GENOMIC POLITICS AND EQUALITY

Abstract

Professor Jennifer Hochschild’s Genomic Politics: How the Revolution in Genomic Science Is Shaping Society is a must-read for anyone interested in where our politics about genetics in America has been and where it is going. It is also an exemplar of how to do mixed-methods social science work: Hochschild combines theory with database searches and coding of congressional acts and social science journal articles, open-ended interviews with authors of leading peer-reviewed articles and other experts (semi-structured with genomic experts),1 and two sets of relatively lengthy online surveys (one administered in 2011 and one in 2017, nicely allowing some opportunity to detect change) to arrive at a much more complete picture than I have seen anywhere in the extensive literature.Part I summarizes the book and highlights its main contributions. Part II engages with three questions on which the book has something to say, but where I think a longer conversation is warranted: (1) What explains the lack of partisan politicization on these topics? (2) How should equality theorists think about obligations of justice that stem from genetic bad luck and the possibility of redistribution? (3) What would it mean to take seriously the critiques of race as a genetic category and what would that mean for equality discourse?The book begins with some reflections on how salient genetics has become in the twentieth and twenty-first century, eschewing any attempt to offer a comprehensive account, and then jumps right into its motivating and recurring examples: the 2005 FDA approval of BiDil, the first time an approved indication was limited to a particular racial group, as a “drug for the treatment of heart failure in self-identified black patients”;2 the use of direct-to-consumer DNA testing for ancestry purposes, most notably those of Ancestry.com and 23andMe;3 the building and use of forensic biobanks and the public attention, especially in the wake of the notorious “Grim Sleeper” arrest, to their use for matching DNA from crime scenes through lower-stringency tests that allow police to identify relatives of those whose DNA was left at the crime scene;4 the use of prenatal testing for genetic markers of Down syndrome (often followed by selective abortion), among other developmental conditions; and finally human gene editing, in particular human germline gene editing (though there is some discussion of somatic editing as well).5She also introduces the theoretical framework all of the book seeks to support: that we can divide the views of U.S. respondents (the book is explicitly about those in the United States but of course may extend further) into four quadrants based on two dimensions. One “focuses on one’s knowledge of or belief about the impact of genetics on behaviors, traits, or physical conditions” ranging from “the assertion that ‘genetics is really important’ to the assertion that ‘genetics is relatively unimportant or not relevant at all.’”6 The other “focuses on a person’s judgment or preferences about risk-taking to genetics (and other) technologies” ranging 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.’”7This generates her four quadrants of stances toward genomic technologies: Enthusiasm (genetics is really important for explaining human behavior and they are optimistic about its benefits), Skepticism (genetics is really important but they are fearful about its risks), Hope (genetics has little importance in explaining human behavior but these individuals are optimistic about the benefits of technology), and Rejection (genetics has little importance in explaining human behavior but these individuals are worried about its impacts on society).8Chapter 2 seeks to further explain her four quadrants and refine the project scope (and in my view defang some early misunderstandings). She begins with airing but not resolving the utility of looking at genomics as a single, stable topic for investigation (more on this below). She then fleshes out her two scales, including by using views about the tendency (and pushback) against treating race (and to a lesser extent gender) as genetically determined. She reviews data on U.S. adults’ views of the “causes of problems with a person’s health” and explains that her survey results show they are surprisingly nuanced, that is: “Americans accept environmental factors and family or social influences and economic factors and individual choice and medical conditions and God’s will and genetics as explanations for health outcomes.”9 She then examines what causes individuals and institutions to be technological optimists or pessimists, and some general policy approaches in biotechnology regulation toward setting default rules about whether the “new” has to be proven safe first as opposed to requiring that it be shown to be unsafe.The title of chapter 3 perfectly captures its claim: “Disputes over Genomic Science Are Not Partisan.” Using