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Noon Edition

Sociologist Jenny Reardon

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(SOUNDBITE OF BELA FLECK AND THE FLECKSTONES' "BLU-BOP")

CARL PEARSON: I'm Carl Pearson and welcome to Profiles on WFIU. On Profiles, we talk to notable artists, scholars and public figures to get to know the stories behind their work. Our guest today is Jenny Reardon.

(SOUNDBITE OF THE BEST PESSIMIST’S “MAKE A WISH”)

She is a professor of sociology and the founding director of the Science and Justice Research Center at the University of California Santa Cruz. Her research draws into focus questions about identity, justice, and democracy that are often silently embedded in scientific ideas and practices. Jenny's training spans molecular biology, the history of biology, science studies, feminist and critical race theory, and the sociology of science, technology and medicine. She is the author of Race to the Finish: - Identity and Governance in an Age of Genomics, and The Post-Genomic Condition - Ethics, Justice, and Knowledge After the Genome. Jenny Reardon has been the recipient of numerous fellowships and awards for her keen and clear-headed insights into the myriad ways that genetics and genomics shape, and in turn are shaped by, ideas of race and justice. Jenny Reardon, welcome to Profiles.

JENNY REARDON: Thank you.

CARL PEARSON: Your work focuses on genetics and genomics. I was wondering if we could start simply by distinguishing what we mean when we say genetics versus what we mean when we say genomics?

JENNY REARDON: Well genomics is really just - one way of thinking about it is as an industrialization of genetics. I once saw a cartoon in - I think it was science magazine - where there was a person with a fishing pole on one side fishing for a fish - one fish at a time - and the other side was someone who had a big net who was down picking up a whole bunch of fish at once. And that was their way of representing the difference between genetics and genomics. We used to study this area of biology one gene at a time and now we can look at all of the genetic - all the DNA in a human being all, at once - in what we called the genome. The genome is the sum total of all the DNA, the 3 billion nucleotides, that make up a human genome. And it's the human genome project that gave us the technical capacities to look at all of that DNA rather than searching for genetic variants one gene at a time. So, that's really one way of understanding what the difference is. But it moved biology into what people referred to as a big science. So, no longer just cottage industry, one lab at a time, one principal investigator, but big, large operations - and the listeners might be aware of a lot of the big companies that have come up as a result of this, too. It also has become business in a way that it hadn't before. Probably the most likely one that people will have heard of is 23 and Me, which will scan your genome and tell you about your genetic variation.

CARL PEARSON: Let's back up to the 1990s. Over the course of the 1990s, the Human Genome Project decoded the human genome and it gave us a list or a code of every letter in the human genome, the 9 million…

JENNY REARDON: ..3 billion...

CARL PEARSON: …3 billion nucleotides in the human genome. And that project ended successfully in year 2000. At the same time in the 1990s, there was another allied project, the Human Genome Diversity Project. However, the Human Genome Diversity Project did not fare as well as the Human Genome Project. It's probably less familiar to most people. Could you tell us a little bit about what the Human Genome Diversity Project was and why it did not succeed in its goals?

JENNY REARDON: A little bit related to what I was saying about what genomics is - the Human Genome Project came into being. There were a lot of life scientists who worried that it might destroy what they liked about biology, making it into a big science, and also that it would ignore some of the questions that were quite central to biology, namely where does the diversity of life come from? The Human Genome Project was only going to sequence one human being and a lot of folks were saying, “well, first of all, why do we just want to sequence a human? What about the mouse? What about the plants? Why are we making humans special? And, second of all, if we have just one human genome, we can't ask questions that we want to ask about diversity.” And so a group of population geneticists proposed the Human Genome Diversity Project, which, actually, in its goals went back to an idea that was very old - well, at least a half a century old - going back to 1950, first proposed at the Cold Spring Harbor Symposium by the Theodosius Dobzhansky, who was a population geneticist who proposed going around the world and collecting blood from indigenous populations before these indigenous populations, as they put it, became mixed up with the rest of the populations. And the reason why they wanted to do that is because they were interested in basic questions about human evolution. So, they wanted to look at the organizational structure of the human genome at the time that the human species came into being. And their argument was that, of all the people living on Earth, those that are most likely to have that original structure are indigenous populations. It became very controversial for a variety of reasons, one of which - if you just think about the history of the human species - people contested the idea that indigenous populations were somehow unmixed; that somehow there's this time - that there's anybody, any humans on the planet who haven't mixed around with other folks, that there's any kind of pure, quote unquote, groups. Isolated was the language they were using. In fact, they use the language of isolates of historical interest. I remember, I still have the document where they met at Penn State in 1992 and they created a list of seven hundred and twenty two isolates of historical interest. And that list got leaked to an indigenous rights organization through RAFI, which at the time was called RAFI, the Rural Advancement Foundation International, an NGO up in Canada, and you have to remember that this is a time when the Internet was first coming into being. And also, it was the five hundredth anniversary of the, quote unquote, discovery of the New World. And indigenous rights groups were organizing basically against the celebration. So those two things came together to make the diversity project a kind of lightning rod for a broader concern about indigenous rights. So, RAFI leaked the document to indigenous rights organizations, who then accused the project the Human Genome Diversity Project of being the vampire project - more interested in sucking the blood of indigenous peoples than in their continued survival. It was going to start a new form of bio colonialism, a new form of scientific racism. Scientists had to have bodyguards. I mean, there was a meeting in 1996 in Montreal where Luca Cavalli-Sforza, the father of human population genetics who proposed the project, had a bodyguard to go to this meeting. There were Canadian Mounted Police out in front of the first international human DNA sampling meeting, or something like that. So, it remained a moment in the history of this field that scarred many people. I like to say that it's not very many biologists who go into biology to start the next wave of scientific racism. Biologists, like many of us who are in the economy or in science or in research somehow, hope that they're making the world a better place. That's part of what made this project of interest to me.

