Upsides and Downsides of the DNA Revolution

Book review: The Lost Family, by Libby Copeland (Amazon / Book Depository)

I could not help but think… that spitting into a vial in search of family was like spinning a roulette wheel, with no ability to predict the outcome in advance, and the highest of stakes.

One of the most rapidly changing branches of science and medicine today is around genetics, in part fuelled by the popularity of at-home consumer DNA testing. The genomic era presents unique challenges alongside unique opportunities – for understanding who we are, where we came from, why we behave as we do, how to heal our illnesses or avoid them in the first place, for solving crimes and connecting with family we didn’t know we had.

In The Lost Family, journalist Libby Copeland, who specializes in culture, science, and human behavior, looks at the people who have lately become “seekers”– the term used for takers of commercial DNA tests who became obsessed with what their genetic information means and where it leads. It’s apparently a very easy rabbit hole to fall into. Many of the 400 people she interviewed either got test results they weren’t expecting, leading to uncomfortable but illuminating conversations about paternity, or were adopted, sometimes abandoned, at birth and curious about their biological families.

The truth gets even more uncomfortable, as it’s not always a simple, perhaps best-case scenario of a long-ago affair at the root of these genetic mysteries. Incest is horrifyingly rampant, perhaps the most disturbing thing I learned here. As is rape, and a lot, A LOT of shame, plus some less-than-successful family reunions that lead to more pain in an already frequently painful, and emotionally confusing, process. There are some tough issues to sit with in the personal stories.

Running throughout the book, breaking up chapters where Copeland lays out the advancing scientific and medical sides of genetic testing and what DNA is increasingly being used for, is the story of Alice Collins Plebuch, a grandma who took an at-home DNA test and got surprising results, revealing that her family’s genetic profile didn’t stem from anywhere near the region they’d always thought it did.

Alice first took an AncestryDNA test in 2012, and in the years before the perplexing mystery of her father’s heritage would be solved with a 23AndMe breakthrough in 2015, DNA testing and the database of people participating had both expanded by leaps and bounds. Alice became a dogged detective, enlisting family members’ help and ultimately, satisfyingly, finding the near-soap operatic conclusion to a mystery her father hadn’t even known he was a part of.

Copeland also thoroughly explores the uniquely American aspect of this DNA obsession, visiting the Family History Library in Salt Lake City, the world’s largest genealogical library, and touching on cultural elements that explain why consumer testing has taken off in America like nowhere else:

It’s precisely because Americans are so divorced from our histories — because we lack the continuity and the ancestral knowledge that comes from generations living in the same place, in a largely homogeneous nation — that many of us wonder where we came from. We are intrigued by our roots, curious about all the things that took place before our ancestors traveled across the ocean, or across the American continent, and settled here. We want to know the specific bits and pieces that make us us.

Copeland hits all the big talking points that have arisen as consumer DNA testing has exploded in popularity, and the arguments for its importance both in establishing historical truths and records as well as understanding our medical backgrounds and preparing for our futures health-wise are manifold. But so is the worry about the intrusion of big data, and what this new field of technology can mean for our privacy, relationships, or health insurance coverage.

“[Journalist Kristin V. Brown] was fascinated by a concept from Georgetown Law Review’s Paul Ohm, that we are all at the mercy of the massive troves of data that businesses collect and keep on us, and that somewhere amid all that information, every one of us has a devastating secret.” Ohm called it the “database of ruin” and begged for it not to be built. Sit with that thought. Do you have a devastating secret, or three, that you don’t want slipping out into the world? Every topic here leaves you with a lot to mull over, much of which is glossed over in the celebrity-filled commercials and TV shows promoting DNA testing.

“Is more information better? Is it always empowering? Information carries its own burden, which is that once you know something, you have to figure out what to do with it.” That goes not only for things like paternity, but for uncomfortable health-related truths, like knowing that you have elevated risk for certain incurable diseases. And like the quote at the beginning illustrates, not every family reunion is what seekers hoped for. This paves the way for meaningful discussions about what really constitutes family and love, and even that fundamental yet intangible question of who we are.

