chapter  6
15 Pages

Disability, Democracy, and the New Genetics

In this essay I will try to suggest ways of thinking about biotechnology, bioethics, and disability that are compatible with democratic values. I will start with the uncontroversial proposition that we have entered an era in which our capacity for manipulating genetic material will determine what it means to be human-and in which our deliberations about what it means to be human will guide our capacity

for manipulating genetic material. In saying this, I am presuming not only that political deliberations can determine the scope and direction of scientific researchthat much seems obvious-but also that democratic values should prevail with regard both to the procedures and the substance of such deliberations. Affirming at the outset one’s commitment to deliberative democracy in suchmatters does not


foreordain their outcome: it remains to be determined, for instance, whether it is consonant with democracy to prohibit or permit prospective parents to engage in genetic selection for Huntington’s disease or for myopia, or to prohibit or permit potential genetic therapies for Alzheimer’s or multiple sclerosis. Deliberative democrats can plausibly come to different conclusions on these questions, based on opposing yet reasonable assessments of how to understand and adjudicate competing claimswith regard to individual liberties (positive and negative), ideas of distributive justice, legitimate scientific objectives, moral injunctions to prevent suffering, and beliefs about human dignity and nascent human life. However, deliberative democratsmust nevertheless agree to insist at the outset that democracy is the primary value to be upheld in the deliberationsthat although participants in the debate may rely on and express strongly held religious beliefs, religious beliefs in and of themselves cannot andmust not determine the course or the scope of the debate. This might sound uncontroversial, but in

practice and in theory, it has important consequences that many of my fellow citizens (and many of my fellow humans) will not bewilling to accept. In the course of this essay, for example, I will rehearse my position on prenatal screening for fetuses with disabilities, a position I set forth in chapter 2ofLife AsWeKnow It, and Iwant to acknowledge immediately that there are many people of sound mind and good will who disagree with that position. Some of them, as I have learned over the past few years, dispute not only my calculations of the relative social goods and harms of prenatal testing, but also, andmore stringently, my primary assumption that public access to andpublic uses of prenatal testing should be thought of in terms consonant with democratic values. As one of my interlocutors onceput it, in the course of a discussion

at Syracuse University’s Center for Human Policy, it may be that democracy is not the highest value in such affairs. To people who start from the premise that there are divine laws the meanings of which are not subject to human deliberation, andwhich therefore must be imposedonhumanity by the representatives of the deity, nothing I say in this essay will have sufficient persuasive force. And this is but one example of a pervasive philosophical problem that some have called, for better or worse, ‘‘postmodern’’: when the claims of two systems of beliefdemocracy and theocracy, perhaps-are opposed, there may not be any way to reconcile them under the heading of a third, more universal term. Wemay instead be facedwith a fundamental incommensurability between discourses of justification, such that we may not even have the language in which to agree to disagree. Understanding this problem, then, and admitting that I will have no common ground with some participants in debates over genomics even as I appeal to the practice of deliberative democracy, I will begin mydiscussionof biotechnology anddisability by talking about a Hollywoodmovie. But not just any Hollywood movie: the film in question, Gattaca, might well be the new locus classicus for discussions of genetic screening and enhancement, and one of its plots offers a vivid illustration of what Michael Sandel would argue some years later in The Case Against Perfection: namely, that a designer baby might spend its life laboring under the burdens imposed by his or her design, and that our sense of human freedom (for such children, and for their designing parents) would thereby be paradoxically diminished rather than enhanced by our increasingmastery over the genome. Gattaca depicts a dystopian world, set in

the ‘‘not-too-distant future,’’ of widespread in vitro fertilization and pre-implantation screening, in which school placements, job interviews, and indeed life prospects

consist of blood tests and urine samples. Children conceived the ‘‘old-fashioned’’ way-for example, by means of sex in the back seat of a car, as is the case for our protagonist and narrator, Vincent Freemanare called ‘‘in-valids,’’ ‘‘de-generates,’’ ‘‘faith births,’’ or ‘‘God children’’; they are increasingly rare, and they make up the lower echelons of society, assigned to various forms of menial labor. Vincent, played by Ethan Hawke, is excluded from school as a child because the school cannot afford the insurance costs he entails, and consigned to a life of janitorial work even though he dreams of space flight, hoping against hope to work someday at the giant aerospace corporation, Gattaca. Throughout his childhood, he had been fascinated with space and space travel; we see him, as a scrawny, bespectacled teen, reading a book titled Careers in Space-and we witness his father, venting his frustration and anger by telling his son, ‘‘For God’s sake, Vincent, don’t you understand. The only way you’ll see the inside of a space ship is if you’re cleaning it.’’ The moment Vincent is born, his initial genetic analysis, drawn from a blood sample and read instantaneously by an attending nurse, reveals the following: he will have a 60 percent probability of a neurological condition, a 42 percent probability of manic depression, an 89 percent probability of attention deficit disorder, a 99 percent probability of heart disease, and a life expectancy of 30.2 years. No, this is not a plausible representation of what genes can tell us. But my argument does not depend on this scene; what matters for my purposes is that Vincent’s devastated parents, Marie andAntonio, decide to have a second child in vitro; ‘‘like most other parents of their day, they were determined that their next child would be brought into the world in what has become the natural way.’’ The genetic technician/counselor informs Marie and Antonio that four eggs have