CARL PEARSON: And so, ultimately, because of the controversy surrounding these questions, the Human Genome Diversity Project - what happened to it?

JENNY REARDON: There are those like Luca Cavalli-Sforza who will say that it did continue on, but only in different form. It did stop receiving federal support. It had received money from the National Science Foundation to organize three planning meetings, but it then became project non-grata at the federal level. No one wanted to come close to it. Everybody attempted to distinguish themselves for it. However, the problem was that everyone knew. I mean, everyone in this community - in the genomics community - knew that once the human genome project was done, the next thing people would want to do is to look at not just one human genome, but many human genomes and how they differ. And so. how are you going to do that? And so, eventually the federal government comes up with its own effort to look at differences between human beings at the genomic level. And they end up, interestingly enough, calling their project to the International Haplotype Map Project. And you might ask yourself, “well, what is a haplotype?” And that's I think exactly was part of the point. They didn't want a name that could be a lightning rod like the Human Genome Diversity Project, which was too easily recognizable as a project that was about studying human beings at the genetic level and the differences between them.

CARL PEARSON: And so, the Hap Map Project was the shorthand for it. That eventually was funded by the federal government and produced results.

JENNY REARDON: Yeah. So, the Hap Map Project also faced all kinds of questions about how they were going to go collect DNA from human groups and how to do it ethically. They spent millions of dollars on trying to figure that out. And they put a lot of funding into what they called community engagements with those they were going to collect DNA from. They were very much trying to do it exactly the way the diversity project did not. So, one of the problems with the diversity project is that you had scientists who sat in their rooms on a college campus, coming up with their lists of who they wanted to go out and sample without ever bothering to let those folks know that they had any interest in sampling them, and make decisions without talking to the people. So, they were going to put a lot of money into we're definitely gonna ask people. We're going to let them know. But they still faced a lot of the same trouble. They were accused early on of making a race map because they decided what they were gonna do is collect a sample - there was going to be one set of samples from Europe, one from Asia and one from Africa. And people saw that as racial division. And it was interesting, too, the sample in Asia - they were going to go to Japan and sample there. And Japan had been involved in the Human Genome Project. It was actually partly because Japan was leading in biotech and in developing genome sequencing that people in the United States - and these people were not just scientists, they were entrepreneurs – got very interested in funding human genomics because they were afraid Japan would win the race to be the leaders in biotech. And some listeners may recall that at that point in history folks were worried about Japan taking over the electronic sector. So, we had worked with Japan on the Human Genome Project. The idea was we go to Japan and we'll collect samples. But at that time, China was rising up as a world power. And while in 1996 or 95 or so, the Human Genome Diversity Project made a decision that despite the fact that there were 2 billion people in China, a study of human genetic diversity would not involve any human beings from China because of the human rights abuses, in 2002 the NIH made a different decision. And I remember talking to them about this, and they said, “we wanted to give China a chance and we wanted to help them do this work in an ethical manner. We thought being involved in a project that was concerned so much about ethics would be a good way.” And China said, “there's no way that you're going to make the next generation of human genome maps and Japan's going to get to represent Asia.” So, China and Japan agreed to share representation of Asia. And, actually, at a technical level, the chips that they used to put the DNA samples on to sequence at that time had 90 wells. And what was agreed is that China and Japan would divide up these 90 wells so they each got 45. The geopolitical politics of how we represent the human genome is a fascinating story. But then how do you do this ethically? How do you go to Japan? How do you go to China, none of which have traditions of informed consent, going out and getting consent for people to do things? So, are you imposing Western bioethical norms onto places like China and Japan? That question was raised. And in practice there was just a problem of how do we practically do it. No one's used to us coming out and saying, “how should we do this scientific research?” So, in Japan they plastered the subways in Tokyo with, like, “come to our meeting to discuss this.” And, apparently, like, I think no one showed up. So, they ended up just sampling people from the lab of the guy who was the researcher there. And in Beijing, they ended up sampling on the university campus where the researchers were. That was one ethical issue that came up in that case. And also, they did promise the people who they were going to sample DNA from, “look, you get to name these samples. We're not going to say who you are. We're not gonna collect your DNA and then put it on there, ‘African’. We're gonna collect your DNA and then you tell us what you're gonna put on that label, how we're gonna put in our freezers, how we're gonna organize it.” So, that was supposed to be part of the community engagement. The community gets together, quote unquote, the community. Part of the problem was, “well, who are these communities?” Like, “okay, you're gonna go to Nigeria and you want to sample the Yoruba” - well, they don't exactly constitute a community. There's millions of people who are Yoruba, so how do you decide who you're going to sample? But they did. They did practically find ways, like connections they had on university campuses or whoever they knew. They got people together and they did have these discussions about, “well, how do you wanna be named?” They came up with lots of names. Then the reality hit that when the communities came up with these names - say, for example, when they did the sampling, they eventually expanded beyond China and Japan and Ibadan, Nigeria. So, beyond Tokyo, Beijing and Ibadan where they originally did the sampling, they expanded to include some more groups, and they included a group in southern Europe. When they went to Southern Europe the community said, “we want to be called traditionally red - red for blood, red for communist, and red for wine.” And so, they sent that back to NIH. And NIH said, “that's not gonna work. We want something that has some geographic reference.” So, then they came up with something else like, “Europeans in Southern”…I don't know, something. They came up with a name that also didn't work. And at the end of the day, the only thing that they were allowed to do was to take the name that was ultimately decided by the scientists and to have it in their own language. It was an interesting example of where we say, “okay we're gonna give the power to people to represent themselves, but only if it stays within the realm of what is scientifically legible.” That was an interesting example of the effort to deal with these problems, and how they're actually quite complicated in practice. You don't just correct your ways and say, “okay, we did it the wrong way.” The difference in the project that did it the wrong way - they completely ignored the people, they gave them no rights. Now we're giving all the rights to the people. Neither of those things worked, and one of the arguments I make in the book I wrote about the human genome diversity project is that there is a process of co-production that happens. For science to come into being, you can't just say, “oh, it's just all up to science,” or say, “politically determined.” Actually, the political order and the scientific order have to be constructed together.

