How the Revolution in Genomic Science Is Shaping American Society
JENNIFER HOCHSCHILD
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Dedicated to Melissa, who I miss all the time, and to Barbara Hochschild, who lived through the century in which genetics moved into society
There is in biology at the moment a sense of barely contained expectations reminiscent of the physical sciences at the beginning of the 20th century. It is a feeling of advancing into the unknown and [a recognition] that where this advance will lead is both exciting and mysterious. . . . The analogy between 20th-century physics and 21stcentury biology will continue, for both good and ill.
The Economist, 2007
We possess the ability to . . . direct the evolution of our own species. This is unprecedented in the history of life on earth. It is beyond our comprehension. And it forces us to confront an impossible but essential question: What will we, a fractious species whose members can’t agree on much, choose to do with this awesome power?
Jennifer Doudna and Samuel Sternberg, 2018
Genomic science is too big of a train to derail, the work will happen, so social scientists need to be involved in order to contribute to its appropriate interpretation.
Social science expert on genomics, 2018
Acknowledgments
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2. The Basic Framework: Nature and Nurture, Risks and Gains
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Preface and Acknowledgments
A 2020 advertisement by Memorial Sloan Kettering Cancer Center promotes innovative, genomics-based treatment. Its video version asserts that “there will never be one cure for cancer. There will be millions,” and promises “more precise, personal, innovative care.” The slogan is “More science. Less fear.” The aim of Genomic Politics is to probe that slogan. I do so not through science, examination of medical cases, analyses of the economics of cancer care, or the many other frames employed by many excellent authors, but as a political scientist: I examine the politics and ideology surrounding the societal use of genomic science in the United States. The book analyzes disputes in which people who seek the same outcome come close to accusing one another of murder, and probes judicial decisions bringing together Supreme Court justices who agree in fewer than 5 percent of their other cases. It explores racial differences in views of “biogeographic ancestry” testing, and the politics around research on whether Covid-19 disproportionately attacks African Americans or men because of their genetic makeup. Genomics is, as Memorial Sloan Kettering emphasizes, science—but as the hospital well knows, it also encompasses fear and scorn, hope and excitement. Like any hugely important enterprise, its societal uses are intrinsically political and ideological—and like Memorial Sloan Kettering Cancer Center (though without its financial incentive), I want to bring what I know about genomics into public visibility.
First things first: what is genomics? The National Human Genome Research Institute (NHGRI) defines it as “the study of all of a person’s genes (the genome), including interactions of those genes with each other and with the person’s environment.” The genome, in turn, is “an organism’s complete set of DNA, . . . [which] contains the information needed to build the entire human body.” A metaphor helps. A single strand of DNA, residing in almost every human cell, is made up of about 3 billion base pairs, each a two-unit combination of the chemicals adenosine, thymine, cytosine, and guanine; we can analogize the base pairs to letters of the alphabet. The 3 billion letters combine into words, about 20,000 of which are “readable” genes. Genetics is the study of individual words, small combinations of words in phrases
and sentences, or words embedded in not-yet-interpreted “gibberish.” The words, in turn, are strung together in such a way that they comprise an intelligible, meaningful book that has uninterpretable sections but is nonetheless much more than the sum of its parts. Genomics is the study of that book. Genomic scientists may examine individual letters, words, the supposed gibberish between words, paragraphs and chapters, concepts and insights that run through the whole volume, and the ways in which that book slots into the whole “library” of the environment and other organisms. When we understand the book and its context, from each letter through all the ideas and the interactions among ideas in many books, we will understand human heredity.
None of us, of course, comes close to understanding human heredity; perhaps we never will. But each analyst is seeking a partial answer to the question posed by sociologist Jenny Reardon: “Now that we have ‘the human genome sequence,’ what does it mean?” Her search focuses on the sociology of science and the moral values associated with intervention in local communities.1 Memorial Sloan Kettering’s search is for the “precise, personal” patterns of base pairs, genes, and genomic interactions that will cure particular patients of their distinctive cancers. As a political scientist, I search for answers to Reardon’s question in the exercise of power, struggles around governance, choices among policies, the distribution of outcomes, and ideological worldviews—that is, genomic politics.
