# Donor Anonymity in the age of Genetic genealogy and DNA testing



## solomum (Apr 17, 2012)

The DCN conference this weekend was extremely interesting.  There was a talk from a genetic genealogist who basically said that the notion of anonymity in the age of DNA testing was dead.  She explained that the DNA genealogical websites are growing exponentially and that millions of people are signing up, and millions of people are making connections.  To quote: " All parties concerned must be aware that, in 2016, donor anonymity does not exist."

After her talk I joined an adoption tracing DNA board  and people on there are finding their birth parents with incredible ease!  There are match stories aplenty.  The DNA match doesn't have to be with the genetic parents... they match with first, second, third, four cousins, and from this information it's possible to trace back and find the common ancestor, or a surname.  Anonymity in the age of the internet and DNA analysis makes no sense. 

Really this post should go in the section on those who plan not to tell, on the grounds that her argument was that not telling is irrelevant now, offspring are going to find out,  if for no other reason than drugs are likely to be created for people specifically based on what their DNA profile tells about them so DNA is testing is going to soon become part of everyday life.  I say this not to persuade those parents to tell, but because the decision not to tell needs to be made with a full awareness of the facts. i.e. that the act of not telling no longer makes any difference to whether a child will find out if they are donor conceived or not.  

Here's an abstract of her argument below (it was recently published in Human Reproduction).  

The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation
out of business
Joyce C. Harper1,*, Debbie Kennett2, and Dan Reisel3
1Embryology, IVF and Reproductive Genetics Group, Institute for Women’s Health, University College London, London, UK 2Research Department of Genetics, Evolution and Environment, University College London, London, UK 3Centre for Ethics in Women’s Health, Institute for Women’s Health, University College London, London, UK
*Correspondence address. E-mail: [email protected]
Submitted on February 10, 2016; resubmitted on February 25, 2016; accepted on March 2, 2016
abstract: Thousands of people worldwide have been conceived using donor gametes, but not all parents tell their children of their origin. Several countries now allow donor-conceived offspring to potentially know their genetic parent if they are informed of their donor-conceived status. At the same time, personal genetic testing is a rapidly expanding field. Over 3 million people have already used direct-to-consumer genetic testing to find information about their ancestry, and many are participating in international genetic genealogy databases that will match them with relatives. The increased prevalence of these technologies poses numerous challenges to the current practice of gamete donation. (i) Whether they are donating in a country that practices anonymous donation or not, donors should be informed that their anonymity is not guar- anteed, as they may be traced if their DNA, or that of a relative, is added to a database. (ii) Donor-conceived adults who have not been informed of their status may find out that they are donor-conceived. (iii) Parents using donor conception need to be fully informed that their children’s DNA will identify that they are not the biological parents and they should be encouraged to disclose the use of donor gametes to their children. Together, these concerns make urgent a wide-ranging societal conversation about how to best safeguard and promote the interests of donor-conceived offspring and protect the rights of donors. Specifically, there is a need to ensure that new genetic information is communicated in a way that promotes both the safety and the privacy rights of offspring and donors alike. All parties concerned must be aware that, in 2016, donor anonymity does not exist.
Key words: gamete donation / donor conception / anonymity / genetic testing / disclosure


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## theodora (Dec 14, 2010)

Out of curiosity, what testing is usually used in the UK? 

My husband is French. We all did 23andme testing, & the 685 "cousins" who show up for my husband are so far away as to be unrecognizable (the highest share percentage is something like 0.22%). In my case, as an American, we actually found people we could identify, & there are thousands & thousands of "cousins". So being able to find a donor also depends on the donors or their relatives actually testing using a service that is local to where people are, no?


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## solomum (Apr 17, 2012)

1. I think she said that the three main companies doing genetic genealogy were (apart from the numerous free ones in the UK): 
ancestry.com/23 and me/and family tree DNA.
I think she said that family tree DNA has a specific site for people searching for their donor conceived relatives.

2. Yes, to your second point: matching does depend on who signs up. But the fact is, I suppose, that it's possible to trace genetic roots even from second or third cousin matches... you can get a name (with paternal lines), work out a link. And most people have a lot of second cousins..

Alsothese sites are growing at an incredible rate... she showed us a graph and the lines are shooting upwards... doubling in size in a year, estimated to grow from 3-10 million members in the very near future.