debates over various COVID-19 pandemic policies as a perfect foil, Hochschild shows that there are not large Republican-Democrat divides along the subject areas that are her focus in the book. The point is made most strikingly as to forensic DNA databases, which Hochschild reports stir up very divergent responses; they “are ‘Jim Crow’s database’ or a response to the perennial concern for maintaining social order. They are a lever to pry open prison doors for the falsely convicted or a hammer coming down on poor men of color and their families.”10 Yet she finds that as “[i]ntense as they are, these positions are not aligned with political parties or conventional political ideology. … [E]very public official who has taken a public stance on the subject has endorsed the creation and use of DNA databases in the criminal justice system.”11Beyond her claims about officials’ public statements, she surveys a set of federal and state laws over the last few decades relevant to her project and finds a similar non-effect of Republican versus Democratic lawmakers. The Genetic Information Nondiscrimination Act12 (GINA) was passed with bipartisan support, and states that have extended its protections have not had a discernible partisan pattern. A mix of conservative and liberal states have required health insurers to provide at least some coverage of genetic testing results. There are no discernible Republican versus Democrat divisions in terms of who supports forensic DNA biobanks at the federal level and which states have restrictions reining them in. Using the example of a California proposition from 2004 on the issue, she makes the point that it is not that these things are not political—there is definitely political contestation—it is just that they are not partisan. Turning to partisanship in the courts, she makes the point that when it comes to Fourth Amendment issues with the collection and use of genetic materials, there has either been permissive consensus or disagreement involving mixed conservative and liberal jurists.Chapters 4 and 5 delve deeper into the Enthusiastic versus Skeptical and the Hope versus Rejecting quadrants, respectively.Chapter 4 describes enthusiasm over the human genome project and further mappings of the genome, reduced cost of genotyping, and emerging gene therapies. She also locates pockets of enthusiasm for the use of forensic DNA databases. The discussion is wide-ranging and includes attempts to estimate the likelihood of successful matching if unanalyzed sexual assault kits were run against these databases, attempts to estimate the deterrence effect of these databases, and robust support for exonerating the wrongly convicted using these technologies. The chapter then moves on to enthusiasm for “biogeographical ancestry” and discusses the immense (at least initial) market success of 23andMe and other genetic tests. Hochschild locates three very different sources of enthusiasm in these tests—providing “a person’s ancestry, a racial designation; … adjustments to medical diagnoses and medications”; and the linking of the three13—and highlights some of the key battles over the association of race and genetics in the decades since the human genome project, a topic I will return to below.Turning to skeptics, when it comes to genetic testing and gene editing, the chapter suggests two very different kinds of skeptics: those who “are disillusioned by genomic science’s failure to live up to its early promises”14 and those who are concerned about “genomics’ excessive power.”15 The latter group she divides between those like Professor Michael Sandel who are concerned about these discoveries disfiguring the parent-child relationship and seeking to make the “case against perfection,”16 those with religious beliefs that counsel against (to use that hoary phrase) “playing G-d,” those concerned with slippery slopes toward a breakdown of social solidarity, and those who are concerned that access to genetic alterations will exacerbate existing wealth gaps, among others. As a long-time reader (and sometimes writer)17 in these areas, I felt the book tried to cover too much too quickly, and I very much wanted to understand how the polity breaks down amongst these different flavors of opposition.Turning to skeptics about criminal justice uses of genetics, she again tries to demarcate different strands of concern (many well represented in the legal literature): that forensic DNA usage is becoming increasingly common but is rife with database errors, human errors, and poor training on using the relevant technologies; the use of familial searches in particular and its disproportionate impact on certain racial or ethnic groups for whom encounters with the police may already be more fraught; and general privacy concerns that “we are close to the tipping point where no one can opt out of genetically driven identification.”18 Skeptics of 23andMe and other tests express the concern that the