I would never have made it far into this search had it not been for Larry Jacobs’s casual suggestion that I apply for a Robert Wood Johnson Foundation Investigator Award in Health Policy Research, something he has surely forgotten. It was a surprising suggestion: I am a scholar of American racial, class, and immigration politics. But after attending conferences on the medication BiDil and serving as a discussant for Mary-Claire King’s 2006 Tanner Lectures at Harvard University, I was hooked. Maya Sen, then a Ph.D. student in Harvard’s Government and Social Policy Program, joined me as coprincipal investigator, and with the advice of many experts, we received an RWJF Award in 2010. So in addition to Larry Jacobs, my first and deepest thanks go to the Robert Wood Johnson Foundation, which took a chance on an eager but fairly ignorant applicant. I hope Genomic Politics, though it may not bear much resemblance to the proposal’s promises, turns out to be worth the grantor’s confidence.
Of course, the book rests on the shoulders of very many others as well.
Primary is Maya Sen, who was a partner in developing the focus, designing
the GKAP survey, identifying interview subjects, analyzing data, getting control over the scholarly literature, specifying the theory, and everything else involved in pushing a large project forward. She is co-author on all five of the articles published so far out of this research. Maya’s work has moved in a different direction since I began to focus intently on this book, and she cannot be held responsible for anything in it—but I could not have written it without our cherished collaboration.
Several others have contributed invaluable ideas, words, data analyses, theoretical framings, and other forms of intellectual companionship. They are co-authors on one or more articles, with more collaboration to come, I hope: Alex Crabill, Meredith Dost, Mayya Komisarchik, and Elizabeth Suhay.
A chief virtue of teaching at Harvard is the amazing talent and energy of its students. If I occasionally get frustrated in trying to keep up with them, it is nonetheless always rewarding to make the attempt. A not-so-small army of undergraduate and graduate research assistants made the later chapters of Genomic Politics possible, along with contributing the essential and ephemeral element of belief that there really was a project here worth doing. First among equals are Chris Chaky, Mara Roth, and Ryan Zhang, to whom I am very grateful. They are followed in close succession by Andrew Benitez, Raphael Broh, Angelo Dagonel, Kaneesha Johnson, Scott Kall, Gabriel Karger, Layla Kousari, Cara Kupferman, Shom Mazumder, Natalie Padilla, Ben Polk, Anna Remus, Nicholas Short, Claire Sukumar, Mikael Tessema, Ifeoma Thorpe-White, Bruno Villegas, Max Weiss, and Claire Wheeler.
In addition to those already named, Angie Bautista-Chavez, Kristina Brandt, Graciela Carrasco, Medha Gargeya, Michael Anthony George, Ben Gruenbaum, Seth Henderson, Mayya Komisarchik, Brendan McElroy, Gabriela Malina, Angela Primbas, and Shanna Weitz all deserve gratitude and perhaps an apology for their heroic work coding articles by social science experts in genomic science. Chris Chaky and Ryan Zhang were primarily responsible for pulling thousands of coded items on dozens of spreadsheets into a coherent and usable database.
Along with learning about genomics, I learned a lot about writing surveys over the past decade. For that fascinating and useful education, I thank Patrick Moynihan, Chase Harrison, Poom Nikulkij, Wendy Mansfield, and Tom Smith.
A wonderful group of genomics experts served as the Advisory Committee during the years of the RWJF award. I expect that RWJF would
not have had half as much trust in Maya’s and my ability to pull this project off if those committee members had not agreed to help it develop; I certainly would not have done so. I thank David Altshuler, Michele Caggana, Hank Greely, Evelynn Hammonds, Steven Pinker, and Patrick Sturgis for their wise comments. I am still using notes from our conversations to help shape my arguments.
Many colleagues have listened to, read parts of, or argued about some or much of this book. In addition to co-authors and student assistants, they include C. Anthony Broh, Henry Louis Gates Jr., Evelynn Hammonds, Macartan Humphreys, and Wendy Roth.
