Ed. Note: Alondra Nelson (@alondra) is an interdisciplinary social scientist who writes about science, technology and inequality. Her forthcoming book is The Social Life of DNA. In this interview we did via Skype, she talks about the implications of the expanding use of genetic analysis, touching on subjects such as the early Black Panthers’ use of community-based genetic screening for sickle cell anemia, the criminal justice system, and popular TV shows like Finding Your Roots and Who Do You Think You Are.
(PS: This edition of EM comes with a soundtrack. We asked Dr. Nelson what music the topics she is researching brought to mind for her, and she followed up with an email noting all the songs contained in this post, which will also be in our playlist.)
I wanted to ask you first about what you’re working on these days. I think you have a new book coming out.
My book The Social Life of DNA (@sociallifeofdna) is coming out next year with Beacon Press. “The social life of DNA” is both a methodological phrase and also an analytical or theoretical claim. The methodological use, you won’t be surprised to hear, comes from Arjun Appadurai and his edited collection The Social Life of Things, which was about material culture – much more material than the genetics ancestry testing that I follow in my work. Appadurai’s mandate is that scholars can understand social meaning, in part, by following things around. That important insight was from the late 1980s. And, then more proximate to us, about six or seven years ago Sarah Franklin and Celia Roberts wrote a book called Born and Made, which was on preimplantation genetic diagnosis, or PGD. In that book, they discussed what they called “the social life of PGD;” as ethnographers, they were in some regards following tests around and following users around. People who had done the diagnostic tests, and the various stakeholders who were involved in the tests…
I think what’s different about the way that I’m using [the social life of things model] is that there’s an ephemerality to genetics; you can’t see or follow necessarily with your eye — the gene or the genome. You can’t even really follow the genetic ancestry tests, which are often inferences about forms of identity: racial identity, ethnic identity. Increasingly, they’re inferences about health factors and the like. It’s harder to follow these around.
Interpreting genetic ancestry tests
In my earlier ethnographic work, I was trying to understand what people got out of the tests, because you’re basically sending cheek cells to a company in a FedEx package, and you get back pieces of paper that give you inferences about who you are. In some instances you’re getting sets of genetic markers written down on these pieces of paper, but the untrained eye doesn’t really know what to make of all of those As, C, G, and Ts. At any rate, these lists of genetic markers or “certificates of ancestry” that one receives are the outcome of the process. These artifacts aren’t always interesting in and of themselves. Far more interesting, I found, was the social life of the test results. I came to follow the way that these genetic ancestry tests came to be used in ways that we couldn’t necessarily anticipate.
Across different institutions, for example, we’re finding that even though the techniques are a little bit different, it’s the case that genetic testing that makes claims about the family is being used in places where we didn’t expect it. In the criminal justice arena there’s a new technique called familial searching, which comes out of the UK and was used in at least two high profile cases in the US: the BTK serial murder case, and also the Grim Sleeper case in Los Angeles. These are both serial murder cases, and these techniques were used to partially match DNA that had been found at crime scenes with family members. There was a partial match with relatives of suspects and an inference was made about who the crime suspect might be based on that. Ideas about genes and the family and about ancestry really have their center in genetic ancestry testing, but they kind of go all over the place…
In interviewing people about their use of genetic ancestry testing, they often could only talk about what the test meant to them, or the scientific authority of the test, by way of analogy to another form of genetic testing. It was often the case that I would ask, “Why do you trust this test company, or this particular scientist who came up with this technique and then created this genetic ancestry testing company?” And root-seekers would say things like “Well, it’s because I had to go to a genetic counselor and learn about cancer risk in my family, and do a pedigree around cancer risk in my family; this makes me more trusting of these genetic ancestry tests, I feel like I understand the genealogical tests better because of this medical experience.”
