The New Family Tree
I once went to a conference where they handed out 23andMe kits to every attendee. I gave mine away when I got home. I have no desire to do a genetic test, even though I do have a desire to get the results. I know, that doesn’t really make sense. But what I mean is that if there was a way to get the information without it passing through a company, I would do it in a heartbeat.
But because the information goes through 23andMe or gets added to a database on Ancestry.com, I’m not keen to participate. I don’t think we have any big family secrets, but I’m going to guess that all of the other people in this article also would have said that before taking the test.
Dozens of reports have emerged of people discovering via genetic testing that they were conceived by a sperm or egg donor, or that their parents had secret affairs. Some have found and connected with half siblings or even met the donors responsible for their conception … Decades ago, no one ever imagined that family secrets like these would ever be revealed by science.
It’s one thing when you go into genetic testing seeking information. It’s another to think you have the information and discover that you were lied to at some point, usually by someone who loved you. And that’s before we get to the heart of the matter: that these tests ask you to give a company with a very lax privacy policy a lot of data. I don’t even use my fingerprint to unlock my phone. I really don’t want to hand 23andMe my DNA.
I know a lot of people find the tests fascinating, and I do, too. Really, if I could run the rest at home and keep the results in my house, I would do it. I’m even jealous when people talk about getting their results and having all of that information. But then articles like the one above pop up.
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I’m a little glad someone else is in this boat, because people keep giving me weird looks when I say that I don’t really want to give this information up to these companies. I was reading a bit about police searches and such using these databases and it feels like there’s a lot of ways the information could be used or misused once it’s out there.
And while I have zero reason to suspect anything, I also have been reading the articles and books by/about people who got surprises. I recently read Dani Shapiro’s book and was considering what I’d do if I found unexpected information in my family tree…and I realized that at this point in my life, I would not want to deal with that particular Pandora’s box. If there’s some big secret lurking, I really don’t want to know right now – and I probably won’t be okay with doing the DNA testing until/unless I get to the point where I could accept the risk, however small, that something might come up.
I would be fascinated to find family secrets – but they’re likely to be on my mom’s side and not my dad’s, because that’s what all the stories indicate. Everyone already expects there were shenanigans going on in my grandfather’s family. On my dad’s side, the genetics express themselves in our faces, so it’s clear that my sisters, my cousins, and I all share some genes.
But, as I work in a crime lab, I am already angry that I was required (after 20 years of not having to do so) to put my DNA on file in case of contamination of samples. There is no way I would give anyone else that information, especially since we don’t yet know what all of that stuff means. Am I telling insurance companies what it’s going to cost to insure me? Am I going to get caught up in some criminal investigation, due to bad testing or some other mistake? Hard pass. And every time someone mentions that they’re thinking of using one of them services, I advise against it.
I have no desire, either. Honestly, I’ve tracked our family tree the old fashioned way to the point where we know where everyone came from before they were in the US. (Including ship manifests in some cases.) That’s enough for me.
I did recently discover an online friend is actually a second cousin (small world indeed!) and some ugly family secrets came out of that. We’ve been comparing family pictures and other info and genetics sure is crazy .. but I don’t need a company to tell me that.
I had been thinking about this a while back when we found out some crazy info about my paternal grandfather through old records and documents. I personally wasn’t considering doing a test, but I thought about what potential results (on anyone in my family) might mean. And I think that if anything were to come from it, it wouldn’t be discrepancies in our immediate family history, which would only lead to more questions and potential heartache (to be dramatic, if we discovered some big secret), as there is no one left to answer questions or provide any clarity. And it wouldn’t be like meting long-lost or secret relatives, because everyone past parents on both sides have all passed away. So it wouldn’t do any real good to know things that dna might provide.
We did, however, just use a Wisdom Panel DNA on our newest dog. Just the breed info part, not the genetic disease workup. Since she is a puppy, the info is good to know in helping us train her best and play to her genetic strengths. Plus, it was just really super cool to find out what breeds she is made up of, since she didn’t completely look like any one breed. I definitely would do this on any future pups we get just because it’s so interesting to find out.
I’m glad to hear there’s someone else out there who feels like I do. I’m not comfortable giving that kind of information over with such lax regulation. And, I already am uncomfortable with the amount of information insurance companies have and can use against us. Imagine if they had access to our DNA and knew X has Y DNA for cancer or Z DNA for Alzheimers….nope, I don’t want that out there for corporations (a dirty word IMHO) to have control over. And, while I have a few ideas where secrets would be in my family tree, there is absolutely NO ONE I could talk to if I did discover something, so it would be like opening this mystery and having no solutions….so, no I’m not taking any of them either.
I did the test because it was the only way for me, an almost 60 year old adoptee, to find any information about my biological family. I hear all of you about wanting to leave family secrets buried and I understand your hesitation about what the data could be used for but I’ve spent my entire life feeling like an auxiliary member of everything and I wanted to know my biology before I died.
I found a full sister who knew nothing about me. She was surprised but thrilled. We have a relationship. I have a biological connection.
Anyone reading this blog has a passing relationship, somehow, with the potential for adoption and so it surprises me that it doesn’t feel like either Mel or the commenters saw it from this side at all. The unacknowledged truth of adoption is that, even as each party gains something, each party also loses something. For me and for my biological family a DNA test meant getting a little of that back. The members of my adoptive family who are still alive are happy to see me fill in some gaps. It also helped put some pieces together for my almost 20 year old IVF boy.
Sorry to be so critical–I have been reading your blog for years and love that it presents infertility from so many sides in such a thoughtful way.
I’m with you, Mel– Iwould love to know the connections and the info, but I don’t want to be “on file.” Especially with the genetic testing for health piece. My dad did that, and he wants me to do all of it, but I just don’t want to know if I’m harboring some gene I can’t do anything about. And I definitely don’t want some insurance company using that information to determine coverage. I hear what Jo is saying– these websites and services have been super helpful for those searching for information about biology in closed adoptions… I know several people who’ve used them that way, and they got some of the information they were missing. It is still a risk though to open up your detailed information to a corporation, and for me, the risk is greater than my curiosity. (Plus my family is full of skeletons that have already been unearthed in lower tech ways, for better or worse — those kinds of secrets don’t stay buried forever.)
Same here. As uch as I’m curious, I’m not curious enough for a corporation to know my composition and my lineage.
I got my genome done through a university study that has a very strict privacy policy then ran it through a 3rd party site that does not store your data. I am not interested in the 23 and me or other option like that either. I was able to confirm and identify that I have two MTHFR mutations. Oh, and I have low body odor and a fast caffeine metabolism. Yep, coulda told you that! There is a lot of info about cancer risk and various medications linked to certain genes, but I would need a professional to understand all of that.