Cynthia Morton brought me (as “the ELSI component”) into a medical genomics research project that has taught me a great deal about how clinicians incorporate genomic medicine into practice. We should all be so lucky as to have medical professionals with the skill, commitment, and creativity of this group. The project is Sequencing a Baby for an Optimal Outcome (SEQaBOO), Cynthia Morton, Ph.D., Principal Investigator, Brigham and Women’s Hospital. It is funded by the National Institutes of Health (http:// seqaboo.bwh.harvard.edu/).
Many institutions and their individual embodiments have made it possible for me to complete this project, albeit too slowly. Harvard University, especially the Departments of Government and of African and African American Studies, the Harvard Kennedy School, and the Center for American Political Studies, provide—as well as way too many distractions—arguably the best environment in the world to teach, do research, learn, and engage in all of the other activities that make an academic life so privileged. Harvard’s research librarians are amazing; I took full advantage of the expertise of Diane Sredl, Valerie Weis, and Michelle Pearse. The Eli and Edythe L. Broad Institute of MIT and Harvard took the unusual step of admitting me, a social scientist, as an Affiliated Member; much of what I know about genomic science I have learned from its extraordinary seminars, publications, and community. The John W. Kluge Chair in American Law and Governance at the Library of Congress (2011) and a Fellowship at the Straus Institute for the Advanced Study of Law and Justice, New York University School of Law (2013–2014) provided the settings and collegiality so essential for success in the strange enterprise of staring at a blank computer screen and willing it to fill with words and numbers.
The National Science Foundation, through its support of TESS (TimeSharing Experiments for the Social Sciences) and of the General Social
Survey, provided the structures for survey experiments and questions. My thanks to the American taxpaying public.
Participants in many seminars and panels encouraged, criticized, doubted, speculated, and pushed me into what I hope is a better book than it would have been without their help. Some events were held at annual meetings of RWJF Investigator Award recipients and annual meetings of the Midwest Political Science Association and the American Political Science Association. Others were held at Columbia University, the Harvard Kennedy School, Harvard’s Weatherhead Center for International Affairs, New York University Abu Dhabi, the University of British Columbia, Vanderbilt University, and an annual meeting of the American Association for the Advancement of Science. A year as a Phi Beta Kappa Visiting Scholar in 2016–17 enabled me to meet, and try out ideas on, professors and students at Clark University, Furman University, Macalester College, University of Missouri, Randolph Macon College, Virginia Polytechnic Institute and State University, Sewanee: The University of the South, and Skidmore College. Delivering a keynote speech at the WZB Berlin Social Science Center enabled a seminar at which members gently strove to update my knowledge of popular culture beyond GATTACA.
I am in debt to the social scientists, genomic scientists, and other experts who gave their time and expertise so generously in interviews and survey responses. Directly asking experts for their views deepens one’s sense of genomics as both a fascinating research subject and a Rorschach test of hopes, fears, and mental maps. The observations of these especially knowledgeable and committed actors, who care enough about the politics and ideology of genomic science to yield to my importuning for some of their valuable time, are fascinating and revealing. Since many spoke openly after being promised confidentiality, I cannot thank them by name. I hope I have done justice to their ideas.
The various surveys, and questionnaires to experts, received the following approvals or exemptions from Harvard University’s Institutional Review Board: F-19007-101; F-19928-101; F-19209-101; F-19209-102; F19209-103; F22804-101; F19928-103; IRB 17-0938; IRB19-0704.
I am deeply grateful to my editor at Oxford University Press, David McBride. I was thrilled by his immediate and continuing enthusiasm for Genomic Politics, and he sat on my metaphorical shoulder throughout revisions. I have worked with David in various guises; he is a friend as well as a trusted guide to the mysteries of publishing. Holly Mitchell, the assistant
Preface and Acknowledgments
editor, is friendly, helpful, and just a little stern about deadlines, exactly as she should be. Cheryl Merritt expertly and efficiently guided me and the manuscript through the many stages of production. Dalton Conley and three anonymous reviewers raised the difficult questions and made the sweeping suggestions that every author dreads and cherishes. That they all concentrated so well in the middle of a frightening pandemic makes their help that much more valued.