ancestry results being returned are junk, or trivial at best; the concern that there are major risks in “associating conventionally understood racial or ethnic groups with the purported science of genetic inheritance risks”;19 and particular concerns about the use of these test results as a criterion for tribal membership of Native groups.Chapter 5 turns to the “Hope” and “Rejection” quadrants; members of both agree that genetic influence is minimal but have technologically optimistic versus pessimistic views about how the science around that influence will play out. In the medical and scientific research space, Hochschild identifies three primary forms that the Hopeful take: the adoption of “both/and” strategies that acknowledge the value of learning more about genetic contributions to health but always alongside the cultural, behavioral, institutional, and socioeconomic contributors; research on epigenetic processes, which she defines as “the process by which behaviors or the environment (within or outside the body) affect expression or silencing of particular genes, perhaps even across generations”;20 and a view that “genetics does not influence most phenotypes—something else is the causal driver.”21 Here the book does a great job of briefly exploring how hope attitudes manifest differently on the left and right. She then applies the same three variations to the role of genetics in criminal justice, while acknowledging that this is one of the most contested spaces with those who are hopeful, noting that some “Hopefuls perceive any analysis that includes genetic influence in explaining unlawful behavior—even if it is part of a list and especially if it suggests intervention—to fall somewhere between discriminatory and purely evil.”22 In the biogeographical ancestry context, she notes that the “clearest manifestation of Hope in this arena is the goal of turning DNA ancestry testing into a lever for destroying the whole idea of fixed racial categories.”23Turning to the rejection quadrant, Hochschild finds those who deem genomic uses wasteful, risky, or normatively repugnant. In the biomedical research and science space, these rejecters have quite different concerns—harm to animals in experiments that will not yield much, producing self-fulfilling prophecies hampering recovery for those with some mental illnesses, and that “problems caused by social hierarchy are interpreted as evidence of a race, sex, or social class’s genetic weakness or distinctiveness.”24 In the criminal justice sphere, the concerns mix left- and right-leaning objections, such as reducing the role of personal responsibility, stereotyping traits or behaviors, genetic profiling and increased surveillance, and some worrisome aspects of treating crime control as a public health strategy. On biogeographical ancestry, she summarizes the rejecter position as “Rejecters have a simple view of DNA ancestry testing: the tests mislead customers because there is little to no genetic influence on ‘race.’”25 Taking chapters 4 and 5 as a whole, they represent the only place where I found the organization of the book a bit confusing and in some ways undermining the value of the contributions by smushing too much together.26Chapter 6, a truly outstanding piece of work, attempts to characterize where “experts” fall in Hochschild’s four-quadrant framework using data from three separate sources: “a coded database of almost 2,000 genomics-related articles by legal scholars and social scientists in thirteen disciplines; two online, open-ended surveys of several hundred social science experts who responded to questions organized around the basic framework; and almost sixty in-person, open-ended interviews with genomics experts, many in positions of public authority.”27 She offers a rich interrogation of the data while appropriately noting limits. To me the most interesting (albeit perhaps navel-gazing) part of the analysis was her attempt to map social science disciplines by quadrant. Biological anthropology, psychology, criminology, economics, and political science fall clearly in the Enthusiast quadrant (with STS leaning that way, though in a more complex way); no discipline falls in the Hope quadrant; cultural anthropology is the only discipline firmly in the Skeptic quadrant (though she writes that “[e]thics, sociology, and history or philosophy of science are too internally split to categorize safely, though each discipline shows strains of Skepticism”)28; while ethnic and racial studies, cultural studies, and “perhaps law” end up in the Rejection quadrant.29In trying to explain the pattern, she surfaces some interesting hypotheses. “The most methodologically individualist disciplines” embody Enthusiasm, she notes, while “[t]he disciplines most oriented toward collective activity … evince the greatest skepticism about the value of genetics.”30 Despite chapter 3’s assertion of nonpartisanship in electoral politics and public opinion, Hochschild