(SOUNDBITE OF THE BEST PESSIMIST’S “MY LONG GOODBYE”)

 

CARL PEARSON: You're listening to Profiles on WFIU. I'm Carl Pearson. Our guest today is Professor Jenny Reardon, a sociologist at the University of California Santa Cruz and author of The Post-Genomic Condition.

Your first inclination to study molecular biology…but, in fact, you considered fairly seriously going to Indiana University. In the end, however, you decided to study genetics and genomics, not as a scientist, but as a sociologist and historian. What made you follow the sociologist-historian's path rather than the scientist path in the study of biology?

JENNY REARDON: I was actually very close to being a graduate student working on the Human Genome Diversity Project. As an undergraduate at the University of Kansas, I was a biology major and I had from a very young age been involved in scientific research. At the age of 13, with the help of my father, I constructed a lab in my basement. This is right when the ozone hole was just being talked about and I had read some Newsweek article about how the ozone hole was going to impact the primary productivity of the world's oceans. And so, I wrote to the scientists in the Newsweek magazine with my little hypothesis - the null hypothesis - my hypothesis and my research methods on a yellow legal pad. Bless these scientists, they wrote me back with little notes in the margins, giving me suggestions. A researcher who went on to be a big climate science researcher - he was then at the University of Oregon - did that, Robert Morris. And then another scientist from Hawaii sent me a phytoplankton settling tank. At the age of 14, I won the Grand Award at the International Science and Engineering Fair in Puerto Rico in the area of environmental sciences on a project that looked at the effects of enhanced levels of UVB radiation on the primary productivity of the marine diatom thalassiosira pseudonana. And if you win an award like that at 14, it turns out that people think you ought to be a scientist. And I continued to do the phytoplankton research. I took my little marine diatoms from the Atlantic Ocean and took them to Hawaii with me to expose them to natural levels of enhanced level of UVB radiation, and spent three months on the island. If any of our listeners will have heard of Coconut Island, it's the island they show at the beginning of Gilligan's Island that I used to watch as a kid. So, I spent three months on Gilligan's Island with about 13 people, and we would joke about who was Mary Anne and who was Gilligan, et cetera. It was right at the time of the Gulf War, and I was a very young person in science at the time. I was 19, pretty young to be doing your own independent research with all of these other researchers who were from Israel, who were there to study coral reefs, to do a comparative study between the coral reef in the Red Sea and those around Hawaii. It'd be late at night, going out to my diatom settling tanks, putting radioactivity in them and listening to people's war stories and thinking, “wow, they don't tell you about this in the lab manual about how you do science,” like, how you are gonna be thrown together on an island with people from very different parts of the world and figure out how you're gonna navigate across these differences? And I got myself into a position where I was a little bit in over my head for being 19, trying to figure out how to navigate some of those social dynamics and lab life, as it were. And that is also not in the manual. I also had a father who was a Jesuit priest and who instilled in me early on an interest in asking big questions about theology. So, I was always the person who was asking the big question. If you were good at science at that time period, you were encouraged to go into molecular biology. So, I eventually moved from the phytoplankton research into doing development on molecular biology. And I applied to go to grad school, as you mentioned, here at IU in biology, a PHD in molecular cellular biology at UC Berkeley, where I was going to work with Mary Claire King who was one of the proposers of the Human Genome Diversity Project, but I had all these other interests. I was interested in asking big questions like, “what is the gene?” And whenever I would ask that question, my lab mates would just laugh and say, “yeah, that's Jenny. She asks those questions.” And at a certain point I just decided I didn't want to be the lab clown for the rest of my life. And I did try to figure out a way to do both molecular biology and history and sociology of science. So, I, in fact, asked at Berkeley, “would it be possible to do a PhD in molecular and cellular biology and a master's degree in history of science?” And I was told that those groups didn't like each other and it wasn't going to work. So, I had to make a very difficult decision. I basically had to make a choice, and it was one of the most wrenching decisions I've ever made in my life, because everyone thought I was going to become a scientist. I thought I was going to become a scientist. I'd spent, at that point, nearly a decade training myself to be a lab scientist, and I ultimately decided that I did not want to be contained in my thinking. So, I made this big leap and decided to move into history, sociology and cultural studies of science and technology. So - best decision I ever made. I still get to learn about what's happening in genomics, but I can ask, “what is the gene?” And I can ask the larger question.

