DNA Data and Unexpected Things

What 23andMe does not tell you

Oct 15, 2024

A single red poppy growing out of an ancient stone pathway

So you want to know the secrets of your DNA. Consumer DNA tests are all the rage, or at least they were – 23andMe’s financial problems may be an indication of a downward spiral in the industry. First used as a tool for genealogists and then lay people interested in filling out their family tree, they now appeal to the curiosity of many.

DNA tests are like those magazine personality quizzes, except science-based. You know the ones – they tell you your preferred style of home décor, your “type” of romantic partner, or what kind of cookie you would be, were you to be a cookie and not a human. We humans want to know what makes us tick. For a DNA test, instead of answering a list of questions about your favoured furniture arrangement, what you like in a person, or if you prefer raisins or chocolate chips, you just spit in a tube and send your DNA-containing saliva through the mail for processing, and then you wait. The company analyzes it, prepares a report, and emails you the results within a few weeks. Unlike magazine quiz results that score your chosen answers (and can be manipulated by changing those answers), the company’s report will tell you information about yourself on a molecular level, with 99.9 something percent accuracy. Your genetic code, the building blocks of your very existence, forever in a database with millions of other people’s genetic codes, spilling the secrets of your bodies.

For most people sending their sputum to 23andMe, the DNA analysis might reveal fun facts like your odds of disliking cilantro, your earwax type (yes, really!), or your likelihood of stretchmarks. It will also reveal the composition of your genetic ancestry, including your percentage of Neanderthal DNA. The analysis will tell you where your ancestors lived throughout history, in some cases quite specifically, like which quadrant of England or region of Moldova. If you opt in to the DNA relative finder, you’ll discover other people in the company’s database who share your DNA, from close to very distant relatives. Maybe your favourite uncle has always claimed Jennifer Aniston is a distant relative. Now’s your chance to find out – if Jennifer Aniston also did the test and is looking for distant relatives (unlikely).

For a small, but not insignificant percentage of people, these tests are anything but fun. Buried under the “Legal” section at the bottom of 23andMe’s website, is a link called “Family Considerations.” Click on this link and it takes you to a page titled, “What Unexpected Things Might I Learn From 23andMe?” What might you learn? If you pay extra for 23andMe’s health analysis, you may discover you have a high chance of developing a specific disease, or that you carry the genetic variants for a life-threatening condition. This means even if you yourself do not have the condition, you could pass it to your offspring. Such information can be used to help you make lifestyle choices, or to present to your doctor for follow-up (if you have a family doctor and/or the means to pay for preventative healthcare).

You could also learn you have a different ancestral history than what you thought – maybe your ancestors lived in Ireland and Scotland, and not England as told in old family stories, or maybe you discover some of your genes can be traced back to a country unfamiliar to you. Most shocking, you may find close biological relationships to family previously unknown to you (e.g., brothers and sisters) and vice versa – you may find that someone you thought was a biological relative does not actually share any of your DNA. As 23andMe reports rather matter-of-factly, “This happens most frequently in the case of paternity, where someone learns that their biological father is not who they thought it was.”

These ‘unexpected things’ your DNA analysis might reveal could also affect other people in your life. You may find yourself in a position of having to decide whether to tell (and/or whom to tell) what your DNA test uncovered about them. For example, an unknown person may be identified as a close biological relative, such as a grandparent, which would mean one of your parents has a biological parent they did not know about, a situation not as uncommon as you might think. This means you don’t even have to do a DNA test for your life to be changed by one. That’s what happened to me. Best we all be prepared!

My DNA shock occurred when my eldest child, unbeknownst to me, did a 23andMe DNA test for fun. Half of their DNA perfectly matched what was known about their father’s ancestry, whereas the other half did not match what they knew about my ancestry. An innocent question texted to me about our family background resulted in a complete upheaval of my life within the hour. 23andMe had identified “30% Italian” ancestry in their genes, which meant my genes were 50% Italian, yet my parents’ ancestral background was British, Scottish, and Irish. And thus began the discovery of my birth mother’s 50 year secret and a complete shake-up of my identity.

This means you don’t even have to do a DNA test for your life to be changed by one. That’s what happened to me.