Finally, my family. Tony Broh continues to be at the center of my life. While writing this book, I have watched Eleanor Broh, Raphael Broh and Sarah Hutcherson, and Henry Hochschild grow into adulthood, overcome terrible obstacles, find meanings for their adult lives, and love and laugh. I am so privileged to have them as my family. This book is dedicated to my sister Melissa Trier Hochschild, whose life was too short, and to my mother, Barbara Elisabeth Hochschild, who at age 99½ still watched CNN all day and still asked me when that genome book was ever going to be finished. She aimed to live until it was done, and she almost made it.
1 Introduction
“There Be Monsters”?
The use of science and technology in an effort to enhance human beings is taking us beyond the outer edges of the moral, ethical, and religious maps bequeathed to us by previous generations. We are in terra incognita, where the ancient maps sometimes noted, “There Be Monsters.”
Al
Gore, 2013
At the turn of the twenty-first century, few Americans had heard of genomics. The term and its cognates had never appeared in a public opinion poll. The phrase “Human Genome Project”—an enterprise to which taxpayers in several countries were contributing almost $3 billion—appeared only 125 times (less than a dozen times a year) in American newspapers between May 8, 1989, and January 1, 2000.1 Twenty years later, genomic science is everywhere. DNA tests determine whose dog soiled the sidewalk, and whether a dog of questionable ancestry is acceptable to a co-op board in New York. DNA tests determine if the fish in your sushi is really salmon, who poached deer or elephants, and who stole sheep. Genomicists are working to reverse the extinction of wooly mammoths and to restore genetic diversity to the cancer-ridden Tasmanian devil. The consulting firm Battelle reports that oil and gas developers are tracking polar bear activity through DNA left on their paw prints. The dating service GenePartner sells the possibility of finding one’s mate through genomic tests (“Love is no coincidence: matching people by analyzing your DNA”). At home during a Covid-19 lockdown, you can play the board game Metanon: The Biocode Adventure with your children while glancing at the poster of your own or your loved one’s DNA that is the focal point of your living room art collection (Figure 1.1).2
In a less frivolous vein, DNA tests determined if the person assassinated by American troops in 2011 really was Osama bin Laden. DNA tests were used to identify 7,000 victims of the 1995 Srebrenica massacre and to reassemble scattered body parts. They can identify bone fragments of soldiers lost in World War II. DNA tests using stored rape kits can point to perpetrators, or exonerate people convicted of a felony, years after a sexual assault occurred. Genomic research can find the cause of rare diseases, and gene therapies contribute to fighting the “monster inside” of cancer, brain disease, retinal dystrophy, or junctional epidermolysis bullosa. Genetically modified foods deliver vitamins to malnourished babies; genetically modified mosquitoes might eliminate dengue fever or malaria; genetically engineered bacteria might clean up oil spills. Prenatal genetic therapy might prevent devastating diseases in newborns; germline gene editing might someday do the same for generations to come. Genetic ancestry tests permit a New York resident named Mika Stump, who grew up in foster homes, to declare, “[Now] I have a place where I can go back and say, ‘This is who I am; this is my home.’ That’s something I never, ever expected to say.” An economist shows that DNA databases can help to convict the guilty, exonerate the innocent (sometimes after decades of imprisonment), “deter crime by profiled offenders, reduce crime rates, and [be] more cost-effective than traditional law enforcement
Figure 1.1 “From life comes art”
Source: DNA11
tools.”3 A smartphone can use gene editing techniques to test for Covid-19 infection and measure its severity.
Most vividly, in 2020 genomic sequencing of the SARS-CoV-2 virus enabled unprecedentedly rapid development of highly efficacious vaccines against Covid-19. Using mRNA (messenger RNA) as the foundation of a new strategy for developing a vaccine that primes the immune system against the targeted virus, scientists in half a dozen countries created, tested, and distributed vaccines in less than a year. That compares with the average over the past half century of a decade to develop a new vaccine.