I also wrote in an ethnographic piece about a woman I spoke to who had used genetic ancestry testing, and who talked about her experience working as a technician in a forensic crime lab. And she said to me, “Well you know, the reason I can understand the logic of these tests is because I have this personal experience” — doing a very different kind of work, but also working on genetics in a broad sense. So the genetic ancestry tests have influences in other social domains. They influence the way people think about medical genetics, for example. Also, people have experiences with medical genetics that they bring to their understanding of other kinds of genetics in the world. So that’s one way of thinking about the social life of DNA as well. I write briefly about this in the introduction to my book.
The African Burial Ground Project
What is most manifest in The Social Life of DNA is the way that genetic ancestry testing gets used by African American consumers — and also African consumers to some extent — to make political claims. I follow how the tests began in the [New York] African Burial Ground Project. The tests of one company, a company I study called African Ancestry, and the origins of that company, lie in a scientific research project around the African Burial Ground in the 1990s. A young scientist named Rick Kittles working on that project went on to found African Ancestry. What’s interesting about that location of origin for this particular company’s tests, is that there’s a lot of community conversation and debate around whether or not genetic analysis and scientific analysis should be used on the remains.
In the 1990s we get local community activists in New York City, African American activists, saying “Well, we’re not sure. We recognize the past of scientific racism. We’re very much aware of eugenics, but we think there might be a window of opportunity, if we work with the right scientists and if we think about scientific ideas about identity not only being about kind of crass classification…” – the activists used the phrase “racial typologies” or “racial classification” – “and if we think more about ethnicity.” Part of what happens at the African Burial Ground, if we think about the context of how some social scientists parse the difference between race and ethnicity… is that the activists were asking the scientists to use their scientific insights about bone density, about how teeth decay over time, about carbon dating, and more germane to our conversation, genetics, to render not just data that would say “This is a Negro or a Mongoloid femur or cranium” but to say “We think, given what the genetic signals are, markers in this sample are… that this person likely came from the Gold Coast,” which was one of the points of disembarkment for the Transatlantic slave trade.
They wanted more specific, contextualized information. So that’s where the tests began. The techniques that are used involve creating a reference database using widely available genetic samples from places like Coriell, samples that scientists use for lots of laboratory research, and comparing them to the few viable samples they were able to obtain to from the burials. So this logic of a contemporary African reference database, and matching samples against it, becomes the logic of the African Ancestry. The company now has a reference database that has, I think, close to 30,000 samples, that it compares the samples of its customers against.
From there the tests appear, just to give you one other example, in the slavery reparations class action suit that begins in the early aughts in the US. One of the early judicial decisions in the case basically tosses it back to the plaintiff class and says “Well you claim that you are the descendants of slaves but you can’t prove it, and so you don’t have legal standing…” The court claimed that they couldn’t prove that they were the people who were injured and that they were the descendants of slaves who had been insured by Lloyd’s of London or transported by CSX.
The plaintiffs go to Kittles, a co-founder of African Ancestry, and he provides them genetic ancestry tests that give them inference matches to African ethnic groups or nation-states. One person is told that they are inferred to be related to someone in what is contemporary Gambia. Someone is inferred to be related to someone in contemporary Niger. They introduce these ancestry tests as evidence of their standing, as evidence of their relatedness to people who reside in places that might have been involved in the slave trade.
These genetic ancestry tests are sometimes called recreational, and in some ways, there’s certainly a faddishness about them. They’re definitely having a hot moment, helped in part by shows like the one that Henry Louis Gates does on PBS. Even a few years before the Gates shows, there was a series of shows on television in the UK actually that highlighted genetic ancestry testing. The show that’s now produced by Lisa Kudrow called “Who Do You Think You Are” started as a British show several years prior. There’s definitely a kind of faddishness to the testing, and attendant to this popularity is a sense that the testing or its consequences are not serious. But part of what I’m tracing in The Social Life of DNA is how these tests that seem to be trivial or even narcissistic are actually being used to address some serious and unresolved issues in US society. A lot of the issues that I’m writing about have to do with unresolved issues around racial slavery, and a lack — an inability, or lack of desire, to have a public conversation about it.
So you touched on this already. Could you say a little bit about the interplay between ideas about race and how genetic analysis is currently being used and interpreted?