Also organisations like ancestry.com, which started in the USA, and then moved to the UK are now opening in, I think she said 27 countries. And that's also growing. Genealogy is apparently the second biggest search after porn on the internet.

Here are some of the links she provided if anyone is interested in following up:
ISOGG: www.isogg.orgISOGG Wiki: www.isogg.org/wikiISOGG social media: www.social media.com/groups/isoggGenetic genealogy mailing lists and social media groups: www.isogg.org/wiki/Genetic_genealogy_mailing_listsGenetic genealogy blogs: www.isogg.org/wiki/Genetic_genealogy_blogsDebbie's blog: http://cruwys.blogspot.co.uk

/links


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## Blondie71 (Oct 26, 2011)

I completely believe that this is going to be very commonplace in the future as technology is moving at lightning speed and people are relying on social media & online friends/family more than ever! Funny enough I've just read in my local paper that an American woman is looking for her British dad after her sister spotted an ad for dna testing that was cheap and they thought that they'd do it for an experience as they may find more relatives... well it turns out shocking as they are only half sisters, and the man she believed to be her "dad" for the last 50 odd years is not her dad... oh what a mess her mum (now deceased) left behind   but at the end of it she actually has a surname for the real dad thanks to the dna database so hopefully he'll be alive to fill in the blanks for this poor lady.


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## MandyPandy (May 10, 2010)

It makes sense but still depends entirely on whether the child ever knows they're donor conceived.  For all I know, I could be but my assumption is that I'm not, so I'd never go looking.


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## solomum (Apr 17, 2012)

I don't think it makes any difference whether the child suspects or knows they are donor conceived.That's the point.  In fact that's the point of the story above.  A woman discovered her dad wasn't her biological dad by accident. 
People do genealogy searches ALL the time.  I'm about to do one to find out more about my great grandmother who died young.  
Genealogical websites are incredibly common and growing fast. People are going to have their DNA sequenced for other reasons, as well for e.g. to find specific drug treatments.  A person might go on a site like this not because they want to find out if they are donor conceived or adopted but because they are doing a family tree.
Maintaining 'anonymity' would rely on a donor conceived person never ever going on a site like this throughout their life.  
And means there is a very high chance that at some parents are going to have their decision not to disclose exposed.
And late disclosure/and in particular surprise disclosures are what everyone says you need to avoid in donor conception for the wellbeing of that DC person. 
I'm not saying any of this to scare monger - I'm saying this because it's information that is crucial to those who are in the not telling camp.
Anonymity is becoming a fiction in the age of DNA testing.


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## nevertoolate (Jul 15, 2015)

This is very interesting thanks for posting.
One of the sites mentioned on you post has recently been advertised on th tv. Maybe this will get more popular however in an age also were want to maintain no big brother having a dna database sitting with the government, the idea of giving some random company a sample of your dna is something I imagine the majority of people would not be keen on. The government cancelled rolling out identity cards for the uk population due to objections and that is not storing Dna information.
Also the term of the person finding out the person bringing her up was not her 'real' dad is something I question. He is very much her real dad if he cared for and loved for her over that period of time.


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## K jade (Aug 11, 2013)

My friend tried to do one of those DNa medical  assessments as she's adopted and wanted to know if she was high risk of breast cancer as her birth mum had it 3 times. The Dr said sorry I can't tell u anything without your bm, I need u to come in with her! 
My friend: I've never met their woman and I'm not about  to contact her now! 
The dr:well I can't help u then! 
So that was the end or that. 

Thing is DNA tests have been around for year s
as has the risk of people finding out they were adopted, dc, a love child etc.  
But definitely an interesting article


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## daisyg (Jan 7, 2004)

Hi,

I was at the DCN conference where this was presented and it was a really fascinating talk.  Genealogy is certainly a growing area and it may be that these companies can provide a way for DC children to find half siblings and even donors in the future.  

Personally, I wonder if my children would be able to find half sibs/donor once this is available in Spain for example?  Who knows (and who knows whether they will want to!)  Personally, I was thinking about doing a swab for me and the kids just to have a bit of information as I used anonymous donors.  My only worry is that what if my twins are not genetically related!!!