been fertilized-two boys, two girls-and that theyhavebeen fully screened for ‘‘critical predispositions to any of the major inheritable diseases.’’ Marie and Antonio indicate that they would like to have another boy, a brother for Vincent to play with. The geneticist nods. ‘‘You have specified,’’ he goes on:

The geneticist smiles indulgently when he refers to the parents’ preference for ‘‘fair skin,’’ because, as it happens, he himself is black (he is played by Blair Underwood). By this we are led to understand that in this brave new world, genetic discrimination is common but racial discrimination is a thing of the past. The point is reinforced a few minutes later, when Vincent recounts his experience as a young man seeking employment: ‘‘Of course,’’ he tells us, ‘‘it’s illegal to discriminategenoism, it’s called-but no one takes the law seriously. If you refuse to disclose, they can always take a sample from a door handle, or a handshake, even the saliva on your application form. If in doubt, a legal drug test can just as easily become

an illegal peek at your future in the company.’’ And we see a human-resources manager wordlessly challenging Vincent to provide a urine sample. The manager, like the genetic counselor, is black. I find this aspect of the movie’s premise

fascinating for two reasons-not only because the film so clearly (if counterintuitively and counterfactually) disarticulates racism fromgenoism, but also because it establishes Gattaca as a film about civil rights and employment discrimination. Disability in science fiction is not often discussed in such mundane terms, but perhaps it should be. Readers of Philip K. Dick will remember that one of the things that got lost in translation between the 1969 novel Do Androids Dream of Electric Sheep? and the 1982 film Blade Runner is the category of human ‘‘specials,’’ people neurologically damaged by the nuclear fallout of World War Terminus and derisively referred to as ‘‘chickenheads’’ or, in severe cases, ‘‘antheads.’’1 The Voight-Kampff empathy test, central to both the novel and the film, is a device bounty hunters (‘‘blade runners’’) employ to distinguish humans from androids trying to pass as human; it was originally devised, as Dick’s novel explains, to identify ‘‘specials’’ so that they could be sterilized and consigned to the lower echelons of society. Blade Runner drops Dick’s treatment of the relation between disability and employment by taking the novel’s despised and lonely ‘‘chickenhead,’’ J. R. Isidore, a driver for an artificial animal repair shop, and rewriting him as J. F. Sebastian, a lonely high-ranking engineer for the Tyrell Corporation (though the filmdoes give Sebastian another disability, ‘‘Methusaleh syndrome,’’ a prematureaging disorder that effectively links him to the Nexus-6 androids who have lifespans of only four years). Gattaca, by contrast, builds its plot around the relation between employment and disability; its central drama focuses entirely on whether Vincent

will be discovered and thrown out of work and into jail. That drama of detection and evasion, in turn, transforms the relation between race and disability into one of mutual implication: once it become inescapably clear that he will be unable to pursue a career in space exploration because of his genetic makeup, Vincent decides to become a ‘‘borrowed ladder,’’ using the bodily fluids and effluvia of JeromeMorrow in order to obtain the clearance necessary for employment at Gattaca. Jerome (played by Jude Law) is a former world-class athlete who was struck by a car (we learn later that he tried to kill himself after failing to win an Olympic gold medal); paraplegic and visually marked by the most common sign for physical disability, his wheelchair, he literally sells his genetic identity to Vincent as he descends into bitterness and alcoholism, finally committing suicide in the film’s final sequence. In other words, Gattaca is not only a science-fictional exploration of employment discrimination; it is also a member of one of the oldest genres in African American fiction, the passing narrative. Scholars in disability studies have tended

to see Jerome’s character as a regrettable and gratuitous reinforcement of stereotypes of disability. Anne Finger’s 1998 review has largely set the terms of the debate: arguing that the film is ultimately ‘‘scared of the radicalness of its critique,’’ Finger suggests that Jerome’s suicide is meant to reassure the contemporary able-bodied audience who largely identify with Vincent and hope that they, too, would have the determination to fight genetic determinism and succeed. ‘‘In its futuristic world,’’ Finger notes:

Likewise, Kathleen Ellis argues that ‘‘movies such as Gattaca contribute to the discrimination’’ against people with disabilities insofar as Jerome is presented as a weak, contemptible character, wallowing in vodka and self-pity (Ellis). What these critiques overlook, however, is that Jerome is not bitter and suicidal because he is disabled; he tried to commit suicide before he was disabled, solely because he had to settle for a silver medal, and he is bitter because his attempt failed: ‘‘Jerome Morrow,’’ he tells Vincent, ‘‘was never meant to be one step down on the podium.’’ Jerome’s story is not that of Million Dollar Baby, in which an athlete decides that a physically disabled life is not worth living; it is an illustration of Sandel’s argument against genetic enhancement-or, as Vincent’s voiceover puts it, a warning about ‘‘the burden of perfection.’’ That said, it is notable that there are no

accommodations for Jerome in this society: it is otherwise impressively high-tech, featuring 12-fingered pianists and space travel to the moons of Saturn, but it does not appear to have a single elevator, ramp, or kneeling bus. Perhaps Jerome has reason to be bitter. He does not own a power chair (apparently such thingsno longerexist), and his apartment has no elevator-just a spiral staircase, an echo of the double helix, by which Jeromehas to draghimself upstairs at a critical moment in the narrative. Notably, there are no wheelchair users at Gattaca Corporation, even though physical disability is clearly no impediment to becoming

a first-rate computer programmer or aeronautical engineer. One is left to infer that disability discrimination in this society is severe indeed, though the film leaves this point implicit, just as it does not call attention to its representation of race. Of course, it’s possible to say that the film is simply bizarrely optimistic that a society so obsessed with genetics will be a society without racism; it certainly appears to be a society composed entirely of able-bodied heterosexuals, so it is not clearwhyone form of pervasive bigotry has been overcome while other forms seem to rule the world. But let me turn from the implicit aspects of the film to the film’s explicit presentation of what counts as uncontroversial genetic screening in this society: the elimination of all major inheritable diseases, as well as ‘‘potentially prejudicial conditions’’ such as premature baldness, myopia, alcoholism and addictive susceptibility, propensity for violence, andobesity.WhenVictor’smother demurs, saying ‘‘we didn’t want-I mean, diseases, yes,’’ surely the phrase she’s thinking of and not uttering is something like ‘‘a designer baby.’’ Which is, of course, precisely what she gets-still you, just the best of you. And the reason she goes along with it is that her child doesn’t need any additional burdens-especially barriers to meaningful education and employment. The Gattaca scenario presents a chal-

lenge especially to liberals who (like me) have thus far combined political support for reproductive rights, a defense of technologies of prenatal screening, a critique of cost-benefit analyses of humanworth, a stringent skepticism about theworkings of the United States’ deeply inegalitarian insurance and health care system, and, last but not least, a defense of an aggressive social welfare state that provides needbased benefits to children and adults with disabilities. Granted, abortion is not an issue in Gattaca, precisely because IVF and genetic screening seem to have taken it off

the table (though one does not know if there are abortion providers who cater to prospective parents who conceive accidentally in the back seats of cars). But the film does raise the question of what happens to the embryos Marie and Antonio do not select, andmore importantly, it raises the question ofwhatconditionsweshouldscreen for, and what we should do if and when we detect them.The largerquestionat stake,of course, is the question of who should inhabit the world, and onwhat terms. My own position onwhat is nowcalled the ethics of ‘‘selective abortion’’ with regard to fetuses with disabilities is substantially identical to that of the 1999Hastings Center Report on theDisability Rights Critique of Prenatal Genetic Testing (Parens and Asch 2000), which defended reproductive rights and prospective parents’ access to prenatal screening while critiquing the idea that the detection of genetic anomaly is a self-evident justification for terminating a pregnancy.2 Though I donot consider disability sufficient grounds for abortion, I believe that the fetus does not have a moral status equivalent to that of a child unless and until it is viable outside the womb, and I support the rightofprospective parents to terminate pregnancies even for reasons that I would regard as trivial or wrongheaded. Rayna Rapp’s Testing Women, Testing the