Sure. That’s one of the central questions that these tests bring up for us, or that genetic analysis of the last decade brings up for us. It’s a kind of paradox, because so much of our communal discourse about the Human Genome Project, for example, was about how much it showed that we have in common. So in the late 20th century certainly, and early 21st century genetics, the prevailing discourse was that we were, depending on who you ask, 99.8, 99.9 percent alike genetically speaking… But at the same time [the Human Genome Project] opened up super-computing and forms of computer analysis that allowed us to parse in new ways that point-one or point-two percent. For those of us who are social scientists, or who think about the history of race in American society, we in some ways shouldn’t be surprised that the categories that we come up with to think about this difference are racial categories. Those are categories that have been used in the natural sciences for a long time to delineate human groups. The Human Genome Project offered us an opportunity to think about human groups in very different ways — but we ended up, particularly in the early days, with the publication of influential papers using technologies like STRUCTURE that brought us back to the five racial groups. So that’s been happening in the science.
…I think there’s, certainly I won’t say human impulse, but an American impulse in some regard toward a type of racial classification. This is occurring against the backdrop of a rising conversation about health disparities in the United States, and a commitment on the part of the NIH, and scientific researchers backed by federal funds, to figure out why we have different health outcomes, why we have different mortality and morbidity rates, and why these tend to sort themselves out in things that some of us understand as racial groupings. You have a kind of technical algorithm of race that’s being created through things like STRUCTURE, and a social and political conversation about health inequality and about inequitable health outcomes, and the ways in which people quite literally live and die differently. So that’s happening too.
And then you have things like the genetic ancestry tests, which feed into I think a fairly universal desire to know who we are. I think particularly for people who live in a settler colony like the United States, whether or not your family came here voluntarily during a potato famine, or was brought here involuntarily and violently on slave ships, there is this desire when people don’t have deep roots in a place to know more. To know more about old country origins. This moment, and the way this conversation about race and genetics has all of these threads happening at the same time (e.g., genetic science, health disparities, the search for roots, etc.), can be difficult to untangle, but I think it’s necessary to think about the context, and think about a longer race-making conversation in science. As well as a longer conversation about collective memory, and family history, and genealogy practices.
Using the genetic ancestry tests as an example, it’s easy to say “Oh I watched this show” or “My father or someone in my family got a genetic ancestry test, and it told us that we were from this region in Europe, or we were this African ethnic group, and then that must be who we are,” right? But there are all sorts of — and this is the sociology of science/sociology of knowledge piece — there are all sorts of questions that go into the creation of that claim. A company like African Ancestry uses contemporary genetic samples to match my sample, for example. So, what can this tell us about the past?
For part of my ethnography I used the company’s services. I had my mitochondrial DNA analyzed, which traces matrilineage, you know mothers and grandmothers and their children, and you can trace that in both men and women. I was linked to an ethnic group called the Bamileke in contemporary Cameroon. I was inferred to have more than the average person’s number of markers that are similar to someone who’s Bamilekan in contemporary Cameroon. But of course if you’re interested in pre-slave trade, pre-triangle trade identity, before colonialism in Africa, many African nation states didn’t exist in their current form. These categories don’t account for how people traveled over time. It’s not clear even if we want to accept that my genetic markers, the few markers that they analyzed, definitely are a strong connection to Cameroon for me. Does that mean someone who’s living in Cameroon now whose family came in recent years from another part of Africa? Does that mean someone who’s living in Cameroon now who married into a Cameroonian family from another country, village, region? There are all sorts of questions to ask about what that category even means.
Statistical choices are made. Algorithmic choices are made about what markers are said to be Sub-Saharan African or European in a particular sample. I think there can be an impetus to say “Well, this is the scientific information, so this is the ultimate arbiter of my identity. It has the imprimatur of science and so it must be true.” But, in fact, the tools that we use to give us that knowledge are social and cultural through and through… There are scientists who are making decisions about how they’re going to weight genetic markers and about the often proprietary algorithm for the testing companies that they create. You can choose a company that provides a kind of composite of races. You can choose a company that gives you ethnicity. It is a consumer choice that one makes. And there are choices actually, believe it or not, in how people take up the information. All of this makes any straight line “Go to the company and they tell you your race” conversation all but impossible.