CARL PEARSON: In your most recent book, The Post-Genomic Condition, you returned to the question of, “how do we sample human beings for genetic material?” It turned out to be deeply problematic for the Human Genome Diversity Project and continued in the 21st century to be difficult to figure out who it was that should be sampled in order to get a diverse picture. We talked earlier about genetically isolated groups of people and the importance of that. One genetically isolated group of people that scientists turned to were African-Americans in the Black Belt of Alabama. Could you tell us a little bit about what happened in Tuskegee and why that was considered to be a good place to look for genetic material, and how that sampling ended up turning out?

JENNY REARDON: As I mentioned with the Human Genome Diversity Project, the project got critiqued for two things - using this language of isolates of historical interest, arguing there were no isolates, and also something I didn't mention before of going around the world and plundering the DNA of other nations. So, it was considered a kind of exploitative colonialist project. And so, there was very little willingness on the part of the NIH to go outside the United States once they got to the point where they wanted to study human genetic variation research. They did not want to be critiqued the way the Human Genome Diversity Project was critiqued. So, they said, “look, the United States has all the diversity of the world. We're the melting pot. Everyone's here. We'll just go out into our backyard and sample who we have here. But still we don't want really mixed up people. We'd like to have people who represent as nearly as possible what we used to describe as isolates of historical interest. So, we're gonna go to this part of the U.S. where there are people of African descent who have not moved around very much, who were brought here during the slave trade and did not move.” This area was dubbed the Black Belt by W.E.B. Dubois - and it referred to the quality of the soil - and then became this name for this region where a lot of enslaved people were made to work because of the quality of the soil. That's the Black Belt. Tuskegee, Alabama, is in the so-called Black Belt. At that time, the reason why they were going to go to Tuskegee is because they were just forming a Bioethics Institute at Tuskegee University, what used to be called the Tuskegee Institute - a historically black college – where, in the late 1920s, the idea to collect blood from African-American men to study syphilis emerged. That became the infamous Tuskegee syphilis study. And as some may know, this project which took blood from, I believe ,three hundred ninety-nine adult African-American men to study the natural course of how syphilis progresses without giving them treatment, became symbol of the abuse of human subjects by biomedical researchers. And we then had a presidential bioethics commission that formed that produced something called the Belmont Report, and this is where the principle of informed consent came from that we now use; became enshrined in federal law. In 1998, then-President Bill Clinton issues an apology for the Tuskegee syphilis experiment, and, as part of the reparations, provided money for a national bioethics center to be sited at the Tuskegee University in Tuskegee, Alabama. And at the same time, there was a geneticist there who was from Africa who made the argument that the human genome project needed to diversify, and we couldn't let it just wait to trickle down to African-American communities. There ought to be African-Americans involved in the human genome project. And they organized a meeting at Tuskegee - the first meeting, I think - on human genomics at a historically-black college. And - I believe in 1996, I think - and brought all the big leaders to Tuskegee, Alabama, including Luca Cavalli-Sforza who at that time was in the middle of the Diversity Project debates, but also Maynard Olson, a big leader in human genomics, known as the technical guru of the Human Genome Project. Lots of the biggest figures in genomics came to Tuskegee, Alabama, to have a meeting that was called Plain Talk about Human Genomics and Race. So, they engaged in the debates there in Tuskegee, Alabama. And one of the outcomes was to say that we need to diversify the human genomics workforce, which I knew from my own experience was very white and male. As a result of that, the organizer of the meeting ended up in a research partner with Maynard Olson at the University of Washington, and they came up with this idea that they would retrain this geneticist - who was a turkey geneticist before - to become a human genome researcher and to create a sequencing center in Tuskegee, Alabama. So again, this is all about trying to create an ethical genomics. We're not going to do what we did in the past. We're not going to be another Tuskegee syphilis experiment. And this is around the turn of the millennium that this is happening. So as part of the project, they ultimately get to a point where they need to sample people. In order to do their sequencing project, they wanted to sample people in the region. And they come up with a project that they think will be of interest to the local people about nutrition, so basically a gene environment study looking at the link between what you eat and heart disease and also your genetics. So, they were trying to tease out what was important, and was environment important? Were genetics important? They went through the IRB, institutional review board, which, after Belmont, all universities have one of these things and they are to review research that involves human subjects to make sure it's being done in an ethical manner. When I went there, I had no idea that this genome sequencing thing was happening. I went there because, in the wake of the diversity project, I was interested in seeking out projects that were more hopeful, that were examples of how we really could democratize science. And with the opening of the Bioethics Center down in Tuskegee, one of their projects was trying to get the voices of African-American people involved in the policy debates about genomics. And so, I had gone down just to talk about that project. I had no idea about this other project. But then, I was being taken aside by people saying, you know, “look, there's this other thing happening. What do you think of this, etc. etc.” I was being pulled into side conversations about it, and pretty soon I understood that there was something else going on and that people had questions about it. They weren't quite sure that even though it had passed IRB review board muster, they still weren't sure that this was OK to be doing it for a couple of reasons. One was it wasn't clear that they weren't actually coercing people into taking part. This is a very, very poor part of Alabama. Offering people twenty-five dollars is a sufficient incentive to get people to take part, maybe without them really thinking about the other potential implications of this. So, the argument was do they really have a choice if you're offering twenty-five dollars in the context of extreme poverty. The second problem that I got specifically involved in was the question of whether or not - although we were collecting this DNA for one use- could it be used for other uses? At the time, the hope had been that it would be possible to get blanket consent. In an era of genomics, you collect a DNA sample, you don't just want to ask one question about a person's DNA. You could ask many, many, many questions about their DNA. And sometimes you don't even know what questions you might want to ask. You'll figure it out in the future. And the way genomics works, as I explained earlier, is: it's not one gene that we're studying. It's multiple possible genes, but we don't potentially know which ones. The idea was, in the era of genomics, it doesn't make sense to just say, “OK, here is the hypothesis we have and here's what you're consenting to.” We're doing what we call hypothesis-free research. We don't know what questions we might ask. So, we need you to give consent for all possible uses of this DNA. But for the people of Tuskegee, Alabama, who had been through the syphilis study, this was not OK because it was precisely the need to know what research you're doing that was the problem; the fact that they weren't told. And so now they're being told that the very structure of the research itself makes it impossible for us to address your ethical concerns. So, I ended up having some very interesting conversations with people on the ground about this. And it was clear that not everyone agreed about what should happen. The third concern was the concern that in a community where there was no basic health care, where there was no hospital - in fact, I heard many times upon arrival: a few months ago, the Episcopal Church fell down on a Saturday. What if it had been a Sunday? It's a long drive to the nearest hospital. People would have been well dead by the time they got there. So, in a community where there's no basic health care, what sense does it make to be doing genomic research? And this was coming from people who had been spending a lot of time trying to go out into the community to do this democratic project of engaging the African-American people in a discussion about genomics. And no one was showing up. And people were basically saying, “look, this is not our highest priority. Why do we want to give our time and energy?” And time and again this has been one of the constant refrains and problems of genomics is for many people the issue is, “look, this is not my top priority. Housing is, access to good food and health care - basic health care is. If I come and talk to you, I'm essentially legitimating your line of inquiry, which is in competition for research dollars with the kind of research that might actually help us.” Now of course, if you talk to people at the NIH, they'll say, “well, actually we can't divert the money from genomics into other things.” And they're right. And in some ways if people across the board refused to take part in genomics, they would influence the future of this and they could potentially block the development of this. But, of course, now in a global age of research in 2002 NIH said, “look, we're not going outside of the U.S.,” but then quickly changed its mind as China said, “no way are you going to make the next generation of human genome maps and only do it in the U.S. That's unethical.” And now this research is very global. So, if people in Tuskegee, Alabama, said no, you just go to some place in Africa and collect samples now. So, the point being that these were the three reasons why this became much more difficult than anyone had imagined to do this work, and in some ways raised the old issues that the syphilis experiment had raised. But one of the arguments I make in the book is that the problem that the organizers faced is they attempted to use a Western biomedical ethical framework to address the problems - okay, well, let's get informed consent and that will solve the problem - when there were deeper problems of justice at stake that the ethical framework doesn't address. It's for those reasons that that project I think never was able to move forward either. Eventually it also shut down.