identifies that among academics, the quadrants of her framework assume a political valence: leftist and liberal disciplines house “Rejecters or at least Skeptics, … compared with disciplines whose members are more conservative, Republican, or uninvolved in left-wing causes. In short, although we do not see partisanship in laws, judicial rulings, NIH budgets, or public officials’ positions, we can begin to discern among academics an ideological or normative distinction with regard to the quadrants of the basic framework.”31Her expert interview data set generates some very interesting quotes but perhaps less clarity in terms of take-homes; this seems more to reflect the views of the experts themselves, and one is reminded of Aristotle’s caution that one should “not look for the same degree of exactness in all areas, but the degree that fits the subject-matter in each area and is proper to the investigation.”32 Most of the experts interviewed seem to think that genomic politics was not one that obeyed more typical Republican-Democrat or even left-right dichotomies; that the important disagreements are within ideological camps; that this is not an area for purists;33 and that genomics produced strange bedfellows politically. The experts thought the greatest value from genomic science would come in medical advances for certain disorders and an era of personalization of medicine by genetics; that it might, ironically, forefront the social determinants of health and behavioral factors; and that it has benefits for animal and plant biology, and some suggested it might increase tolerance and reduce bias. The experts were most concerned about premature translation of genomic science into the clinic, exploitation of enthusiasm by Big Pharma and the creation of a genetic underclass, and genetic discrimination.Chapter 7, one of the most revelatory, turns from experts to the general public’s attitude, primarily by using survey data from surveys Hochschild fielded in 2011 and 2017. The first finding, which she acknowledges is unsurprising, is that in both surveys 70% of respondents “had heard or read ‘not very much’ or ‘nothing’ about ‘issues having to do with genes or genetics,’” with fewer than 10% having heard “a great deal” or “quite a lot.”34 Looking at her examples of interest, in 2011 only 6% reported that they or a family member had taken a genetic test, and only 2% an ancestry test, and there was hardly any knowledge of medical or scientific biobanks, but “in both years, about half had at least heard of forensic databases (which the survey had defined).”35 The surveys also had three knowledge-testing questions about genetics itself, and while results improve somewhat between the two years, they vary a lot, and she characterizes the overall result as “broad but shallow knowledge.”36 The surveys also sought to measure U.S. respondents’ views about genetic inheritance of eight phenotypes as compared to their having environmental or lifestyle causes. She finds:Almost none perceive the flu, and few perceive aggression, to be primarily genetic. Conversely, substantial majorities (appropriately) agree that genetics is the main cause of sickle cell anemia, cystic fibrosis, and eye color. The sensitive issues of sexual orientation, intelligence, and heart disease comprise a third cluster, with about a fifth of respondents in each case focusing on genetics. Note that attributions to aggression, intelligence, and—oddly—heart disease are especially cautious, with three-fifths or more of respondents choosing the indeterminate “mixture.” These patterns change very little across the six years, except for a slight but uniform decrease in genetic attribution.37Attitudes are somewhat mediated by knowledge. Those who got all three of the knowledge questions incorrect make few distinctions as to the heritability of the eight traits. The most knowledgeable “were more likely than other respondents to choose a mix of genetic and nongenetic causes for heart disease, intelligence, and aggression, but less likely to choose a mixture of causes for cystic fibrosis, sickle cell disease, flu, and eye color.”38 Interestingly, the most and least knowledgeable ended up choosing the middle ground on the heritability of being gay and lesbian.She then considers attitudes of her respondents to her example uses by asking them if they involve more good than harm (which she characterizes as support/optimism), more harm than good (which she characterizes as oppose/pessimism), or equal amounts of each. In general, she finds U.S. respondents support more than oppose, but the degree differs by technology: there was ten times as much support as opposition for forensic DNA databases but only twice as much for germline gene editing—and everything else was in between. Overall, about half of respondents chose the “equal amounts” answers, though it is mediated by knowledge, in that “the more they know about genetics, the less likely they are to