These are conversations worth having, and Copeland explores thorny issues through her interview subjects’ experiences with an incredible amount of sensitivity and nuance. She drives home how much emotional baggage is tied to all of this.

Part of what interested me in talking to seekers was the question of how they processed the pain of the past: the unfinished business, the unanswered questions, the unresolved anger and shame and resentment and grief. And how did they make sense of lives with huge people-shaped holes in them? So often, the secrets themselves loom as a kind of negative space in those timelines: the teenage girl who went away for months, or the father who disappeared, the relatives whose names are listed together on a ship’s manifest, yet for some reason scattered in the new country. With the truth written into visibly overlapping DNA segments in commercial databases, we are all now left to make something of those negative spaces.

I love that idea, or image, of these massive truths about who we are and where we came from as negative spaces. Copeland is an outstanding writer, able to distill complex ideas while emphasizing the philosophical and moral and ethical issues in an accessible, beautifully written way. More than anything, this gives so much to think about. The postgenomic era is an almost incomprehensibly fast-changing landscape, and one that will carry immense ethical and medical weight in the future. Must-read here.

The Lost Family: How DNA Testing is Upending Who We Are
by Libby Copeland
published March 3, 2020 by Abrams

I received an advance copy courtesy of the publisher for unbiased review.

Amazon / Book Depository

25 thoughts on “Upsides and Downsides of the DNA Revolution

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  1. Fascinating conversation! I have intimate knowledge of this as I took the Ancestry DNA test December 2018 and discovered a half sister. My reasons for doing the test were multiple and one was a sense of foreboding that I might have an Asian half sibling as my father spent years in Southeast Asia alone. However, my sister isn’t Asian, born in one of the US stations during a turbulent time in my family (he returned from Vietnam with what we now know is PTSD). The marriage recovered and I’m 100% certain he was unaware of this child.

    I also was trying to learn more about my father’s side of the family. We knew his maternal side but not my paternal grandfather’s. I accomplished that with a lot of help from the Family History database. I now know all that I was hoping to learn and so much more. I also learned a lot of family secrets but I was prepared for that, too (that generation was notorious for taking these secrets to the grave).

    My experience was a really good one, primarily because I waited until both my parents were deceased (the theory being if they wanted to tell me, they would have) and was prepared for the unexpected. My new sister is a blessing! She’s the spitting image of my older sister, who has always lamented that she didn’t look like anyone like I do (she’s a perfect genetic mix of my parents), and they both love that. My new younger sister (it was formerly just the two of us) is thrilled that she’s discovered who she is and since I’m known as the family historian in my extended family, have provided her with a rich history. We bonded quickly and met three months later. It’s a very happy story.

    My husband is a DNA expert and cautioned me about the other stuff provided to me with the DNA analysis. Until the databases are more highly populated with all cultures, the results will be limited by the degree of participation. There are risks involved, which you so eloquently outlined above and they should be considered before entering into this rabbit hole (I spent DAYS building our family tree, sifting through fascinating data). I went into it with eyes wide open and was prepared for the surprises I discovered.

    I know this is long but I wanted to give you feedback as I embarked on this journey. Thank you for featuring the topic.

    Liked by 2 people

    1. Jonetta, I got chills reading this!! What a story! I can’t believe you’ve had this experience. Although I guess I can, really, because it completely mirrors ones related here. You have GOT to read this one, I think you would find so much to enhance your own experience and give you more context and background for this journey you’ve had (although it sounds like, especially with your husband’s knowledge, you’ve already had plenty of that. I still think a lot of the data and stories would be interesting for you!) I’m so happy that it turned out the way it did for you and your family, and it sounds like you took all the right precautions and preparations, which seems really key here. Thank you so much for sharing, that was amazing to hear — and amazing that you found this sister and bonded with her like you guys did! Definitely a best-case scenario outcome for what this new technology is capable of.