Genomic science is not all entertaining or lifesaving; its societal uses can be unsettling, even dangerous. Perhaps there really are monsters on the perimeters of the map of genomics technology; as The Economist notes in an observation quoted as the first epigraph for this book, biology’s advance into the unknown is “for both good and ill.” Forensic biobanks may create a system of what law professor Jeffrey Rosen calls “permanent genetic surveillance” of all Americans. Disseminating genetically modified food could introduce “food totalitarianism . . . monocultures, deadness,” according to environmental activist Vandana Shiva. If genetically modified mosquitoes are released into dengue-ridden communities, warn biologists James Bull and Harmit Malik, “escape of a GDS [gene drive system—a genetic modification designed to spread rapidly through a targeted population] into a beneficial species could spell its doom. . . . Stopping a GDS once it is released is not easy—maybe not possible.” Prenatal genetic interventions and gene editing raise the threat of everything from designer babies to the transformation of gorillas into weapons of mass destruction to the reinvention of humankind (as in, respectively, the movies GATTACA, Rampage, and Elysium). Neuroscientist Diane DiEuliis and her co-author “posit the strong likelihood that development of genetically modified or created neurotropic substances . . . represents a novel—and realizable—path to creating potential neuroweapons.” Identifying distinctive genetic traits to partly explain the disproportionate vulnerability of people of color to Covid-19, writes bioarcheologist Sonia Zakrzewski, is “problematic and shocking. . . . Ascribing the disparity of Covid-19 impacts on BAME [Black, Asian, and minority ethnic background] groups as genetic masks the more likely, and more pernicious, causes: systemic inequalities.” Most simply, wrote a reader to the editor of the New York Times, “we don’t want our children or their grandchildren to suffer the horrors of a poorly run experiment gone outrageously amok.”4
Behind these lists, which could be doubled or tripled, lies the most unsettling point: unraveling “the mysteries of the DNA molecule,” wrote the pediatrician Jean-François Mattei, “raises the question of the place of mankind in the universe.” If geneticist George Church is right that “synthetic biology will reinvent nature and ourselves,” is that a reason to celebrate, shut it down—or create commissions, write regulations, and encourage citizen scientists? Exciting and mysterious indeed, as The Economist says.5
People will respond to this Janus-faced advance into the unknown in different, perhaps antagonistic, ways. Deep, wide, and long-lasting societal contention around important issues is inevitably political and probably ideological. To make sense of such contention, I begin by outlining a basic framework of four stances toward genomic science that, I will argue, collectively capture Americans’ main positions about genomics as a whole and its particular uses. Unlike most other political disputes in the United States today, these stances do not line up with partisan affiliation (although later in Genomic Politics I explore ways in which partisanship might be creeping in). Nor are any of them obviously “left-wing” or “right-wing”; they diverge along different dimensions. Religious conviction about genetics may permit an alliance between African Americans and Republicans; the drive to find solutions to policy problems may bring social constructionists and geneticists much closer than either set of actors can envision.
After I outline the basic framework that structures the book, the Introduction offers brief discussions of morally and empirically fraught disputes in order to make more concrete the breadth, depth, and unusual nature of contention over genomics. These illustrative disputes range widely, from a race-based medication called BiDil to DNA ancestry testing, databases used in the criminal justice system, and prenatal gene therapy or editing. I then begin the process of mapping the disputes onto the basic framework, in order to signal to readers what lies ahead in the next eight chapters. As I proceed, we will explore these disputes in more detail, examine opinions held by the public and by genomics experts, and consider strategies for handling these political hot potatoes. Many pages from now, I conclude by using all of this material to show how the United States can advance into the exciting and mysterious genomic unknown in a way that is both democratic and responsible, despite the fact that we are a fractious species whose members can’t agree on much.
The Basic Framework
The basic framework that shapes the narrative of Genomic Politics is a welltested classic: a 2 × 2 grid with four quadrants, each of which sits in the intersections of two independent dimensions. The logic is easily grasped if we consider two dimensions of color: light to dark, and red to blue (Figure 1.2).
The four intersections of those two dimensions—the quadrants—are light red (which we call “pink”), dark red (which we can call “crimson”), light blue (“baby blue”), and dark blue (“navy blue”). Like my basic framework, the 2 × 2 color framework is imperfect, but good enough to work with: pink and baby blue have one dimension in common; pink and crimson have a different dimension in common; pink is more different from navy blue than from either crimson or baby blue.
Following that simple logic, Figure 1.3 shows the skeleton of the basic framework of Genomic Politics.
