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DNA Day Has a New Meaning For Me This Year: I’m an NPE

“Not parent expected” – NPE – is a surprise that thousands of us have gotten as a result of consumer ancestry DNA testing. We discover that we are the offspring of a sperm donor, or sexual violence, or a long-ago fuzzy night at a party, a brief interval between partners, an affair, or a single experimental partner-swap long forgotten.

We find out that we aren’t who we thought we were, at least in our genes. I know I’m the same person, of course, but something has changed.

DNA Day to me this year means that I share approximately 25% of the DNA signposts used to assess ancestry – some 700,000 or so data points that mark genetic diversity – with six half-siblings, and possibly more.

I haven’t written about it much, because I can’t. My mind goes in too many directions, contemplating the complex repercussions. And so I’ve mostly shared my story with others who can more objectively tell it, the journalists who contacted me after reading one of my posts: a newspaper reporter, the author of an upcoming book on NPEs, and a film crew for a documentary on genetic testing.

My feelings have evolved. I’m calmer now.

It started in early September, when I heard from a woman who was initially listed as a first cousin on Ancestry.com. I’ve since learned that the half-sib matches often start out that way, both because the ranges of shared markers overlap, and perhaps to slow the avalanche of unexpected information.

In October I looked closely at the data and realized that she and I share nearly as much DNA as do full siblings. We are certainly halfsies. Then after December, in the wake of the massive holiday advertising campaign, matches began to pour in.

I was left with the six half-siblings, and soon after confirmation that the sister I grew up with is indeed a full sibling, although I never doubted that.

Of the six half-siblings, I’ve met two, been in touch with two others, and it is possible that the other two do not even know that they are part of our little kin club. Their adult children and perhaps nieces and nephews are in denial or want to protect them from knowing, or both. I respect that and don’t stalk them through Facebook as it is all-too-easy to do.

One of the six is the “social” offspring of the donor. We can deduce this from the list of relatives and the ways we can be related. I’d share 25% of the surveyed DNA  with a half-sister and 12.5% with her children, but not with the children of her siblings, who presumably have a different father. But when I’m matched to a half-sibling as well as his or her nieces and nephews and more distant relatives, that points to the extended donor family.

This is me. Over an 8-year period in the 1950s, my sister and six half-siblings were conceived using the same mystery sperm donor. We. Are. NPE.

From there, what to do becomes a question of ethics. Should a donor’s right to privacy or a recipient’s right to know her origins prevail? I don’t have an answer for that. I’m willing to step back, not pursue it, perhaps because I’m older. If I were 30 matters might be different; I’d want to know my medical history and possible future. Personal opinions vary.  

What about the rights of the sperm donors who had been promised an anonymity that is no longer possible in this day of spit-in-a-tube time machines? Guido Pennings, professor of ethics and bioethics at Ghent University in Belgium, just published a paper arguing for protecting donor anonymity that has had the folks on  NPE and Donor Conceived private Facebook groups up in arms, and understandably so. The flip side is the effect of the news on the donor’s wife and social children. I’ll be weighing in on this next week for Genetic Literacy Project.

My story has had a happy, if confused, not-quite-finished ending. I no longer check Ancestry and 23andMe every day — maybe once a week. I don’t think about the weirdness every day anymore. I’ve met a few terrific people with whom I share quite a bit of my DNA. I have new friends, and that’s always a good thing. 

But in honor of this DNA Day, I urge the testing companies to take some steps back and tamp down the advertising. Mother’s Day has been and will be upsetting enough; Father’s Day is going to be much worse because of the inherent difference between the male and female gametes. That is, a sperm donation can go much farther than an egg donation, sometimes generating dozens and even more than 100 half-siblings. So please put aside the quest to make money and to provide entertainment and consider that DNA ancestry findings can devastate families.

Discussion
  1. Really? Stop trying to find the truth because it’s upsetting? Maybe the families are recasted because donor children are lied to their whole life! People don’t deserve to know where they come from because of donor anonymity? Anonymous donation is over. No other way around it. Much more consideration of the child created needs to happen. Don’t donate unless you can live with genetic child seeking you out later on.

