Telling the Story of DNA: How Scientific Advances Affect Our Identity

“Science is very political. It’s always been very political.”

Alondra Nelson is the Dean of Social Science at Columbia University and award-winning author of multiple books that investigate the social implications of science and technology. Her most recent work, The Social Life of DNA: Race, Reparations, and Reconciliation After the Genome, delves into how genetic genealogy has affected African American communities and provided a new way to look at social issues. She recently joined Amy Harmon, Pulitzer-prize winning writer and correspondent for the New York Times, for a Heleo Conversation on science and society. They cover the importance of ancestry, the political responsibilities of scientists, and the future of gene editing in a quickly changing world.

This conversation has been edited and condensed. To view the full conversation, click the video below. 

https://www.facebook.com/heleoworld/videos/355203491511239/

Amy: When I met you, I was writing about the social implications of genetic technologies that were just beginning to come out of the laboratory. I was fascinated by this idea. I had written about the internet filtering into regular people’s lives in the ’90s, and then this was happening with DNA. I was talking to biologists and was looking desperately for people who were thinking about it in a sociological way, and you were the only one.

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Alondra: I started doing my research on genetic ancestry testing in 2003, so that might have been when we met. I’m a sociologist of science, but I’m also very interested in the history of scientific racism, and what science has meant for communities of color and African American communities in particular. When there started to be early stories about this new industry emerging in 2001-2002, some of these stories were about black roots-seeking. Could the answer to the roots mystery that African Americans have sought, long before even Alex Haley in the 1970s, be remedied or resolved by these tests? That was what drew me there, the intersection of my interest in both science and racial politics, racial inequality. That’s what put us on this parallel path 15 years ago.

Amy: Let’s talk a little bit about what you found. I think we both stumbled upon some similar things. One was the power that genetics seems to have in people’s sense of identity. I remember talking to people who were learning about their genealogy, and there wasn’t really that much that genetics told them.

Alondra: Especially in those days.

Amy: Maybe they had a little bit of such-and-such DNA, but they were willing to change their whole idea of who they were based on that.

Alondra: For many of the folks that I talked to, particularly people looking for African ancestral roots, it was something they had been looking for all their life. Of course it became really significant to them, but as I continued to spend time with these same people, it became clear that it’s one thing to say, “Oh, I know that I have some Guinean ancestry, or have a haplotype group that traces to West Central Africa,” or, “I have this Y chromosome in the patrilineage line that traces to Europe,” and it’s another thing to walk around in the world as someone who looks phenotypically white or African American.

“We do think DNA has this power in the world. We think it’s a data unlike any other, it has all these special properties. But then you get this information and I don’t know—what do you wear? A t-shirt that says, ‘I’m 10% European’?”

What became interesting was a kind of disjuncture, because we do think DNA has this power in the world. We think it’s a data unlike any other, it has all these special properties. But then you get this information and I don’t know—what do you wear? A t-shirt that says, “I’m 10% European”?

The interactions in the world make it so much more complicated. Although some of the interactions are with these new communities that are formed around these genetic marker identities. On the one hand, you walk out in the world and people don’t know what your genetic test is. On the other hand, you join a group of people who call themselves DNA Sierra Leoneans, or who have a certain genetic deletion disorder. New communities spur up that are catalyzed by these new genetic identities.

Amy: I have been thinking a lot about the double-edged power of DNA in recent weeks, with the rise of the alt-right. I’m really concerned about the way that genetics is bound to be used by these groups as they feel ascendant, and the distortions that will be made. I wonder what you think about the role of biologists and geneticists themselves, because I feel like they’ve been pretty absent from that conversation.

Alondra: About the alt-right in particular?

Amy: Yes, about the alt-right, but even before this moment. Absent from the conversation about how is their research being used or twisted? Is there a more appropriate role?

Alondra: Sure, there’s a really important role, for lots of reasons. Science is very political. It’s always been very political. One can understand why a scientist, a biologist, geneticist might want to eschew an explicit political position, but what sociologists of science, historians of science have long known is that these things are inherently political. It’s a red herring to say that they’re not.

You get this industry that’s unregulated, that emerges, and it’s not clear—should it be the purview of the FDA? What do we know? What do we do? There’s a really big role for scientists to play in regulating their own industry around transparency, around markers, around algorithms. That might not feel like capital-D Democratic politics, or capital-R Republican politics, but that’s a really important role of advocacy, particularly when the companies that do direct-to-consumer genetic testing hold all their algorithms and databases as a trade secret and don’t have to show them. People are making pretty profound changes in their lives based on this information.

Amy: I would like to see that more.

Alondra: You were the first journalist to write about this. I rely a lot on your work, framing the initial narratives that I was finding. What’s been so interesting about your trajectory is that you’ve gone from the work you did before the DNA age, then that whole series that wins the Pulitzer Prize, then to climate science and genetically modified foods. You’re still in some ways writing about genetics, but it’s become this bigger purview. How has that been?

Amy: I’m interested in intersections of science and society. DNA, in the late 2000s, was a big intersection. We were learning all this information that we couldn’t have known before, both about ancestry but also about disease predisposition. Did we want to know this? What should we do with that knowledge? There were all these different ways to explore that. Recently, I’ve written about genetically modified food.

Alondra: You got in a bit of trouble. There were people that were angry with you, yeah?

Amy: Yes. It got the biggest response because it was trying to challenge this liberal orthodoxy. Right now, we’re in this period where everyone’s saying, “Oh, these conservative Republicans, they’re science denialists.” Certainly in some senses that is true. But on the question of genetically modified food, I found that there was this denialism from the left. It was hard to write about that, in a way.