The vertical dimension, corresponding with hue, focuses on one’s knowledge of or belief about the impact of genetics on behaviors, traits, or physical conditions. It ranges from the assertion that “genetics is really important” to the assertion that “genetics is relatively unimportant or not relevant at all.” The horizontal dimension, corresponding with color, focuses on a person’s judgment or preferences about risk-taking (the basic framework applies to other entities as well as people, but we save that for later). It ranges from the sense that “overall, new technologies are beneficial, although we must beware possible harms” to “new technologies risk serious harms, even if they also carry some benefits.”
The four stances toward genomic science that I explore throughout this book correspond to the colors. The top left quadrant “Enthusiasm” occupies the position of pink; its proponents perceive genetics to explain a lot
1.2 Logic of a 2 × 2 typology
Figure
about human behaviors and traits, and they are excited about the benefits to be gained from the increasing use of genomic science. “Skepticism,” on the top right, corresponds to baby blue; occupants of this quadrant agree that genetics explains a lot about human behaviors and traits, but fear that deployment of genomic science will harm society more than benefit it. “Hope” occupies the crimson quadrant on the bottom left. The Hopeful perceive genetics to be relatively or completely unimportant in explaining important human traits and behaviors, but they believe that other human or even divine actions can improve lives and society as a whole. Finally, the navy blue quadrant is represented by “Rejection,” on the bottom right. Its occupants perceive genetics to have little or no influence on important traits and behaviors, and they have slight hope that any intervention will significantly improve humans’ lot. Rejectors have the clearest vision of the monsters on the edges of the genomics map.
This basic framework is the vehicle for the three central purposes of Genomic Politics. The first goal is explanatory. Much of this book demonstrates how attitudes toward, prescriptions for, and policies about many uses of genomics technology are illuminated by locating them in one or another quadrant. The second goal is evaluative. Underlying each quadrant’s perspective are moral stances, whether expressed as an ideology, a policy, a fact, or a demand. The best way to assess each moral position is to consider it in relation to the others—just as we understand pink better when we juxtapose it with both crimson and baby blue.
Figure 1.3 The basic framework of Genomic Politics
My third goal in using the basic framework is prescriptive (with a tinge of prediction). Although views of and goals for societal deployment of genomic science are intrinsically and inevitably political, they are not (yet?) partisan: as I show in this and later chapters, one can find liberals and conservatives, Democrats and Republicans in all four quadrants. To me, this is very good news. As a political scientist, I am enthusiastic about farreaching disputation; how else should a democracy as diverse and assertive as ours determine how to take the right action—or any action—on new and complex public issues? But I am not a fan of strong partisan affiliations, since they tend to shut down constructive political debate. So my main prescription will be that Americans entertain an array of possibilities for working out how to govern genomics. I see suggestions of mindless partisanship creeping into this arena, like so many others—as I write, most vividly around reactions to a genomics-based Covid-19 vaccine—but I hope that the logic of Genomic Politics can assist readers to develop and engage with alternatives to blindered group loyalties.
BiDil: Race-Based Medicine
The basic framework will not deserve to be adopted unless it explains intense and complex battles around societal uses of genomics. My initial task, then, is to describe a few such battles and begin to show how deploying the framework makes sense of them; later chapters take up that task in fuller detail.
In 2005, the Food and Drug Administration (FDA) approved BiDil, “a drug for the treatment of heart failure in self-identified black patients.” It was the first time in the United States, perhaps anywhere, that approval of a medication was linked to the race of its target recipients. A general population study of the medication had demonstrated no overall benefits of its use, but hinted at benefits for its small sample of Black participants. A follow-up study among self-identified Black patients with severe heart failure apparently showed dramatic success; on that basis, the FDA gave its approval, unusually. 6 As the FDA’s news release explained:
Today’s approval of a drug to treat severe heart failure in self-identified Black population is a striking example of how a treatment can benefit some patients even if it does not help all patients. . . . The information presented to the FDA clearly showed that Blacks suffering from heart failure will now
have an additional safe and effective option for treating their condition. In the future, we hope to discover characteristics that identify people of any race who might be helped by BiDil.
