance. In post-adoption services,, a request for medical info is often a ‘legitimate’ reason to make enquiries concerning unknown family history/origins. It is not unusual for mature adoptees to seek medical info for their children/grandchildren (as though they themselves (adoptees) are of lesser importance. Loyalty and protectiveness towards adoptive/DC family makes it difficult for adoptees/DC persons to express (up front) the need for family origin information.

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