(SOUNDBITE OF THE BEST PESSIMIST’S “HEARTS”)

CARL PEARSON: You're listening to Profiles on WFIU. I'm Carl Pearson, speaking with Jenny Reardon, professor of sociology at UC Santa Cruz and author of The Post-Genomic Condition.

An important reason generally, I suppose, why it's difficult to find people to sample for Genomic Research is the history of eugenics. So maybe you could say a little bit about that and attempts to overcome the problem of sampling as done by personal genomics companies such as 23 and Me.

JENNY REARDON: Yeah, exactly right. One of the big problems genomics had early on was its links to human genetics, which was strongly linked to eugenics. I don't know how many people will know this history, but eugenics had a very strong presence in the United States. We think of Germany as being the place where race science took off,, and eugenics took off and people were sterilized and put to death. But a lot of the ideas that Germany implemented came from the United States. There were American researchers and German researchers that were collaborating with one another. In any case, the most notorious example of this that most people ended up knowing about was Nazi science. And in Nazi Germany, there were things called genetic courts. And they would make decisions about who should be sterilized based on pedigrees and genetics, according to their understanding of genetics. And so, millions of people lost their lives, and this was not quickly forgotten. A lot of work was done in the human genetics community to try to distance itself from this history. But, again, it's not easily distanced from sterilizations in the United States continued and were on the books - sterilization laws - well into the 1970s. They still take part in prisons today. You can be deemed unfit for reproduction if you end up in a prison these days. And your rights to reproduce will be forever revoked. It used to be that we also base this on genetics. A famous legal case, Buck vs. Bell, in which the Supreme Court ruled that seven generations, quote unquote, of imbeciles was enough and that it was not the responsibility of the state to take care of these people, that instead the state had the power to make sure those types of people didn't come into being. This was the argument. This is when we thought genetics was linked to things like the inability to have an intelligence; enough of an intelligence to operate in society. There are lots of concerns that your genetic information can be used to do all kinds of things to you, everything from deny you health care to sterilizing you, to - if we're thinking of Nazi Germany - put you to death. I've talked to many scientists today who would say that's an irrational fear that we have about our genetics and our DNA. I'd be much more concerned about my credit card information being stolen, but no one's been put to death because of their credit card information, as far as I know. But people have been put to death because of their genetic information in the not-too-distant past. If you're gonna believe that it's irrational to not worry about your DNA, you have to believe that human beings don't repeat the past. And I think we have lots of evidence that history does repeat, and things that we thought were way behind us somehow now are contemporary again. And when it's your own life that's at stake, people tend to spend a little bit of time thinking about whether or not they're going to provide that information or not. When the human genome project finished, again, everyone understood that having one human genome sequence wasn't going to produce anything of much good. You needed to look at variation and you needed to then make sense of it. And people wanted to do things like link genetic variance with like what drug you should take. This is the early idea of pharmacogenomics. Like, they'll be the green people in the red people. And the green people if they have genetic variant a and they should get the drug. And the red people have genetic variant B, and they shouldn't get the drug because they don't have the biomolecular mechanism needed to process the drug. And that's how they thought it would be. But turns out biology is much more complicated than this. And it didn't work out that way. But, in any case, there was a lot of hype around the completion of the human genome project. People thought all these new drugs are just around the corne,r and it's going to be terribly important for people to know their human genetic variation data, and people should have access to it. They should have the right to have access to it. It should not be kept from them by a paternalistic government, by a paternalistic National Institutes of Health that says that their genetic privacy concerns and people's DNA data should be protected. There was a whole movement by entrepreneurs in Silicon Valley who said, “no people should have the right to their genetic data, and we're going to create companies that give the sequence directly to them.” And the first company to do this was DNA Direct, which was started by Ryan Phelan, who actually started the first brick and mortar Patient Information Library, which then ended up becoming Web M.D. So, she sold off her brick and mortar library to the people who became Web M.D., and all the data that went along with it. But she remained in this space and started the first direct-to-consumer genetic testing service in 2005 or 6. This is before 23 and Me. About that same time, we see 23 and Me form, which was formed by Anne Wojcicki and Linda Avey. Anne Wojcicki was the then-partner of Sergey Brin, who was the co-founder of Google. And the idea was, “we're going to let people Google their genome.” They were not the only ones. At that time, around 2007, there were many companies that came on board, including Navigenics, deCODEme - in Iceland - others that I forget the name of, but there were many. The two big ones were Navigenics and 23 and Me. 23 and Me distinguished itself from Navigenics by attempting to turn genomics into the new hip thing that, if you were in the In Crowd in Silicon Valley this is what you would do. They were trying to rework the meaning of genomics from something that was scary to something that was hip and cool. There was this article in the Style section of the New York Times during Fashion Week in New York City in 2008 in which there were spit parties, in which the rich and famous came and drank their cocktails and spat in tubes and got their DNA sequenced. I always wanted one of the 23 and Me beanies. I got a T-shirt, not a beanie. When I visited, they had little toys in the bathroom. They spent a lot of money on their colors they used for the company. If you look at their website, it's a very specific palette of colors and they were chosen to make people feel like this is a cool and hip place, whereas Navigenics distinguished itself by being the serious company, but they also were concerned about color. So, when you got your reports back, you know, the ones that put you at high risk for some disease or a higher risk, according to them, were not coded red, they were coded orange. So, it wasn't red and green which is what Eric Lander, a big genome scientist, was using in his representations of pharmacogenomics right after the genome project. No, no, red and green - orange for, I guess, caution - I don't know. I don't know what the other one was - purple or something, I don't know. But it was not red and green. So, I'm just telling you this because these companies put a lot of energy into trying to rework the meaning of genetics. And the other thing 23 and Me did was it said, “unlike the NIH, we're not going to go and solicit from people that we choose to give samples. We're gonna let people come to us. And we're not going to advertise. You got to be in the know.” Although they did reach out early on to people who skydive because they were interested in people who were risk takers. They wanted to be sure that this was ethical. So, “we're gonna go to those people who take risks anyway.” So, 23 and Me tried to distinguish itself by turning this whole thing around and saying, far from a concern, that you should be worried about your privacy rights, you should have the right to own your own DNA and to come out here and get it and have access to it. So, it should not be kept private from you. You should own it. That's what they championed, and they argued that they were democratizing genomics. They use that language of democracy.

CARL PEARSON: So, the idea, then, would be that if people willingly provide their genetic material then 23 and Me, or Navigenics, or one of these companies would eventually create a very large database, something that the genomics community been trying to accomplish for a long time. This was a new pathway to building up a large database.