choose the middle ground between technology optimism and pessimism,” and the more they know, the “more likely they are to be technology optimists. … [F]or each question, there is a 25 to 45 percentage point difference in risk acceptance between those giving no correct answers on the genetics knowledge scale and those giving three correct answers.”39 When she delves into this data, she helpfully puts it this way: “Although knowledge is not necessary in order to be in the Enthusiasm quadrant (half of those who would have scored a 0 on the genetics knowledge test are Enthusiasts), it is close to sufficient (nine-tenths of those who would have aced the test are in that quadrant).”40 This was, of course, not designed as a causal test, but it does suggest that for those seeking to promote acceptance, more education of the public is key.Hochschild then maps respondents onto her four quadrants. She finds that “genetic influence and optimism are linked: the more traits or diseases that a respondent sees as genetically caused, the more likely he or she is to be optimistic about genomics’ societal benefits.”41 Americans are overall very optimistic about these technologies: In 2011, 64% of respondents were Enthusiasts, 25% Hopeful, 6% Skeptics, and 5% Rejecters. In 2017, 56% were Enthusiasts, 30% Hopeful, 6% Skeptics, and 8% Rejecters. She is cautious about how to interpret the change from 2011 to 2017, saying only that rejecters “may be growing” but notes that their “small numbers belie their analytic and political importance.”42 While she does find some correlation between attitudes and demographic characteristics, it is fairly “weak tea,” and instead her major takeaway is “that demographic characteristics do not sharply differentiate among the quadrants,” and in particular whatever “is nudging people into one or another stance toward genomics, it is not their partisan identity” (i.e., party affiliation).43 She contrasts her results with Dan Kahan’s on climate change,44 saying that “the higher their scientific intelligence score, the further apart liberal Democrats and conservative Republicans move in beliefs about climate change’s causes”45 and finding that Democrats and Republicans track one another in all four quadrants as their genetic knowledge increases.Her analysis of the role of race is worth quoting at greater length since it is something I come back to below:[R]ace matters about as little as partisan identification does—another surprising feature of genomic politics. It is not quite irrelevant: in 2017 (though not in 2011), Blacks are a bit less likely than Whites and Hispanics to be Enthusiasts and a bit more likely to be Skeptics at every level of genetics knowledge. There may be a trend here—knowledgeable Blacks are slightly less Enthusiastic in 2017 than their counterparts were six years earlier.46The chapter then does a deep dive into free-text comments by participants in the survey. I cannot do this part of the book justice, so instead I will just pick out a few interesting results. First, she finds that the optimism/pessimism-about-technology scale “divide[s] respondents much more sharply than whether they perceive genetic influence to be a primary, secondary, or nonexistent explanation for human traits and behaviors.”47 When it comes to medical biobanks, Enthusiasts and Hopefuls both root their support for medical biobanks in the desire to help others. Skeptics emphasize privacy and mistrust of government or other organizations in their reasoning. Interestingly, “Rejecters evince no strong concern about privacy or mistrust in 2011, and are only moderately concerned in 2017; their distinguishing characteristic is a global, terse, indeterminate refusal to engage.”48 Regarding forensic DNA databases, Enthusiasts focus on “justice” generally, exonerating themselves in the future, exonerating the innocent, and showing some general optimism about genetics’ value untethered to criminal justice. Hopefuls are very similar. Skeptics have responses similar to those about medical biobanks and “express mistrust and concerns about privacy, corruption, and governmental overreach.”49 She characterizes Rejecters, as in the medical biobank area, as using “vague, terse, or summary statements about their unwillingness to contribute to a forensic DNA database” and notes that half of their answers were “some version of ‘no,’ ‘not my job,’ ‘not interested,’ ‘no time,’ or ‘I’ve told you I have better things to do.’”50 Partisan positions are again largely absent, in that in “12,000 opportunities to present views of biobanking in Americans’ own words, the terms ‘Democrat,’ ‘Democratic,’ ‘Republican,’ and ‘conservative’ are completely absent.”51 Finally, to connect it to what I discuss below, it is worth quoting more fully the role of race in the comments:Nor do GKAP [survey] respondents echo advocates’ and experts’ concerns about the invidious impact of genomics on particular racial groups or sexes. Across the 