How the Black Panthers challenged genetic science
You write about the Black Panthers’ approach to genetic research, their use of Sickledex… how Bobby Seale talked about the importance of not proceeding from a kind of circular logic about race using pre-defined categories: “Seale surmised that such an approach would be not only antiracist but also ‘more scientific.’” This reminds me of the importance of examining what we think of as obvious, of thinking about who is considered an expert, what kinds of voices are heard…
That’s discussed in my book Body and Soul: The Black Panther Party and the Fight against Medical Discrimination which came out a couple of years ago, and which is just out in paperback actually. [Ed. note: It is awesome. Go get it.] I guess one of the things I would want to tell people is, you know, the Black Panther Party thought about genetics! Who knew? And I can only write about this in a bigger chapter on sickle cell anemia, which in the medical pathology literature is the first genetic disease. It’s the first one we understood as being a result of genetic factors. It’s a Mendelian genetic disease.
What’s so fascinating to me about genetics, for so many reasons that my former teacher Dot Nelkin and her collaborator Susan Lindee wrote about in their book The DNA Mystique, is how we understand it… DNA has been called things like the Holy Grail, the Book of Life. Part of what that kind of mystical, almost cosmological language about genetics does, is suggest that it is beyond the reach of people who aren’t experts, that lay people can’t have anything to say about it, right? That it’s so complicated, that you have to know so much about it, that there’s nothing you could possibly say if you don’t have a PhD in Molecular Biology.
What’s so interesting about the Black Panther case is that in the early 1970s, on the occasion of an international meeting of genetic scientists at UC Berkeley, the Black Panther party held a press conference, because they’re upset about racist claims that are being made by some geneticists in the 1970s. One of the things that they say that’s so radical is “We want better science.” If you want to think about what might be a Left way of thinking about genetic science, either in that moment, or in our moment almost 50 years later, I don’t think our first impulse is to say, “We want better science.” I think a Left response is too often misunderstood as being like “Shut it down. Science is bad.” A kind of anti-science perspective. And surely there’s some of that, but what the Black Panther Party brought to the conversation, using their coverage of their own press conference, was an understanding about the categories that scientists use to make claims about genetic difference.
One of the things that Bobby Seale and Elaine Brown say in the press conference is that they don’t have a problem with genetics necessarily. They don’t have a problem with genetics even making comparisons between types of human groups, or different human populations or communities. But they pose the question, why do we always choose Black and White? Why are we, in a society that’s founded on settler colonialism and racial slavery, using categories that in some instances justify these kinds of politics of oppression, expropriation of resources and slavery? Is it just a coincidence that we use these categories of analysis?
Seale says instead of just comparing Blacks and Whites, why don’t we compare people who live in the South and people who live in the North, people who live in rural settings and people who live in urban settings? And they go on to create these other ways that we might think about dividing up the world that are also meaningful categories, in order to expose the deeply social and political impetus behind the choices of categorization that we make in science. Moreover, pushing a little farther they were saying, “Why even use categories at all?” In today’s context I think a researcher might reply, “The genome is huge. There are three billion base pairs. It’s so much data, even with computers that can handle big data, you’ve got to make some choices. Otherwise it’s just too much going on.”
But if we want to extrapolate from what the Panthers were saying in the 1970s, they were getting a little bit closer to an idea of each of us having our own genetic attributes, and not using social categories and political and racial hierarchies, and mapping these onto genetic science. So “more scientific” for them was the use of categories in the human sciences that were not overloaded or overdetermined by the use of categories that were already deeply implicated in hierarchical and political structures in the US.
Hope, fear and hyperbole
I was wondering if you could say a little bit about what some of your fears might be about genetic testing as it’s currently practiced, and what some of your hopes might be. Or what you think we should be guarding against versus embracing, if you had thoughts about that.