  2. This is my opinion. You’re entitled to yours too of course. I haven’t been able to read the bioethicists paper yet but I hope he is at least one of us if he is psssing judgment. I was lied to my whole life too, but it was done for a caring reason, even if we now judge it as having been unethical. Accepting this has helped me to deal with it and move on. I wonder if people have different reactions depending on age. I’ve had a good life and am thankful for it. I’ve lived long enough to know what parts of my medical history are relevant to my children. That would not have happened without the donor. At this point n my life, anger at something that happened long ago is not useful to me. I am living in the present. But that’s my view. All are valid.

  3. My anonymous sperm “donor” made a choice to create and purposely abandon me, his child. He has no rights to be left alone. He might have signed some papers, along with my parents that guaranteed his anonymity- But I certainly didn’t. I have a birth right, as every child does. Why should I pay for the selfish actions of my parents?

  4. I am very interested in the upcoming book about NPEs. Can you tell us the author or title so we can watch for it? Or is it too soon for that?

    As an adoptee, I find the disruptive results of consumer DNA testing to be fascinating. For years, we adoptees were told that we were ungrateful and disloyal to ask about our genetic origins, that we were foolish to “not realize who our real family is”, that DNA doesn’t matter. Now, when so many people discover through DNA that their genetics don’t match their families, guess what–it matters!!!!

    I hope these developments can lead to all of us being a little more sympathetic to different points of view now.

  5. “Lost Family” by Libby Copeland. I don’t know when it will be published, I’d say at least 6 months, it is still being fact-checked. Thank you for your post — the adoptee point of view was something I hadn’t considered, but there are indeed many parallels. I do wish we would be more tolerant of other’s views. That is part of why I haven’t written very much about it, I hardly want to get my head bitten off for expressing my opinion. I’m in the same emotional situation as everyone else, but I am a geneticist and when I write authoritatively, I get yelled at, as you can see in other responses for being, well, me. But I do so want to learn more about all of the angles to this situation. To be blunt, I’m grateful to be alive and saddened that my parents had to use a donor to deal with multiple miscarriages and infertility, and feel somewhat helpless about it all. But that’s all. No more anger. No searching. It is what it is and does not change who I am now. All of our responses are personal and valid. Thanks for sharing!

  6. Dr. Lewis, I can’t imagine what your experience has been like for you. Thank you for sharing. Yours is the most objective piece I have read so far on the subject; you clearly understand what is at stake for everyone involved. Our family has a bit of a different experience, but we are still in the thick of it after discovering (through another family member’s use of Ancestry.com) that my husband helped create a child/now adult from a one-night stand 30 years ago. Though his bio-daughter continues to be mindful of the impact on our family– she put the ball in our court for what any relationship would look like — it is still very difficult. Our marriage is just not equipped to deal with this. I wonder if any marriage is. We are good, ethical people, so we feel we can’t walk away, but we have two preteen daughters who are also struggling — suddenly there’s this other person that belongs to their “daddy” too (in the biological sense) and she is keenly interested in him. And her hope is to have an extended family-like relationship with all of us. My husband clearly struggles with a lot of guilt; that he created a human being he knew nothing about; that her bio-mom suffered the trauma of teen pregnancy and relinquishment; that a youthful indiscretion has caused so much upheaval in his own family, etc. I think he is overcome by the responsibility of the decision that is ultimately his own, but it continues to cause a lot of stress for many people. As far as your statement that DNA findings can devastate families, I couldn’t agree more. I am hoping it won’t totally devastate ours. Now that the initial excitement/shock has cooled some, I am hoping that with more time we’ll have better perspective, more healing for all involved and the right path will become clear for us. Thanks again.

  7. Thank you so much for sharing, Nicole. One of the frustrating things is that I can’t possibly be objective about any of this, and it seems new things occur to me on a daily basis. So many people are involved, over so much time, from one event. I hope that we can all work our way towards accepting what has happened and moving forward. Thanks again.

  8. I “get” where you’re coming from about searching . . . and there are certainly a wide range of views. A sister and three of my cousins were adopted through closed adoptions, as I was; we grew up together and we’re very close, yet no two of us have made the same decisions for the same reasons. Thanks for sharing the title/author. I will watch for that book.

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