      Liked by 1 person

      1. Thank you, Ren💜 I was hoping you’d give me some direction about this book so I’ll definitely try to get my hands on it. You are so dead on about taking the right precautions as it made a big difference in how I handled the outcome. And, I did homework on my sister before I reached out to her. Turns out we both worked for Fortune 50 banks, in the same type areas and had the same officer titles…yes, we are like two pod peas in how we think and operated. She has my older sisters sweet disposition. We’d make an excellent case study for behavioral analyses of siblings who were not multiples and not raised in the same environments.

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      2. That was a big eye opener for me here, and something the author repeatedly stressed. It seems so casual to spit in a vial or swab your cheek but there’s a lot you need to be prepared for that you may not have even considered. And it shed a lot of light on human nature and behavior in general, especially how attitudes are changing, like what you mention about the generation that took everything to the grave and that’s just how it was, end of story. It was fascinating to consider, as I think we’re in a time of much more transparency (perhaps a little out of necessity, perhaps having finally moved past the shame aspect).

        What a story, that’s so incredible that you ended up having so much in common. You need to get in touch with researchers or writers working in those areas, you two sound like an amazing case study! And really, you know I try to be balanced and not foist things on people but I really think you’d get so much out of this book.

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  2. This sounds a fascinating read that is going on my wishlist for sure. I have done the Ancestry test but they keep changing the results and have now removed all Iberian locations from me – however I know I have a Spanish great-great-grandfather from research my other family members have done. So I’m taking that bit with a pinch of salt, while being interested in the other connections people find.

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    1. That was another interesting aspect, if they don’t have enough DNA from one area your results won’t be as specific or accurate and they can get more specific over time. You do have to take some of it with a pinch of salt, or compare it across companies that have different databases. I think you’d really like this one!

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  3. Great review! I’m glad to hear the book looks at the data/capitalist side of this topic and not just human interest, though that sounds fascinating too. This is firmly on my TBR list and I can’t wait to get to it.

    Liked by 1 person

    1. It really covered more aspects than I even considered connected to the topic. The financial ramifications were very intriguing, like about who’s profiting off all of this and how, and how much do people understand about what their most personal data is being used for. Can’t wait to hear your thoughts on it!

      Liked by 1 person

    1. My aunt did one and it was the same, kind of bland and everything we knew already. I haven’t been all that interested in doing one myself because we have a lot of documentation for where we came from on both my parents’ sides and I look exactly like both of them. Kind of takes the mystery and excitement out of it!

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    1. Me either, but maybe we are the minority. My family’s messiness is pretty much all out in the open, we have lots of documentation for where we came from on both sides so I’m not sure what surprises could be there, and I look like a computer simulation of what the offspring of my parents would look like. But who knows, maybe that’s why it’s so appealing. People think like this and then get a surprise.

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  4. Great review! This book really does sound incredible, I definitely want to pick it up as soon as possible. I’m going to be a bit busy with the women’s prize now, but I will keep my eye out for a copy in the meantime! I really like that Copeland covers this topic in so much depth, explaining what “seekers” are looking for and what some of the benefits can be before tackling the issues- and at such depth! I’ve been considering trying the Ancestry DNA test, and it sounds like this is an absolute must-read before deciding on that, even though my family is pretty good at keeping records and keeping everyone in touch so I think I have a fair idea of what would be revealed. Then again- I suppose most people think so!

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  5. What an amazing review!!! I have long thought that Americans were uniquely obsessed with ancestry and the reasons you quote make perfect sense.

    I think of these DNA tests from a criminal law perspective probably far too much. How we are catching cold case criminals from a relative’s use of the test and I wonder about the privacy laws that will follow.

    I will absolutely have to add this to my TBR!

    Liked by 1 person

    1. Thank you!! It seemed that way to me too, that this American obsession with it was very unique and although I could guess around the reasoning with our immigration background it was very interesting to get the details she came up with.

      You absolutely must read this one, the parts about how it’s being used in criminal cases is SO fascinating and really a murkier legal / ethical area than what I realized. It’s also a kind of Wild West at the moment, where we’re still figuring it out and ensuring the proper laws around it are in place. There are going to have to be massive legal changes in this area going forward too. Would love to hear what you think of it!!

