GENOMIC POLITICS AND EQUALITY

نویسندگان

چکیده

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

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ژورنال

عنوان ژورنال: American journal of law and equality

سال: 2022

ISSN: ['2694-5711']

DOI: https://doi.org/10.1162/ajle_a_00027