JENNY REARDON: Yeah, their vision was to be the largest DNA database in the world. And their vision had always been to make a resource that would be of interest to the pharmaceutical companies. At the time, Sergio Brin and Anne Wojcicki were married. Sergey Brin made it known that his mother had Parkinson's. And part of the motivation of Sergey and Anne Wojcicki was to come up with a cure of some kind for Parkinson's for their son, in case their son Benji had it. This is true of many - I think many of the stories in Silicon Valley, that there is a personal story behind them. “Someone in my family has this disease,” and that becomes the motivation for why they're doing it. It's not as easy as a strict corporate greed story, or it complicates it. It also makes it into a big story which helps them build the companies. But I think a lot of people didn't understand that that was always 23 and Me’s goal. It's become much more explicit now. They've made big deals with pharmaceutical companies in the last year or so, the last couple of years they've been doing this. But yes, this is their idea, is that, “if we wait for the government or if we wait for big medicine operations like Stanford to do this, we're never gonna get there. We need nimble, small startup companies to do this with novel ideas. It's the Silicon Valley idea that we need to disrupt.” This was meant to be a disruptive mode of doing genomics, and it was. The FDA, as some may know, ends up telling 23 and Me they have to cease and desist because the question was, “did you get FDA approval? You know, are we dealing with things that need to go through the Federal Drug Administration?” They were arguing, “no, we're not creating a drug.” So, you have information that's in this weird nether land between, “is it - is this essentially treating people or not? Is this a medical treatment or not?” And they claimed it was not. And the FDA ultimately decided, “actually, we need to decide if you need FDA approval, and if we need to have some kind of doctor involved in the process.” And this became a huge struggle. At first Anne Wojcicki and the company ignores FDA - doesn't respond. Ultimately, that was a bad strategy. Maybe it was a good strategy. It gave them more time where they weren't able to offer the health part of their services. But, ultimately, they do get shut down, and they end up working with the FDA. And after several years, they were able to come back online with FDA approval, which is what they do now have. But yes, their argument was, “the federal government is too slow. We're going to do it outside of the federal government. We're going to make this happen. Benji our son is getting older. We want a cure for Parkinson's.” That was the vision.

(SOUNDBITE OF THE BEST PESSIMIST’S “IT’S ONLY WORDS”)

CARL PEARSON: You're listening to Profiles on WFIU. I'm Carl Pearson. Today's guest is Jenny Reardon, professor of sociology at UC Santa Cruz, and the author of The Post-Genomic Condition.

So, in a recent paper - a paper that I guess you're working on now - you put it this way, that maybe what we need to be doing is asking awkward questions about science. And you quote a New Zealander who worked in the early stages of UNESCO, John Beaglehole, and you quote him as saying, “are the main things we need for better understanding, more education and more science; or more accurately, better understanding of education and science?” And so, I thought I would ask you if you could speak a little bit about what you mean by asking awkward questions about science, and tell us a little bit about your bike rides through Kansas.