Sure. I don’t think that genetics analysis, for example the use of technologies like STRUCTURE, are necessarily neutral things. They come to us with a lot of cultural and social priorities about what we want to do about health care, about what we think natural or expected human groups look like. With that said, I don’t think that things like genetic ancestry testing are necessarily a scourge on society. I just think that we need more genetic literacy. People just need to know a lot more about what they’re consuming, and they need to know a lot more about the limitations. The companies that will give you what I call in my writing racial composite testing… 23andMe calls it “ancestry painting,” and other companies call them different things. Ancestry by DNA used to do a version of it where you’re basically getting percentages of your racial makeup, you know, European, Sub-Saharan African, Asian and the like. Those calculations or their inferences can have sometimes large margins of error or small margins of error, so I think that information needs to be placed where consumers can readily find it, and I think we also need to have literacy around statistics in our society more generally.
So it’s a double-edged thing. With the people I’ve spoken to, the interest in family history makes people who weren’t interested in science much more interested in it, or people who weren’t interested in genetics much more interested in it. It causes them to pick up the Journal of the American Medical Association, or go online and look at different scientific papers; to read the newspaper more closely as these articles on science come out week after week, as these new papers come out in the scientific journals. Whether it’s going to shake out to be a net good or a net bad remains to be seen, but I do think we just need a lot more transparency from genetic ancestry companies with regards to their data. Because the companies are proprietary, they don’t have to share data… so thinking about what Bobby Seale was saying about better science, one thing that we might think about as a form of better science is other companies or other scientists being able to use the same markers and see if they come to the same conclusions, right? But because the companies are private companies, and because part of their market edge is also the robustness and uniqueness of the database that they’re able to create, these are trade secrets that they don’t want to share…
There’s still not as much information as there should be available to the public about what goes into the claims and the categories that are made around genetic ancestry testing. And I think that there is still a lot of modesty for many bench scientists about what genetics and genomics can accomplish for us with regards to health care. After the ten-year anniversary of the initial decoding of the human genome, there were some interesting articles. In the New York Times, science journalist Nicholas Wade wrote, I think somewhat begrudgingly, that the medical advances promised by the human genome project remain, and he used the phrase, “largely elusive.” He’s usually, week to week in the New York Times, a pretty strong booster of genetic science, but this was a moment of him being modest about what we had accomplished thus far. This was a few years ago, which is light years in genetic science research, but worth noting.
On the occasion of the same anniversary, Craig Venter, who was the founder of Celera Genomics, which helped to accelerate the decoding of the human genome, did an interview with Der Spiegel, and he said that we hadn’t learned anything from the genome at all. So that’s partly just Venter being his provocative self, and someone who is always trying to drive scientific agendas, and he’s fascinating for exactly that reason. But I think that even people who know the most about genetic science at this moment have a sense of humility about what it can accomplish. If we could convey to lay people, to people who aren’t bench scientists or who aren’t working on the cutting edge of health genetics or consumer genetics, that there should be a bit of caution and a bit of modesty about the claims, then we will be less likely to get people who say “Oh now I know that this is what my ancestry is,” or “This is what my race is,” or “This for sure is what my health profile is.” Or even frankly “This is the suspect who committed this crime.”
It’s not so much about whether genetics is good or bad per se, but I think there is a lack of understanding about just how limited the gains are, even though the claims come with a lot of hyperbole, just how modest the claims actually are in practice, and even in epistemology.
Do you have a sense of where the hyperbole is coming from, kind of what’s missing in the chain of communication that is maybe helping or not helping people to understand the complexities?
I think contemporary science is an ecosystem that all of us participate in, whether or not we’re scientists. The discursive ecosystem includes things like press offices at universities that write press releases about papers for members of research faculty. These press releases, or articles in university news that then might go to circulate in other venues – it’s a hard goal, translation. So they’re trying to simplify what might be a paper that’s trying to synthesize decades if not years of scientific research, research that might be more complicated than a non-specialist can understand, that’s likely published in a journal that’s for specialists. So nuance gets lost in that claim. You’re not going to report the plus or minus 20 points as a margin of error on a paper. You’re more likely going to say, in a press release or in something that’s trying to simply the claim, “In most cases, the gene for this means this,” right? So that’s part of the issue. And that happens as well in some science writing, so you see it in our local papers, the ways that scientific papers and press releases about science get reported in the press.