The other interesting thing in the talk was the misunderstanding of epigenetics (not helped by an inaccurate Daily Mail article recently).  There is an understandable desire for parents of DC children to really hope and want their DNA to be part of their child, but that is not possible in real terms.  You cannot change the DNA of your child - but we do know that your uterine environment can influence the expression of genes.  It can be confusing I think (to me as well) and the DCN talk cleared up a lot of myths that are out there!

I think the people who are not telling will have food for thought of course.  Telling is a very difficult issue for many (even those who want to do it!).  I do think that the genetic testing genie is out of the bottle and time will only increase the opportunity for testing to become easy and cheap.  All kinds of secrets will potentially come and not just for DC kids!!  However, it shouldn't be used as a threat to those in the no telling camp, as I think those people should be supported because they may change their minds later.  It is better to have information out there and let people make up their minds without coercion!

What I would say is that if you have told even one other person (including your partner) then the chance is there that it will come out at some time in the future and experience shows that can be damaging for DC children (let alone the now strong chance they will find out through DNA testing).

What this means for those in the no tell camp I am not sure, as I don't think it will immediately make them feel any differently?  It is an interesting discussion??

D xxx


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## daisyg (Jan 7, 2004)

Hi,

Thinking about the term 'real' dad.  It is very loaded of course as DC parents obviously feel absolutely the real parents to their children (and of course they are!).

However, an interesting discussion with my son revealed that he used the term 'real' mum to mean real in the genetic sense - so that was both a jolt and a revelation to me.  He is 9 and knew that I used a seed from a man and another lady's egg and therefore asked 'are you my real mum?' (Are you my genetic mum?).


I eventually realised what he meant after some discussion and sadness (on my part).  But it was fascinating as it was something I had been dreading my kids saying to me.  But I realised they can use the word 'real' without it being something hurtful in their minds!  He knows I am his 'real' mum though of course in the sense of I am the only Mummy he will ever have and the love we have for each other is exactly as any other mum and son.

D xxx


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## nevertoolate (Jul 15, 2015)

Hi daisy
This subject around the potential of Dna passing to the baby is a new area investigation so I am surprised that definitive statements can be made at this stage by anyone.
Sending a swab to an outside company is something that many people would not be prepared to do so I cannot see how these sites will take off that is being stated. 
As the dcn so heavily sees just one point of view of telling , I personally feel that this forum offers a much more rounded and healthy range of opinions for people to make an informed decision for their families.


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## daisyg (Jan 7, 2004)

Hi Dreaming,

Well, of course science progresses but this is what we know at the moment. However, there is as yet no evidence that you can change the donor's DNA just by having their genetic material transferred into your uterus. We will obviously watch with interest the unfolding scientific studies and conclusions if and when they come...

I would ask if it really matters anyway? You are choosing a donor, so why not embrace the fact that the child is not genetically yours?

The three existing genealogy DNA testing sites have millions of people already on their databases. So it has and will be potentially more and more millions of people deciding to discover more about their history and family tree through DNA testing.



> As the DCN so heavily sees just one point of view of telling , I personally feel that this forum offers a much more rounded and healthy range of opinions for people to make an informed decision for their families


I agree that a range of opinions is healthy and necessary. However, it is not just the DCN who is in favour of telling where possible (with support), it is many, many parents - some of whom are on the FF boards and have nothing to do with DCN. Informed decision is absolutely essential of course - but misinformation or ignorance doesn't help anyone.
D xx


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## Mrs G 0207 (Jul 8, 2014)

Hmmm i have to chose my words carefully here. 
I feel this is just a scaremonger tactic for those of us who chose not to tell. Realistically unless you are in a position where you need to use a donor, do you really think about DNA? I know I don't. 
Of course children who know are going to want to do this as they are always going to wonder who there 'real' parents are (the same as children who are adopted), but those who don't know probably won't give it a second thought. 
I'm not donor conceived  (as far as I know!!) And I couldn't care less about my family DNA. What would it really tell me? I know my ancestors are from norway/Sweden as my mum has just been diagnosed with vikings disease. I'm still not bothered about my DNA though. Me and my hubby have been through genetic testing due to him carrying the CF gene. He also doesn't care which side of his family it came from. 
All I care about is that my child is happy and loved. I don't want them.growing up always wondering who there 'real' parents are. Sorry not for me.