JENNY REARDON: Yes, my very different project of biking through Kansas. Well, the stories that I've been relaying - we've been talking about so far - are probably ones that are a little bit unfamiliar to people about genomics. They're not the stories you usually hear about it. You're usually hearing about either some patent dispute or some privacy violation or some celebration of some new breakthrough, not the behind the scenes, geopolitical machinations of how we're going to represent the human genome. It's just not what we hear because, mostly, we are told that good science has nothing to do with politics; that it's a problem when corporations take over. That's corporate corruption of science. That's the kind of narrative we have. We have a hard time asking the more awkward questions, which are about the ways in which politics have always been a part of science. And Beaglehole is speaking at the end of World War II. The world is in disarray. The concept of race was the biologist's atomic bomb. While the physicists had blood on their hands from the atomic bomb, the biologists had blood on their hands from the concept of race. The question was, “what do we do about this idea that human beings are divided into different races?” And one idea was, “well, we get rid of the divisions. We're not going to have nations anymore. Well, we may have nations, but they're going to be superseded by something called the United Nations, and human beings are going to be the subject of rights, not nations with citizens with rights. We're going to have human rights.” And so, the United Nations forms. And then along with it, the United Nations Educational Scientific and Cultural Organization was an arm of the U.N. And the idea was that education, science and cultural understanding would help rebuild the world. Beaglehole is speaking at a meeting of UNESCO, where they're talking about the mission of UNESCO some late fall evening in Paris in 1948. The Parisians, including the prime minister of France, is celebrating this notion of UNESCO and of us all coming together and understanding each other. And then there were those from the Global South, not just Beaglehole, who said, “you talk about the United Nations and about how we're all coming together, but you know what? We still have colonial rule in a lot of parts of the world. Colonialism is still a part of our reality.” The other thing Beaglehole ends up saying is, “human rights. It fits well in these grand boulevards of Paris. And when you're here, like, you should also be a Frenchman, that we all should be Frenchmen.” And then he starts into his awkward thing about, “what is a Frenchman? And what is human understanding? And what shall a Frenchman understand about an Englishman? Should a Frenchman know that an Englishman reads Dickens, and a Englishman know that a French person reads Proust? That's only one of millions of things we could know about what the English and the French do. How are we going to decide of those many things what we should know? Same thing with science. What is science? Who asked the questions? Whose priorities? Whose values?” And he recognizes that these are awkward questions. And he says, “but we must ask awkward questions.” And I think that's exactly true. I think Beaglehole was correct. We live in a time now where we also hope that science will help us to oppose authoritarianism. We're seeing the rise of authoritarianism around the world, and we also have seen the rise of a movement to defend science. But defending science without asking the awkward questions about what science is and how it forms can backfire, as it did with UNESCO. UNESCO attempted to get scientific experts together to create a statement on race. And they hoped what those experts were gonna say is that there are no divisions between human beings. We're just one human species and race doesn't exist at a biological level. Well, they convened a group of experts that included mostly sociologists and some cultural anthropologists and they wrote that statement. But then geneticists and physical anthropologists were up in arms and penned their own statements saying “no, this is not true. This is irrational. This is ideological. This is a sign of Communism taking over.” And UNESCO had to walk back, or didn't have to, but it did walk back on its statement. And it convened a second group of statements basically making manifest Beaglehole's point: who represents science? Did that first group of experts represent the expert view on race, the scientific view on race? UNESCO ultimately had to say, “no, they didn't. Now we're gonna have a second group of experts.” The then-director of race relations at UNESCO felt he had been a little bit misled. Why had no one told him about these diverse views about race before we decided to put UNESCO out on a limb, attempting to create this expert statement that we printed tens of thousands of copies of and translated into many languages and got in the New York Times and Chicago Tribune? Before we did all that, maybe we should have had a conversation about what the diverse views might be out there in the scientific community and how we are going to be able to respond to that. Absent asking those kinds of awkward questions about science, we go down a kind of naive path that opens us up to critique, then ends up undermining science. The scientific method is a valuable kind of method for understanding the world - the idea that we should attempt to use empirical