There is no hiding place with DNA testing

It is likely that Ryan Kramer, co-founder of the Donor Sibling Registry, was the first donor conceived person to find the identity of their donor via DNA testing (and some detective work) but he is only the forerunner of what is a growing trend.  DC Network has  been contacted by a man who had recently come to the shocked conclusion that he must have been donor conceived, as his DNA did not tally with close relatives.  He had been innocently researching the genus of his surname and took the 23 and Me test, only to be confronted by information he wasn’t sure he wanted to know.  His mother has reluctantly confirmed his conclusion.   A donor conceived adult I know traced a first cousin of her donor via the same test.  Sadly and tantalisingly the donor, on being contacted by his cousin, has refused contact.  Bill Cordray, now in his early seventies, was told by his mother when he was 37 that he was donor conceived.  It is only very recently that, via DNA testing, he has discovered who his donor was (his mother’s doctor) and been found by the wife of a sixth cousin who lives in Norway, leading to connections with several half-siblings and other genetic relatives.   These people are by no means the only ones who are making links to donors and others via access to modern DNA testing.

With the exception of Ryan Kramer, all the people referred to above are over thirty and you might say belong to a very different generation of donor conceived people.   Their donors were anonymous and in an era of secrecy they did not discover their origins until either teenage or adult years.  As more and more people put their DNA in the banks of companies like 23 and Me, searches are increasingly going to come up with sometimes unexpected and occasionally un-sought-after connections.

Egg and sperm donors in the UK have now been identifiable for ten years (see previous post).  The first people conceived since 2005 will turn 18 in 2023.  They will then have the right to ask the HFEA for identifiable information about their donor.  What is completely unknown, and rarely talked about, is how many donors are likely to be traceable 18 years on, particularly as very few will have kept their contact information up to date.  How many of these donors will really have thought through the implications of being identifiable?  But the truth is that even if they did wish to disappear, DNA testing has made this virtually impossible.

What I am getting at is that it is not only donors from past times who may be traced via their DNA.  There may be a paper trail for modern donors, but even without this, they have left their unique mark in their DNA, waiting to be discovered by curious people who have come into being as a result of their donation of sperm or eggs.  And as Bill Cordray’s story confirms, these links cross national borders.  It was the curiosity of a woman in Norway that led to connections with a distant cousin (of her husband) in the US.  As more and more people around the world use DNA banks for health or heredity research, more and more donors and half-siblings are going to come to light.

This is great news for donor conceived people who are curious about their ancestry.  It is less good news for parents who had been hoping to keep their child’s origins secret.

Not only should potential donors who do not wish to be found not donate http://www.huffingtonpost.com/wendy-kramer/sperm-donors-who-wish-to-_b_7878688.html  but parents, who do not wish to lose the trust of their children by holding secrets, need to face up to their responsibilities and be open with their kids.  There is no hiding place.

I wrote this piece on a Friday afternoon and hey presto on Saturday morning Guardian Family had a front page article on cheap DNA testing – http://www.theguardian.com/lifeandstyle/2015/aug/15/who-do-you-think-you-are-diy-dna-test-jeremy-kyle

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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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8 Responses to There is no hiding place with DNA testing

  1. gsmwc02 says:

    Between this the Internet and smartphones it’s almost impossible for anyone to live off the grid and never be found. Secrets will be harder to keep and identities will be harder to be disclosed. I think eventually anonymous donation will be banned because it will be impossible for the donor’s identity to ever be kept anonymous. Might as well ban it now and save people the headache of going through searches.

  2. Bothways says:

    I agree with the sentiments behind this. I think more could be done to ensure that identifiable donors in the UK think about the need to update their contact details with the HFEA. I am an egg donor (2009 I think) and although there was quite good implications counselling available in respect of the implications of this act for me and my family, I don’t remember anyone focusing on the obligations that I believe I have towards children born of my donation. Indeed I had to ask to fill in the pen portrait. My friend has recently donated eggs as part of an egg share programme and I’m pretty sure from discussions with her that she hasn’t thought much/at all about implications for the children born to the other mother via her donation. I wish the DSR had a booklet to be given to donors by the clinic and not just recipients (when I was a donor sperm recipient I was given a lot more info/counselling and of course there was the DSR to turn to).

    • I absolutely agree with you. ‘Donors’, or rather potential ‘donors’, really need to be better educated about all of the potential consequences (and obligations) surrounding their contributions before they proceed. But if the DCN did provide a brochure/pamphlet, would the clinics agree to distribute them?
      There is a new documentary out in AU that explores all of these implications, not only for the ‘donor’ conceived, but for the intended parents and most interestingly from the ‘donors’ perspectives. Here is a link to a trailer highlighting a bit from the ‘donors’ POV:

      and a link to the documentary site:
      http://sensiblefilms.com/portfolio/sperm-donors-anonymous/

  3. Bothways says:

    Sorry I meant DCN rather than DSR above (although I suspect you know that).

  4. oliviasview says:

    With regard to a leaflet for donors, both the HFEA and National Gamete Donation Trust (NGDT) provide good information for all donors, the vast majority of whom have a session with a qualified counsellor before donating. The following wording is from the HFEA’s website –

    “Your decision to donate sperm, eggs or embryos is an important one with life-long implications. There are many issues to consider, and some of them are complicated.

    There are a number of organisations that can provide further information about the issues involved. (They go on to give the details of these)

    You may also wish to discuss issues with the counsellor at the clinic where you are donating, as they will have experience in helping you explore the implications of your decision, now and in the future.”

    I am not necessarily saying that this is sufficient but I do think that in the last three or four years much more effort has been made in the UK to help gamete donors think about the implications of what they are doing. I suspect this may be different in other countries. However, I suspect that even in the UK, DNA testing as a way of finding a donor may not be mentioned at counselling sessions or in leaflets and it certainly should be.

  5. Bothways says:

    Thanks for the link WhoseDaughter, that was interesting. Olivia , re your comments, I’m in the UK and had “implications” counselling. The session lasted nearly two hours and the counsellor fairly thoroughly explored all the possible “implications” to me, my partner and the children I already had. At no point did the implications for any young person conceived via my donation arise. I believe that if such a leaflet existed the clinics in the UK probably would hand them out as part of the implications counselling.

  6. oliviasview says:

    I hear you Bothways. My impression is that guidance to clinics about what they need to talk with donors about has improved since 2009 but I am going to check this out with the HFEA and British Infertility Counselling Association, as well as alerting them to the need to inform donors about being found through DNA testing.

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