BiDil was, in short, “a step toward the promise of personalized medicine.”7
Before approval, the FDA’s Advisory Committee on Cardiovascular and Renal Drugs had spent considerable time discussing whether to recommend this novel move. One member asked if “some gene” could explain BiDil’s greater efficacy among Blacks than Whites; the cardiologist who led development of the drug and its subsequent trials responded that “the working hypothesis has been that there is evidence for reduced nitric oxide bioactivity in African American populations on average compared to White populations.” Another committee member queried whether Black self-identification would be an appropriate indicator for prescription. Proponents answered rather lamely that they “did not have any other biologic markers, other than self-identification,” and that “it is consistent with FDA guidelines with regard to collecting ethnicity or race in clinical trials, that Black or African, self-identified African Americans is the method of doing this.”8 Despite continued concern about how close the match is between self-identification and genetic characteristics, the committee voted in favor of FDA approval.
As the Advisory Committee’s discussion hinted, BiDil was controversial even before approval. At a public hearing, the president of the International Society on Hypertension in Blacks, the executive director of the National Minority Health Foundation, and the chair of the Congressional Black Caucus Health Braintrust all endorsed approval. A research associate at Howard University’s National Human Genome Center, however, warned that approving a race-specific drug “smacks of a kind of influence that science has shown to be untenable . . . . [Such a label implies that] all members of demographics are more similar than different due to inherited biology, and that this will not/cannot change over time. . . . Medications work on pathophysiology and clinical phenotypes, not group labels or degrees of ancestry.” Tempers rose in the aftermath of the FDA’s approval. Jonathan Kahn, an attorney and scholar who has offered the most sustained critique of the FDA’s action, wrote that “we were accused at one meeting of ‘killing people’ with our critiques of BiDil.” That may have been a bit of an exaggeration—but Jay Cohn, the lead cardiologist working with BiDil, and his co-author did observe that “by railing against the idea that blacks were singled out for this study, . . . Mr. Kahn has contributed to a backlash that has impeded clinical
use of the drug. . . . It is tragic that thousands of patients are dying because their doctors are not prescribing the drug despite the ease of their identification.” Others were rhetorically close behind. An editorialist wrote that, to some, “pooling people in race silos is akin to zoologists grouping raccoons, tigers and okapis on the basis that they are all stripey.” But as sociologist Catherine Bliss summarizes the views of some of her interview subjects, “Race-free genomics is the same as the colorblind rhetoric that contributed to racism in the South. . . . Refusing to recognize the biological processes associated with race is seen as tantamount to scientific racism.”9
All participants in this debate are committed to improving medical care and health outcomes for the underserved African American population, as well as for all those suffering from heart failure. All participants abhor racial injustice, endorse medical research, are knowledgeable about genomic science, accept the legitimacy of statistical analysis of clinical trials, recognize self-identified race to be a crude and inaccurate label, and endorse the promise of personalized precision medicine. Yet they come close to calling each other racists and murderers. Understanding why an obscure drug (that eventually failed commercially) can generate such intense anger among people who in other circumstances would be allies will give us some purchase in addressing Nobel laureate Jennifer Doudna’s and Samuel Sternberg’s question, posed in the second epigraph to Genomic Politics: “What will we, a fractious species whose members can’t agree on much, choose to do with this awesome power?”
DNA Ancestry Testing
Genealogical research is Americans’ second-favorite hobby after gardening, and the most popular target of internet searches after pornography. It lacks the life-and-death quality of seeking to alleviate heart failure, so passions do not run quite as high as in the case of BiDil. Nonetheless, people can become highly exercised about spitting in a test tube.