I think a lot about science communication, how to communicate ideas that are polarizing. What if we had a genetically-modified orange that would save the orange tree crop that is being decimated by a disease in Florida that has no cure? Would that be okay? Is that inherently bad? Science says that there’s no health danger to this kind of modification.

Alondra: In my recent book, The Social Life of DNA, I try to model your storytelling. Because I’m not a science writer. I had lots of stories about people’s identity and this transformation, but I also needed to be able to talk about the tests, what they are. The book required that you be able to tell people at a very basic level what autosomal genetic testing is, what mitochondrial DNA testing is, and it’s a real challenge to try to do that in a story-driven format. One of the people I write about is an African American geneticist who’s very telegenic and charismatic.

Amy: Rick Kittles.

Alondra: Yes. I often found myself quoting large block quotes, because there were times where I was like, “I can’t do it any better than that.”

Amy: Weaving the story together with the information is the huge challenge, but you did it beautifully. Part of your ability to tell these stories is because you went out and embedded yourself in these communities. Talk a little bit about the genealogy that you did.

Alondra: It was fascinating. Today, you could say, “I’m looking for 100 people who have done genetic ancestry testing.” In 2003, you couldn’t do that. I’m sure that you’ve spent a lot of shoe leather going out, finding people. I ended up in these very old-fashioned genealogy communities of people who were just doing regular, traditional genealogy. What I didn’t realize at the time is it became this interesting social experiment, because I had the early adopters that were switching from conventional to genetic genealogy. I got to watch that transformation.

“When it’s you, when it’s your neighbor, and the trail of that history is embodied in your very being, it makes it not only very present, but urgent in a different way.”

Probably, like you, I was not interested in genealogy per se as a pursuit for myself, but I became completely captivated by these communities of folks, who were deeply earnest about what they were trying to do, who were trying to accomplish historical things in the world. I would end up, in the course of following these genetic tests and how they circulated in black communities in particular, this class action suit for slavery reparations. In which, in 2004, three to four years into the industry, genetic ancestry testing is introduced as evidence to demonstrate African ancestry. I wish I could say I had a particular antenna for stories, but that’s just incredible.

Amy: Well, there’s a skill to being in the right place at the right time to find that story, too… One of points that you make is this hope that genetics brings. It can shine light on history that has been papered over, and that is sometimes hard to bring out into the open. Do you think it really is a good thing?

Alondra: I think it accomplishes it sometimes. We have an impulse in U.S. society to deny the history of racism and colonialism that brings this country into being. I think we spend a lot of time trying to act like that didn’t happen.

It’s one thing to say in the abstract that, “I am descended from slaves,” or, “Part of my genetics suggests that I’m descended from somebody who owned slaves,”—that’s a lot more specific than the broad stroke, “There was slavery 200 years ago.” People say, “It has nothing to do with me or you. Why are we even talking about this?” When it’s you, when it’s your neighbor, and the trail of that history is embodied in your very being, it makes it not only very present, but urgent in a different way.

Amy: It makes the history more specific.

Alondra: Absolutely. That conjunction of both the grand sweep and the individual is what makes history really powerful. The tests have that ability as well.

Amy: In this era of denialism, how does this play out?

Alondra: I’ve been trying to think about. Certainly, one of my takeaways when I was writing the book was that in the face of us trying to put our heads in the sand and have historical amnesia, these tests bring things forward. Now we’re in a situation in which we face just a total refusal on the part of some of our fellow citizens to even engage in a conversation, a refusal to even accept that racism, misogyny, exist in the world. Using genetics or not, if you can’t agree on a really basic level about the terms of engagement, I don’t know where we go from there.

Amy: I wanted to ask you about CRISPR. [With it,] we can essentially cut and paste new DNA into the genomes of lots of creatures that we never were able to do before, including potentially human embryos. The National Academy of Sciences invited you to be an expert panelist on this issue of guidelines around CRISPR, and the social implications. What did you tell them?

Alondra: I think they probably brought me in to talk about the forms of discrimination and inequality that are emerging with the potential to do this kind of work. If this works, and if we can do it in a way that’s not making large modifications to the human race, that’s not doing some kind of experiment that will go off the rails, what would it mean to do it equitably? How do you make the choices around what diseases you intervene in? Is it about who has the biggest patient population, or the most wealthy patient population? What if the population is marginalized or undeserving? How do we make decisions as a human community, as a society, around these things?

There’s lots to be said about people who think that their genetic mutation is perfectly fine. They have something that’s malignant, from a medical perspective, that is fine with them and their family. Whose decision is it to say, “We’re going to intervene on these particular mutations or make these kinds of changes?” When you go to DC, and to the National Academies, I was also struck that we’re still stuck talking about these kinds of major issues as nation states, when they are global issues. Who knows what you do about that? You tell sovereign countries that they can’t do X or Y?

Regardless of what we decide, there will be a few laboratories not only doing gene editing, but germline modification. That affects all of us potentially.

Amy: I’ve written a bit about this technology called gene drive, which is giving us the potential ability to change an entire species of animal. In this case, the Gates Foundation has poured about $75 million into developing a mosquito that, if released, would potentially be able to eliminate the mosquito that causes malaria. Their hope is to release it in countries in Africa where hundreds of thousands of children die every year of malaria. To your point about sovereignty, who gets to decide whether we’re going to eradicate an entire species of mosquito? Does everyone have to agree on the continent, in the world? I’m fascinated by these questions.