data to understand our world, to try to leave our biases at the door - these are all important ways of trying to understand the world. But if you're going to act as if it's somehow pure, untarnished, there's no politics involved - that opens you up to hurting that method, not promoting it, but of actually making it subject to easy critique. How do we have the awkward conversations? We're living in a moment that's polarized, that's fractured, and there's a question about how we even communicate with one another about difficult things. There's no safe conversation. We've attempted to create discourses that create safety. Science is safe. It's outside of the realm of politics. We can believe that. But it's not true. And then we end up in an unsafe place where we are being attacked, those of us who believe and want to defend science. In the wake of the last election, I decided to go back to my own home state of Kansas to start a different project involved with awkward questions, which is, “how do we have a question about the political conditions of this country at the moment?” So, I'm actually biking across Kansas. And you don't bike across Kansas and just ask people about their political views. But you can bike across Kansas and ask people about what they love and care about, which is the land. And it's also a land that I love - the prairie. So, I'm going across Kansas and talking to farmers and ranchers, ecologists and other denizens of the prairie about how to know and care for the land. Some may know about the dustbowl in the 1930s. Billions of tons of soil blew from the dust bowl region of the US to the eastern coast of the United States, ruining lives. People suffered tremendously from diseases caused by dust. Droves of cattle died from inhalation of sand and dirt. Many people left and went to California, the so-called Okies that Dorothea Lange photographed. But in the 1940s they discovered oil and gas in that part of Kansas. And after they discovered oil and gas they discovered water in the Ogallala Aquifer, or at least they were able to reach it now that they had carbon power to get down there. And what was once the dustbowl became one of the richest agricultural areas in the world. The ability to pump and irrigate has meant that currently 20 percent of all cattle slaughtered in the U.S. happens out in this part of Kansas, because you're able to grow corn out there, which you couldn't before, ‘cause corn is a water-thirsty crop. But the water is running out. So, what are we going to do? It's an awkward question - an important one to be asking. So, how do we find ways of having those conversations is part of what I'm interested in. In this case, the bike becomes an important diplomatic ally. Turns out, when you're on a bike it's much easier to talk to people because you're on an adventure. People want to know, “how did you get here? And why are you here?” And it always leads to amazing conversations. And somehow the awkwardness can be addressed because of the mutual interest. I'm interested in you. You're interested in me - not by way of any way we ever thought might be possible, because I didn't expect you to show up on a bike. And maybe it's my third attempt to think about a more hopeful world, you know, after the diversity project and then the second book. I keep trying, you know? And we'll see with the biking project.

(SOUNDBITE OF THE BEST PESSIMIST’S “MAKE A WISH”)

CARL PEARSON: Jimmy Reardon, it's been a pleasure talking to you today. Thank you very much.

JENNY REARDON: Thank you.

CARL PEARSON: I've been speaking today with Jenny Reardon, University of California Santa Cruz Professor of Sociology and author of Race to the Finish, and The Post-Genomic Condition. I'm Carl Pearson. Thanks for joining us for Profiles.

MARK CHILLA: Copies of this and other programs can be obtained by calling 812-855-1357. Information about Profiles, including archives of past shows, can be found at our website, wfiu.org. Profiles is a production of WFIU and comes from the studios of Indiana University. The producer is Aaron Cain. The studio engineer and radio audio director is Michael Paskash. The executive producer is John Bailey. Please join us next week for another edition of Profiles.

(SOUNDBITE OF BELA FLECK AND THE FLECKSTONES' "BLU-BOP")

 

Jenny Reardon

Jenny Reardon (Photo by Melissa De Witte)

Jenny Reardon is a professor of sociology and the Founding Director of the Science and Justice Research Center at the University of California, Santa Cruz.  Her research draws into focus questions about identity, justice, and democracy that are often silently embedded in scientific ideas and practices.

Jenny’s training spans molecular biology, the history of biology, science studies, feminist and critical race theory, and the sociology of science, technology and medicine. She is the author of Race to the Finish: Identity and Governance in an Age of Genomics and The Postgenomic Condition: Ethics, Justice, and Knowledge After the Genome

Her insights into the ways that genetics and genomics shape, and in turn are shaped by, ideas of race and justice, have earned Jenny Reardon fellowships from the National Science Foundation, the Max Planck Institute, the Humboldt Foundation, the London School of Economics, the Westinghouse Science Talent Search, and the United States Congressional Committee on Science, Space and Technology.

She spoke with Carl Pearson.

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