Various firms have offered DNA ancestry tests since the early 2000s, marketing them as a way to find particular named ancestors or possible family members, or, as the genomics testing firm 23andMe puts it, as a way to “learn about your ancestral origins, . . . to travel to the places that make you, you.” After starting as a boutique game among the cognoscenti, DNA ancestry testing went mainstream; the CEO of a biometrics company judges that “the
inflection point started in the summer of 2016, and from there it’s gone into the stratosphere.”10
Initially, journalists wrote clever, ironic articles about a “spit party” during New York Fashion Week (“It was a funny thing to be doing in a cocktail dress”), or more searching articles about people such as Reverend Al Sampson of Chicago, who traveled to Sierra Leone to give elders of Lunsar village the test results showing his Temne lineage. “Five hundred years ago my DNA was removed from here by slave traders and taken to America, so I’m coming back for my seat. My seat’s been vacant,” Sampson said. He asked for a Temne name in order “to reclaim what was taken away from me.” The Scottish tourist industry developed plans to ensure that “DNA testing will be a draw for ancestral tourists who might want to ‘walk in the footsteps of their ancestors.’ ”11 The president of a Jewish genealogical organization in an American city reports that through DNA ancestry testing, “people are learning that they had Jewish ancestry even though they grew up as Catholic. It is very powerful. There were such ruptures in family continuity and contact [due to European emigration and World War II]—people are just thrilled to find a relative.”12
Researchers have joined participants and advocates in finding value in DNA ancestry testing. Henry Louis Gates Jr., the prominent scholar of African American studies, points out that “for the first time since the seventeenth century, we are able, symbolically at least, to reverse the Middle Passage. Our ancestors brought something with them that not even the slave trade could take away: their own distinctive strands of DNA. . . . An exact match between an American’s DNA and an African’s DNA reveals a shared ancestor, and possibly a shared ethnic identity, that has been lost for centuries.” Specialists in Judaic studies similarly use ancestry testing to sort out confused or thin historical narratives. Efforts to determine how contemporary Jewish groups are historically related to one another stalled for decades, until an endocrinologist’s genome-wide analyses of 237 people from four distinct Jewish communities resolved the question. Sociologist Alondra Nelson envisions an even broader collective impact. Her research shows that the kinds of social engagement emerging from genealogy ancestry testing— “the aspirations for affiliation that inspire its use and the various kinds of relationships it may occasion”—are sites for creating connections among people with African heritage. Testers who discover ancestral links generate mutual “responsibilities and rights, and forms of exchange,” thereby “facilitating the formation of a diasporic network.”13
But controversy ensued. Fourteen social scientists and legal scholars wrote in Science that “commercialization has led to misleading practices that reinforce misconceptions.” For example, if test-takers change how they report their race or ethnicity as a result of their supposed new knowledge, “this could make it more difficult to track the social experiences and effects of race and racism.” Even more seriously, “because race has such profound social, political, and economic consequences, we should be wary of allowing the concept to be redefined in a way that obscures its historical roots and disconnects it from its cultural and socioeconomic context.” In this polite and restrained scholarly environment, the authors declare it “unlikely that companies (and the associated scientists) deliberately choose to mislead consumers or misrepresent science.” Nonetheless, they warn, “market pressures can lead to conflicts of interest, and data may be interpreted differently when financial incentives exist. . . . Unfortunately, peer review is difficult here.”14
In the more informal medium of email listservs, scholars skeptical of DNA ancestry testing are more explicit: “A basic aspect of how this field works [is that] it draws on categories produced in particular social/cultural and institutional milieus that will always include and exclude in a manner that might help some and harm others. This is not done in any kind of random way, but in ways in which those harmed are those historically disadvantaged.” Some put it bluntly: “the hocus-pocus element of arbitrary numerology” is in evidence—or even, “the racist steamroller plows ahead.”15
The fear that DNA ancestry testers will be misled or even harmed has generated its own counterreaction. As one of my interview subjects put it, with some asperity, “People have the right to gain access to [their] own genetic information. The government should [only] control companies to ensure that tests are accurate and based on real science, and to ensure that companies explain results and give the consumer access to genetic counselors.”
As with the dispute over BiDil, all disputants over racial and ethnic ancestry testing are committed to equality and sympathetic to the yearning for group identity and ancestral roots. All endorse scientific research, are knowledgeable about genomic science, accept the legitimacy of statistical analysis of genetic sequencing results, recognize that self-identified race is a crude and inaccurate label, and endorse genealogical research. Yet they too come close to calling each other racist—and perhaps corrupt, patronizing, or ignorant as well. As with BiDil, understanding what lies beneath the mutual suspicion among people on the same end of the partisan or ideological spectrum
