Recently, George Doe, clearly a pseudonym, a man with a PhD in Cell and Molecular Biology, a professional stem cell and reproductive biologist, related his story to Julia Belluz. Vox published the resulting article titled, “With Genetic Testing I Gave My Parents the Gift of a Divorce.” The original rather unflattering and somewhat derisory article by Julia is here, titled Genetic Testing Brings Families Together and Sometimes Tears Them Apart.
In these articles, Dr. Doe tells us that last year, in a class he was teaching, he used the 23andMe test to demonstrate how to collect a spit sample.
In fact, he was so excited that he bought kits for his parents as well:
“I had spent many years looking at the genes of other animals — particularly mice — but I never looked at my own. Because I was so excited about it, I got two 23andMe kits for my mom and dad as gifts. It’s a lot more fun when you can incorporate your family because you can trace not just the chromosomes but individual alleles on the chromosome so you don’t just see them, but where they came from. Also, I felt I had a good handle on my family’s medical history so I was very interested in confirming any susceptibility to cancers that I heard had run in my family, like colon cancer. I wanted to know if I had a genetic risk.”
But Dr. Doe found more than he anticipated. He found a half brother, an adoptee, sired by his father.
“When I saw that I share about 22 percent of my genome with a person, I thought, “That’s huge.” It took a bit of time to realize Thomas and I actually share the same genome with my father. This is how it happened: when you share around 25 percent genetic similarity with someone, that means that either it’s your grandfather, uncle, or half-sibling. 23andMe listed Thomas as a grandfather, which was confusing to me. I called my dad. All I had was his name, Thomas, and the fact that he’s male. I just asked my dad, “Does this name sound familiar?” He said no. He logged into his account, and Thomas wasn’t showing up at all. I was so confused. We figured out that at the very bottom of your profile, there’s a little box that says “check this box if you want to see close family members in this search program.”
Dad checked it, and Thomas’ name appeared in his list. 23andMe said dad was 50 percent related with Thomas and that he was a predicted son.”
Given Dr. Doe’s next comments, one can surmise that this child was not conceived before Dr. Does’ parents married, nor was Dr. Doe’s father a sperm donor.
“Years of repressed memories and emotions uncorked and resulted in tumultuous times that have torn my nuclear family apart. My parents divorced. No one is talking to my dad. We’re not anywhere close to being healed yet and I don’t know how long it will take to put the pieces back together.”
Correction Note: CeCe Moore provides information that Doe’s half-brother was conceived prior to the marriage, as reported by Belluz. However, we don’t know that the conception was outside of the time span of the relationship of the parents. CeCe also states that “both Neil Schwartzman and I were misquoted/misrepresented in the article. Neil says that he never told her it was a negative experience for him. (Some of my quotes have been changed – with no correction noted interestingly, but there is still some misrepresentation of our conversation.) So, this does make me wonder if Ms. Belluz got Doe’s story exactly right as well. Ms. Belluz clearly had an agenda and twisted the “truth” to support it.”
At this point, I felt really bad for the Doe family, and I still do. But Dr. Doe’s next paragraph bothered me when I first read it and it bothers me now.
Instead of laying the blame for this problem where it clearly resides, at the feet of his father, he is unhappy instead with the testing company, in this case, 23andMe.
“After this discovery was made, I went back to 23andMe and talked to them. I said, “I’m not sure all your customers realize that when they participate in your family finder program, they’re participating in what are essentially really advanced paternity tests.” People find out that their parents aren’t who they think they are. They have nearly a million people in the database. If there happens to be anyone in there you’re related to, they’ll find your match. This is a solid science.”
Dr. Doe goes onto say;
“I don’t want to say if I knew that I wouldn’t have participated. But I’m really devastated at the outcome. I wrestle with these emotions. I love my family. This is nothing I ever would have wished. My dream would be to introduce Thomas to dad, to incorporate a new family tradition, to merge families. We all get to broaden our horizons and live happily ever after. At least right now, that’s not what happened. I still hold out hope that in time we can resolve things. But I also worry that as these transitions happen there may have been some permanent emotional damage that may not be able to be undone.”