12,000 opportunities for comment, “Black” appears six times, “African” ten times, and any variant on “Latin,” “Asian,” or “Mexican” once each. A few refer to their race to justify refusal to contribute, but most of these (few) references point in the opposite direction—to possible benefits of DNA research for people of different races, or as a counter to racial discrimination in the criminal justice arena. Variants of “race” or “racism” appear about thirty times in the 12,000 responses, mainly for the same two optimistic reasons. A few would condition their contribution on an assurance that a forensic DNA database would not be used in any racially biased way, a few praise the use of DNA for exoneration and hint at a racial inflection, and a few condemn racism outright. One seems to suggest that DNA testing will show that blacks commit more crimes. Several people use “White,” but always to describe themselves as possibly useful controls for data analyses in the medical arena. About twenty people seek to help “the human race.”52Hochschild wisely notes that this “mismatch between the public’s lack of focus on group identity (at least as expressed in a survey) and the apprehensions or commitments of experts and advocates does not, of course, mean that the apprehensions are wrong,” but it does drive home her “point that genomics, although deeply contentious, is not (yet?) politicized in the United States along predictable lines, unlike so many scientific arenas.”53Chapter 8, entitled “Who Should Govern?,” examines the opinion of experts and members of the public on governance in Hochschild’s example areas. She does a good job of summarizing the takeaway at the beginning of the chapter:To preview my findings about Americans’ views on who should govern: the most accurate answer at this point is “no one”—or possibly “everyone” or doctors. That is, social science experts, interviewees in the policy arena, and the general public collectively offer nothing remotely resembling a consensus in response to [the] query about who should ultimately decide. Political partisanship and race are associated with some differences in views, but residence in the four quadrants continues to show much stronger variation. The most deeply rooted societal uses of genomics, in particular forensic DNA databases, enjoy the strongest support, while the newest possibilities—somatic and especially prenatal gene editing—engender widely varying reactions. But I see no emerging central driving principle; governance may turn out to be as difficult as it is important.54The snippets of expert interviews will often ring familiar to anyone who has sat through workshops (academic or governmental) on genomics with social science and legal experts. Indeed, the way in which Hochschild organizes their comments by subtopic with sample pro and con statements by experts will remind legal academics of Llewellyn’s famous dueling canons55 or perhaps Duncan Kennedy’s notion of “argument bites.”56 Some of the experts, to me quite sensibly, suggest what I would characterize as distributed governance, wherein governance powers are spread among several different actors of very different institutional type,57 but there is nothing that approaches consensus on what that would look like.Returning to a comparison the book frequently makes to nuclear power when it emerged, Hochschild notes that genomics does not face the additional challenge that “the institutions for creating and managing the technology emerging from the science had to be invented at the same time that the power was discovered and deployed.”58 Fair enough, but the flip side is that there are now, with genomics, many more well-funded and well-organized stakeholders and institutions vying for a piece of the governance pie, and this has dimmed the hopes of fundamental governmental action; in most of the domains Hochschild covers (gene editing being a notable exception), this has defaulted us into more laissez-faire governance by markets.Her interviews with non–social science experts (this group is pretty heterogenous, including among other things Hill staffers with some genetics training) show that they too are “frequently at a loss about who should govern,” but she does find one point of consensus: in “contrast to the social science experts, everyone whom I interviewed—except physicians themselves—argues that doctors should not be responsible for managing genomics.”59 Politicians also seem to be viewed particularly unfavorably: “Interviewees are usually sympathetic or at least polite regarding physicians’ genetic incompetence. Not so for elected officials—not even the political actors or staff members whom I interviewed have anything good to say about government leaders’ management of genomics.”60 These two sections are fun reads for an academic in the area, but I do wonder whether the *shrug* result would have generated some clearer trend lines had Hochshild done more to break out the questio