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## nevertoolate (Jul 15, 2015)

Hi
I also need to choose my words carefully, firstly any degree of judgement on other people's choices for their families is wrong. I support women telling or not telling. Saying why not embrace the child is not genetically yours makes a massive amount of assumptions about my thoughts and feelings which really makes me sad that women cannot just be respected around choosing donors and the issue of telling or not telling instead of being judged.


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## daisyg (Jan 7, 2004)

Hi Dreaming,

I am not judging, I am giving my opinion based on my own personal experience!  That is what I do on these boards.  People are able to make up their own minds I believe, but it is good to get all views don't you think?  I am pro tell in MY family but I can't make people become tell just by expressing my views...  

I think you confuse giving a personal experience and view with judging?  I am not making massive amounts of judgement about your feelings at all.  I am not even thinking of you specifically when I talk about donor conception.  It is an exchange of ideas which I hope is a good thing?

I hoped it was more clear that I was giving my experience and thoughts?  I am really sorry that you feel my words were meant like that for you - they honestly weren't.  However, I do forget how sensitive we feel when we are just starting down this very difficult path.  I am at the other end, and you are just beginning so I can see how hard that must be.  
D xxx


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## nevertoolate (Jul 15, 2015)

Hi
If you look at the last line of you previous message you mention misinformation and ignorance. People who tell or don't tell have their own opinions which I respect. Nobody or organisation has any higher moral ground on this issue.


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## daisyg (Jan 7, 2004)

Dreaming,

I was specifically referring to the issue of epigenetics and misinformation/ignorance about transfer of DNA etc etc.  Mainly because I felt it followed on from the discussion at the DCN conference and the information posted by solomum.  I think you have misunderstood what I was saying.  I have never said or implied that any person or organisation has any higher moral ground on this issue.
Please let's stop now!
D x


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## Mrs G 0207 (Jul 8, 2014)

I do feel a bit 'judged' by the DCN, I personally wouldn't use them for advice as I feel they are just there to push telling. 
Whilst I respect a family that do tell, I wish to be respected for not and not be made to feel like a bad parent. I wouldn't push a teller into not telling, I suppose i wish it was the same vice versa. 
I think the whole notion of your child doing a DNA and discovering your not the parent is very 'hollywood' and realistically the chances are very very low of that happening.


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## RB76 (Jul 27, 2011)

I read the first post with real interest as I personally think this issue is going to be a huge one in the future. That is the issue of donor conceived people, with numbers of them increasing so rapidly as so many of us use donors. It has occurred to me before that anonymity may not actually be anonymity in the face of scientific advances.

For me, scary though it is, I think it's a good thing. We are pro telling and although I don't regret having treatment abroad at all, I am sad we don't have an ID release donor. What is happening increasingly is that people go abroad because of the better costs and success rates, after, as in our case, numerous failed cycles in the UK and having spent thousands. So obviously, we go where we can afford to, and where results are better. But then afterwards have to deal with the issue of an anonymous donor (or that's how it is for me anyway).

I actually hope DC children can find their donors in the future if they want to. Hard though it would be for me I'm sure, I think it's better for them than always wondering.


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## daisyg (Jan 7, 2004)

Hi Mrs G0207,

I am sorry you do feel that way about the DCN, but I do understand what you are saying.  Honestly, I think you would be pleasantly surprised if you were to call them to talk about any issues to do with DC!

But I understand why you feel you don't want to.  

D xxx


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## Lilly83 (Jan 19, 2012)

Evening all 

Can I just remind you (again) that the general donor board is kept 'neutral' we ask out of respect for everyone posting that should you have strong views either way that you have the seperate telling and non telling threads. We won't allow any judgement of either sides on the general thread as we make it clear the donor boards are for everyone and they should feel comfortable using them, I know it's a very emotive subject so please consider others feelings might not match your own 

Have a good bank holiday everyone, it's raining in Manchester... For a change  

L xx


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## Sassy-lassy (Apr 19, 2012)

I contacted the DCN at the start of our journey and am sorry to say that I absolutely felt judged.  Quite a shock.  A useful resource for those who wish to tell perhaps, but unfortunately less so for those who - for whatever reason - cant :-(


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