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  6. These DNA ancestry tests make me nervous because, as I understand it, the profit in the business is not in providing the ancestry service but in selling on the personal data to third parties such as insurance companies which, for example, can use data on health risks to hike up or refuse insurance – which can have serious financial repercussions. There is a danger that when signing up for the service, you give permission in the small print for the ancestry company to store and sell on, the DNA testing results.(Unless you opt out by ticking a box on a form stored in a basement in Aberdeen guarded by a tiger…) I do not want even more personal data about me stored and trafficked – there is enough of that already! Also a very personal thing, but I am not interested where I come from: I would love to think I am descended from White Russians and French Huguenots with a dash of Castilian nobility but I know full well that I am Anglo-Saxon peasant mixed with a badger and a tree stump. My husband claims he has Viking blood but he does not have a helmet with horns or a longboat so I am not buying it. 😉

    Liked by 1 person

    1. That was a big point that she covered here and was really interesting because people will click through anything without reading it carefully and then they have your data with those serious repercussions that you may not even realize. It’s such a fast-developing area too that I think we don’t even know yet what all of those repercussions can be, but the denial of health insurance or raising those costs is absolutely terrifying. Especially with our bullshit system in the US already!

      Liked by 1 person

  7. What an absolutely fascinating book! I have always been interested in the legal ramifications of DNA research because it is a new frontier and seventh grade science made me fascinated by the burgeoning field. I do know a lot about one branch of my family but not much about the other three. I have been interested in doing a dna test but have been in no rush because it doesn’t really factor much into how I see myself as a person. Idle curiosity really. A cousin did take a dna test recently and learned her dad is the product of an affair. She wasn’t pleased and is struggling with the information. All she was looking for was how much german she was. It is a family secret and we are not really sure who knows what. Our grandmother is still alive but no one has had the guts to ask her outright. As for me I have had to have a couple of DNA tests for health related issues in terms of genetic markers and such. The results were very promising but I take it with a grain of salt. The technology is too new to be an definitive solution. I do hope that as the science progresses, the research will lead to cures for some of my problems. But there is no guarantee it will happen in my life time or even work for me. I will certainly be reading this book.
    x The Captain

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    1. Oh wow..that’s such a crazy story, and if I hadn’t this it would seem even more like an extreme example, but the craziest part is how many people seem to have had similar experiences! And when you’re not expecting something like that, so going into the testing without a mystery to solve, it can be very disruptive and world-changing, really.

      You’re absolutely right to take things with a grain of salt. It’s come far but is still very much a developing field. It’s something to consider as part of the bigger, more comprehensive picture, I think.

      I wonder if this book I just read that’s coming out in a couple of weeks, The Lady’s Handbook for Her Mysterious Illness, would be helpful for you to read. It hit on a lot of the health problems I’ve had/continue to have and was eerie, actually, in the points she made and connections found between some of them. Not sure what all you’ve had to confront in this area but there was so much that was helpful and promising there, for me at least, and it might be worth you looking into! ❤

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  8. A fascinating review. I’m deep into Ancestry.com but have no desire to do the DNA test as I research family history for the book I am writing. The most interesting part of the “seeker story” is the degree to which nature trumps nurture as in Jonetta’s comments above. I have a hunch that we Americans are biased toward environment being more important than genes — the “can do” American spirit, blah blah blah, but I’m really coming to think that genes are at least as important. And that is a tricky subject, because one doesn’t want to veer into determinism or eugenics type thinking! I’m struggling with the balance in my own thinking.

    Liked by 1 person

    1. I agree, the can do attitude can even be damaging when you *can’t* do something and can’t allow yourself to take any other factors into consideration for why something may not be working or possible. It definitely is a tricky subject, but I think finding a balance is what’s crucial. This might be a good one for you, especially considering your research! I found the author was very careful to consider all sides of a question or issue and tied it so well into the points she was exploring.

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