Considering these “unexpected things” can be traumatic and life-changing, I’d like to see this information in big bold letters in a prominent position on 23andMe’s homepage. I know, it’s naïve to think a company would advertise the risks of what they are selling. But even if the possibility of an identity switcheroo was presented bolded in all caps in the middle of the page, no disclaimer can prepare someone for discovering that one (or two) of their parents is not their biological parent. Disclaimer or not, most people think it won’t happen to them. Now, if you resemble both your parents in body shape, mannerisms, voice, personality, and you look like your siblings (if you have siblings), you might be pretty secure in your expectation that it won’t happen to you. But even if at some point in your life you thought maybe there was a chance your dad might not be your biological father, it would still be quite the shock to discover those passing suspicions were true.

When my kid presented me with their weird DNA results, it never crossed my mind that it was because I had no genetic link to my dad, even though, in retrospect, there were clues throughout my life. My partner silently watched us running through various improbable scenarios for a very long 45 minutes before he gently suggested I consider another explanation – my dad was not my biological father.

I am not alone in my experience of discovering mis-attributed parentage through DNA analysis. It is estimated that up to 5% of people are just as shocked with what their DNA tells them about their genetic identity. To mitigate these unexpected discoveries, in addition to the information about unexpected results 23andMe provides for legal purposes, they share customer stories that put a positive slant on such findings. A quick read through of the stories would lead you to think unexpected results are ultimately wonderful discoveries benevolently facilitated by 23andMe.

One example, strategically titled “A Need to Know,” recounts Robin’s and her family’s shock upon discovering her dad was not her biological father, while reiterating that her family managed the news well. So well, that her dad (who had not lived with her and her mother growing up) encouraged her to find her father to get answers to her questions. The story tells potential customers that despite the shock, “it didn’t tear them apart,” and, “While the news was hard to accept, it didn’t devastate the family.” They repeat this rhetoric to counter the fact these results do indeed devastate many families – but 23andMe does not share those stories of devastation.

The way the story was crafted, particularly Robin’s ending quote, makes it read like she had been searching for her biological father all along, “I not only found my biological father but I was introduced to extended family and ancestors that I hadn’t known of before,” said Robin. “Finding him and knowing about his family tree through our cousins made me feel complete and whole.” Robin’s story effectively takes an emotionally charged and nuanced situation and turns it into a feel-good story to promote 23andMe.

Another example, “An Only Child’s DNA Surprise,” is Kayla’s story of discovering she was donor-conceived and had over 70 siblings. The story describes how “jarring” it was for Kayla to meet so many strangers who resembled her, and how challenging it was to have difficult conversations. But the story swiftly shifts to how those challenges were overcome, ending with, “My life will never be the same after this experience, in the best way, and it’s all thanks to this little test,” Kayla said. “I absolutely prefer the truth over anything falsified. Ultimately, I love learning more about myself and discovering new things, progressing to knowing who I am and where I come from.” Another quick, feel-good story serving as an advertisement, rather than representing the whole of Kayla’s experience.

The most explicit advertisement in the guise of a story is, “Best Father’s Day Gift Ever,” which makes a not-so-subtle recommendation that these DNA testing kits are great Father’s Day gifts. However, Father’s Day tends to be a tricky, often triggering, time for people who have discovered the man known to them as their dad is not their biological father. Yet, 23andMe ironically suggests their DNA testing kits would make the best Father’s Day gift. What better gift to give your dad than a gift that will tell him you’re not his biological child? Sheesh.

Of course 23andMe presents the least harmful outcomes; they are trying to sell you their service, not scare you away from using it.

So while the stories do acknowledge the ‘shock’ and ‘difficulty,’ they all end with customers being happy with the results, with families being supportive, and with no harmful repercussions – all families can withstand the fallout of this news, and in the end, it’s best for everyone! Of course 23andMe presents the least harmful outcomes; they are trying to sell you their service, not scare you away from using it.

Here is a compilation of what may happen when you find out a parent isn’t your biological parent – things 23andMe does not tell you:

In an instant and often lasting for many months, your sense of reality, what you “know” to be true about your life becomes unreal. You become unknown and sometimes unrecognizable to yourself. I couldn’t look in a mirror, or at my own kids, without the jolt of seeing strangers’ features in our faces and coming to terms with what that meant about my life and my identity.
If your parents are no longer living, you may be left with unanswered questions. This new knowledge may leave you feeling confused and angry with parents and family who are no longer around to help you make sense of things.
If your parents are alive, you may still be left with unanswered questions. Many mothers, when confronted with questions based on DNA evidence, will deny the undisputable scientific truth, so deeply entrenched are they in that long-ago shame. Thankfully, my birth mother confirmed the results so I was spared the gaslighting. However, she has given me minimal information and some of what she’s told me in response to my questions have been lies.
You will need to decide if or how to broach the subject with the parents who raised you. How will you tell your mother? What questions will you ask? Will you tell your dad (i.e., the man you thought was your father)? In the case of a sperm donor situation, it’s possible both parents knew all along, or at least suspected. Or, maybe your mother knew or suspected the possibility, but never told your dad. There is a lot to consider when making these decisions and everyone’s family situation is different. What if there was infidelity, or sexual abuse? Could this news affect your parents’ marriage? Or could it explain their past separation or marital strain? In my case, my birth mother left me to be raised by my dad when I was a baby, so I didn’t have to consider how it might affect their relationship – it had already been affected the moment she became pregnant. Maybe you decide to do nothing with the information and just keep it to yourself, but I don’t know of anyone who has done nothing – this is not the sort of knowledge that is easily forgotten.
You no longer know who to trust. When information about your identity is kept from you (in my case for 50 years), only discovered via DNA, you feel immense betrayal. I think this would have been harder for me had my birth mother not already abandoned me as an infant. When your family lies to you about your own identity for your entire life, trust is obliterated.
You go through stages of grief, and the process can take years. I lost the biological connection to my dad and my (half)sisters, my known heritage, and my sense of self. The gut-punch grief has lessened, but it will always be with me.
You may revisit key moments of your life from different perspectives. Memories take on new meaning when you rethink them through the lens of what your mother knew, what her siblings knew, what your second cousin knew – what you didn’t know. I questioned if everyone knew who my father was except me, and I perceived my younger self through their eyes.
Your relationship with your family, or at least some family members, will change, even if everyone agrees that nothing will change. This is inevitable as each person reacts to the news in different ways, and especially if you no longer trust them. You can’t put the DNA discovery back in the spit-tube.
You need to decide if you will search for and reach out to the newly discovered family. Do you want to meet your birth father? Is he still alive? Do you have half siblings and do you want to meet them? Aunts, uncles, cousins? Sometimes you’re not the one to decide, because the discovery happens when a half sibling or other relative reaches out to you first. I did find my birth father. I’ve met him, two half-sisters and three aunts. It’s all very surreal.
You may be rejected by the new DNA family. I’m thankful my DNA family showed interest in meeting me, because others don’t have that experience – again, everyone’s story is different. Some half siblings don’t want to think about how their father had another kid as a result of an affair. Some birth fathers want nothing to do with these unexpected children, especially if conceived while they were married to their current partner – they might want to keep you their dirty little secret. Sperm donors might have no interest in meeting all their biological children. It is not always a happy ending.

One thing is certain, your life will never be the same again.

Two and a half years in, the truth is, even though I struggled immensely the first year, even though my family relationships are a mess (some were before anyway!), and even though I still feel lost to reality sometimes, I’m glad I found out the truth. I have new information explaining a health issue no one else in my family experiences, while being released from fear of other health issues no longer part of my health history. I’ve met people that share a resemblance with me and my children – our facial features, body shape, and even voice qualities. Witnessing my mannerisms, the way my brain works, the way I think, mirrored in these new biological relatives has helped me feel more at ease with myself – I’m no longer the misfit in my family. Ok, well, I’m still the misfit in my family, but at least now I have an explanation.

For the first time in my life, I feel a connection to a homeland, but I also grieve 50 years of Italian culture and time with biological relatives, while also grieving the biological connection to my dad and sisters I grew up with. Discovering my genes were half Italian, that my birth father was born in Italy, prompted me to visit Italy for the first time. Italy is a beautiful country with a beautiful language and genuine people. I’d retire there if I could! I’ve visited my ancestral home in Abruzzo. I’m learning Italian. I have a newfound appreciation for good pasta and pizza. And I understand my desire for clean, simple eating with fresh ingredients is in my DNA.

If you are presented with unexpected things in your DNA, all may work out for the best in the end, but I know other people who wish they had never found out. The DNA companies don’t want you to know all the ramifications that may give you pause*.

Would you have your DNA analyzed by 23andMe or a similar company? How would you prepare for unexpected things? If you’ve already tested your DNA, did you uncover unexpected things in the analysis – how did you handle it? What would you like people to know about your experience? Please share and comment!

Write Out of Hiding

Discussion about this post