Dr. Doe goes on to say that 23andMe isn’t doing enough to protect the public from themselves, in essence. 23andMe did and does have a special box to click to indicate that you DO want to see close relatives. Most people have no idea that this box even exists, let alone that they need to click it. In fact, the mere fact that you have to click the box, and it’s not front and center, makes your results unreliable because you believe that you’re seeing all of your results, when you aren’t. He even describes how this option confused his father and his father could not see his children. His father isn’t the only one. This option has caused more panic among families that “should” match until someone explains this hidden “Opt In” option and where they have to click.
Now, I’ve been quiet all week, mulling this situation over. While I was mulling, 23andMe, who had previously announced that they were going to make seeing close relatives an “opt out” instead of an “opt in,” announced they had changed their mind. Coincidence? Doubtful. In fact, Vox, who published the original two articles also published 23andMe’s announcement and stated that the announcement was a result of their original articles.
I find this stance personally abhorrent. I believe that the people who test have the right to the truth – all of it – and not just if they happen to discover that all of their results are not being displayed. They are adults. They choose to take, or not take the test. If you take the test, you have every right to expect you’re seeing all of your results.
Dr. Doe, of all people, has absolutely no right to complain. He, of all people, a PhD in this field, knew exactly what he could discover. The problem is that the truth is sometimes inconvenient and ugly, especially if you don’t expect to discover that your father cheated on your mother, or vice versa.
Dr. Doe – the problem is not that 23andMe did not protect you from yourself. You, admittedly, clicked right through the options, believing of course, that it “couldn’t be me.” The problem is your family’s choices, perhaps then, and certainly now.
23andMe’s reversal on their policy will do nothing, absolutely nothing, to protect people like Dr. Doe from himself. The only policy that will do that is the French policy of making DNA testing illegal to “protect the family unit.” God forbid that we ever become that paranoid.
What 23andMe’s policy does it to continue to obscure the truth from unsuspecting testers. Unfortunately, even if they put a big red box dead center in the screen today that says “If you don’t click here, you won’t see close relatives including sons, daughters……,” many people will never see it, because many people never sign on again after receiving their initial results. In other words, many of their clients’ data would remain dark. The only way to solve that problem is to do what 23andMe announced they would do and were preparing to do, to shift the option from “Opt In” to “Opt Out,” until Dr. Doe created a publicity nightmare because he couldn’t handle the results of his own test, AFTER, he intentionally and with full knowledge, clicked the “Opt In” option.
Furthermore, Dr. Doe could have discovered the same thing if he had found his father’s old journals, for example. He could have discovered an old letter from a sweetheart. He could have found the letter telling his father that the child would be put up for adoption. What would he have done then? Who would he complain to that no one protected him from himself? The company that created the paper and the ink??? The post office because they might deliver a letter with disturbing information inside?
I don’t mean to be insensitive here, but it’s vastly unfair to make hundreds of thousands of people pay the price for Dr. Doe’s family issues. The timing of this article with the much anticipated 23andMe change has created the perfect media storm. Dr. Doe whined, loudly, and publicly, and 23andMe doesn’t want to create even more negative publicity.
If you think that I’m speaking from an ivory tower, or a vacuum, so to speak, I’m not. Let me explain about infidelity and betrayal. After my former husband’s massive stroke, when I was in my late 30s and he was in his late 40s, I found pictures of him with another female, with the sailboat that I bought him. Yep, he was on vacation, with another woman, while I was staying home and working. I felt terribly, horribly betrayed…not to mention gullible, stupid and naïve…oh yes, and angry.
I found those pictures a month or two after his stroke, when he was so terribly incapacitated that he couldn’t even speak, sit up, or eat, let alone answer any questions. Really, there was nothing he could have said anyway – the pictures, multiple pictures, over multiple summers….were all the evidence I needed. But I wanted them, I so wanted them to not be true. But they were. Staring back at me in living color.