But it also happens in the way we as taxpayers and the people who represent us participate. Funding entities like the NIH — grants increasingly have a communication component, so to get funded you have to be able to communicate in a certain way, and say that you’re going to communicate your results to a wide variety of audiences, not just to people in your small scientific field… If you’re in a job in a public health school or medical school that is constantly on this grant cycle, part of what helps to get you funded is if people know about the last big splash that you’ve made, right? So if you can say in your grant app that our last article in this proximate area received press attention all over the world, then that helps too.
So there’s this discursive ecology and these feedback loops that we as consumers, and we as scholars, participate in, that scientists participate in, that the media participates in, and all of that can go to oversimplify or to flatten the nuance about the science – and to also create hyperbole. Also in journalistic practice, the retractions are never as big as the story. There will be a story about, you know, ‘the gay gene’ or the gene for X or Y, and someone, maybe even one of the scientists who wrote the paper… You know, it’s like the game of Telephone when we were kids: two or three iterations later you say “Well that’s not exactly what we mean.” Even if the scientist who did the science writes back and says “Well we meant something softer than that” or “The heading that this editor at the newspaper gave to a science writer’s story should be softened a little bit,” that’s not going to get the biggest splash. It’s going to be a small paragraph or a line.
Genetic science promises to be the Book of Life or the Holy Grail, or the research that’s finally going to give us longevity and give us the end to cancer and these sorts of things. I think all of us want to live longer. Nobody wants to die. No one wants their family, someone that they love and care about, to die of cancer or any other disease any sooner than they have to. And so I think that part of all of our investment in the hyperbole is truly a hope that there might be something that could be magical, that could be a silver bullet for so many of the things that ail us, including the kinds of social and political problems that I’m looking at…
When you mentioned crime and the use of DNA to identify criminals, I wondered if there were examples of that not being effective that came to mind.
In September of this year Carl Zimmer wrote a really interesting piece about how our understandings of genetics are getting more complicated. It was a fascinating review essay, and he summarized some recent scientific papers that were examples of this. One of the examples that came up in a couple of the papers was the chimera, this idea that people could have more than one genome in their body. Some of the examples from the papers that he was citing were regarding women who had given birth and who carried the genomes of their children in addition to their own… And, different genomes can reside in different parts of the body, and depending on where a sample comes from, whether you take it from the blood or a cheek cell, there actually might be more than one genome inhabiting that tissue. So, alongside the conversation about racial identity and the history and sociality of thinking about identity, and how that should throw into tension scientific claims about identity, it’s also the case that even the science is not as definitive as we might expect. If there can be more than one genome, there can be more than one, you might say, genetic identity. This could be true for ancestry testing. This could be true for genetic testing used in a criminal justice setting as well…
Scientific music, metaphysical music
So I guess my last weird question was about if any songs come to mind for you when you kind of think about this topic…
Probably the whole oeuvre of both Sun Ra and Alice Coltrane, who are making what you might call scientific music, but it’s also metaphysical music. Part of what’s so interesting to me as a researcher about contemporary genetics and what we think it means in society, is that it’s making claims about science or the scientific, but we’re also asking it to do some pretty significant metaphysical work. The work of Sun Ra and Alice Coltrane resonate with me in that regard. And Sun Ra also of course because there’s a lot of discord and cacophony in the work. Coltrane is a bit more melodic. Sun Ra, you have crashing, booming — depending on what your taste is, even difficult to hear — combinations and recombinations of sound. So I think that the Sun Ra pieces are also a manifestation of the discord in how we think about ourselves and our communities after the genome. But also discord with the hyperbole that does not render the full complexity of human experience and human societies.