The truth was ugly and painful and devastating. But it was also freeing. It freed me from the pain of loss of something I never had – a loving and loyal husband. I only thought I did. At the time it was horrifically painful. Today, I’m incredibly grateful that I didn’t spend my entire married life with a cheating, lying scoundrel.
I also know about infidelity within a family when we discovered that my half-brother through my father was not my father’s child. I lived through the pain of that too, and I can tell you that my brother, Dave, who wasn’t my biological brother, and I were far closer than many biological family members.
DNA does not tear families apart, people do. Infidelity does. Poor choices do.
My grandfather, about 1910, recently married to my grandmother, was present in his mother-in-law’s kitchen the day that a young man knocked on the back door. His mother-in-law, Nora Kirsch Lore had recently been widowed after being married to Curtis Benjamin “CB” Lore for more than 20 years. The young man asked for CB, by name. Nora asked him to come inside and figured he was one of the young men who had worked for CB in his construction and racehorse business. That’s not at all why the young man was looking for CB Lore. CB Lore, according to the young man’s mother, was his father. Let’s just say that it was a very awkward day in that kitchen as Nora asked the young man what year he was born.
In 1910, there was no way to prove, or disprove, this allegation. Today, there is – DNA. Nora too was devastated by her husband’s indiscretion, to put is softly, or outright betrayal to call it what it was. But she was not without a hint – he had always been somewhat of a playboy. Had she known specifically about this woman? No, but it didn’t entirely surprise her either. It only confirmed, or at least potentially confirmed, what she suspected happened when he traveled. It certainly was not this young man’s fault for showing up to find his father. Just like it isn’t DNA’s fault today.
Dr. Doe is not responsible for “outing” his father. His father obviously made his own choices. So did his mother.
Dr. Doe did not buy his parents a divorce, his parents did. Pure and simple. Their choice. Sounds like that divorce was, perhaps, years overdue.
What Dr. Doe gave his mother was possibly the gift of truth and freedom. Mrs. Doe obviously had the option of discussing things with her husband. She didn’t. Dr. Doe himself said it brought up repressed memories, and they obviously were not pleasant. This was only a festering scab and he, unfortunately, was the one who bumped up against it and knocked it off.
I’m glad Dr. Doe is getting help. I hope the entire family is getting help.
As I tell people, if you can’t stand the heat, get out of the kitchen. If you don’t want the truth, don’t DNA test. Period.
The culprit in this story is not Dr. Doe, is not 23andMe, but is very clearly Dr. Doe’s father’s original behavior combined with current family dynamics.
Sadly, the people that are ultimately paying the price for Dr. Does’ family turmoil are the hundreds of thousands of people that now continue to have their results obscured because of 23andMe’s abrupt change of policy.
That’s not right either.
23andMe lives and dies not on genetic genealogy or on the revenue from the tests themselves, but on their customers allowing them to use their results to compile for medical studies and to sell. If you want to make your feelings known, you can personally opt out of allowing 23andMe to utilize your results for those types of endeavors. In other words, 23andMe will no longer be able to make money from your DNA.
Perhaps 23andMe will hear and understand that message. Companies understand dollars.
To remove your consent for 23andMe to utilize your DNA, or to at least review the consent form, sign on and click on the down arrow beside your name.
Then click on “Privacy and Consent.”
Scroll down to the bottom of the page to “Basic Research Consent.” If you have given consent, this is what you will see.
Click in the green box on “view/change consent.” You will then see the consent document.
Scroll down again. You will see that the “give consent” box, in green, has been clicked already.
Underneath that box, click on the blue “click here to change your consent.” You will then see a green and a red box with your consent options.
You can see that I’ve selected “I am this person and I don’t give consent,” in the red box. Then click on the green “Save” button.
The change takes place imediately for any future projects or initiatives, but does not affect any studies or data sales that have previously taken place.
Furthermore, e-mail 23andMe’s Human Projects Administrator at hpa@23andMe.com and tell them why.
You have a voice in this matter. Use it.
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