Fetus is replete with accounts of such parents, including the one who told Rapp that ‘‘having a ’tard, that’s a bummer for life’’ (91) or the one who insisted that if the baby ‘‘can’t grow up to have a shot at becoming the president, we don’t want him’’ (92)—in regard to a fetus with Klinefelter’s syndrome, on the basis of whose diagnosis the parents terminated the pregnancy. I remain unpersuaded that there are transcendent moral virtues to be advanced by compelling such parents to bear children with disabilities, even though the disabilities in question are relatively benign; indeed, I shudder to think how

such parents will treat their disabled children if they are compelled to bear them against their will. Nor do I see why it is virtuous to compel parents to bear children with farmore severe conditions that involve profound physical and emotional suffering for all concerned, such as Lesch-Nyhan syndrome or Tay-Sachs disease; I submit that in a democratic society it is better to allow prospective parents to make such decisions for themselves. For that reason I have insisted (and continue to insist) that it is more consistent with the principles of democracy for people like me to persuade prospective parents and genetics counselors not to think of amniocentesis as part of a search-and-destroy mission, and to persuade them that many people with disabilities, even those disabilities detectable in utero (like Down syndrome), are capable of living lives that not only bring joy and wonder to those around them but are fulfilling and fascinating to the people living them as well. But I will not argue that some formsofchildbirth shouldbemademandatory, nor will I demand that prospective parents be barred from obtaining genetic information about the fetus if they so desire such information. As Rapp writes, ‘‘at the intersection of

the disability rights movement and the feminist movement for reproductive rights lies a thorny problem: How is it possible to contest the eugenic and stigmatizing definition of disabilities which seems to underlie prenatal diagnosis, while still upholding the rights of individual women to determine what kind of medical care, and what sorts of pregnancy decisions, are in their own best interests?’’ (51) Rapp eventually crafts two moral imperativesas well as the meta-imperative to see these two as complementary rather than contradictory: ‘‘The first is the need to champion the reproductive rights of women to carry or refuse to carry to term a pregnancy that would result in a baby with a serious

disability. The second is the need to support adequate, nonstigmatizing, integrative services for all the children, including disabled children, that women bear’’ (7-8). The difficulty of balancing these needs is exemplified by the excruciating tensions in Ruth Hubbard’s essay, ‘‘Abortion and Disability: Who Should and Should Not Inhabit the World?’’, which insists-four times, for good measure (three times emphatically in the course of its seven final paragraphs)—that ‘‘a woman must have the right to abort a fetus, whatever her reasons’’ while arguing that some of those reasons are (a) continuous with the logic of Nazi eugenics and (b) influenced by forces that appear to undermine Hubbard’s faith that a woman’s reasons can be her own. ‘‘Women are expected to implement the society’s eugenic prejudices by ‘choosing’ to have the appropriate tests and ‘electing’ not to initiate or to terminate pregnancies if it looks as though the outcome will offend,’’ Hubbard writes, pointedly questioning the choices she does not endorse by employing scare quotes to suggest that they are not ‘‘choices’’ at all. ‘‘And to a considerable extent not initiating or terminating these pregnancies may indeed be what women want to do. But one reasonwewant to is that society promises much grief to parents of children it deems unfit to inhabit the world’’ (118). What’s striking about Hubbard’s argument is not only that it discounts the decisions of prospective parents whose justifications for abortion she (and I) might find trivial or wrongheaded, suggesting that such decisions are imposed by ‘‘society’’ and on a continuum with Nazism, but also, and more remarkably, that itmanages to criticize women who choose not to become pregnant in the first place-whodonot ‘‘initiate’’ pregnancies-in an essay ostensibly devoted (as its title indicates) to abortion and disability. But surely a democratic society can find some way of honoring and respecting the decisions of women who do not want to

pass a genetic disability on to their children. And one does not (by which, of course, I mean I do not) want to see disability rights advocates elide the difference between abortion and contraception, so that they wind up taking the position Hubbard suggests here-that the decision not to initiate a pregnancy, for reasons related to disability, is as censurable as the decision to terminate one. For the moment, our society seems to

have achieved a shaky but substantial consensus that it is morally acceptable to screen fetuses for profoundly debilitating conditions suchasTay-Sachsdisease,which involves severe and ceaseless suffering over a nasty, brutish, and short life span, but morally unacceptable to terminate a pregnancy solely with regard to gender.3 Everything else-Down syndrome, Huntington’s disease, multiple sclerosis, leukemia-falls at various points in the capacious area between, and thus far the people of the United States have apparently decided to leave decisions concerning such conditions up to the people who will be most affected by them. But the Gattaca scenario compels us to ask which ‘‘potentially prejudicial conditions’’ we would allow prospective parents to eliminate if the technology were available. That is to say, even in the not-toodistant-future, we might feel a profound moral repugnance at the idea of terminating a pregnancy simply on the basis of the finding that the fetus has a genetic propensity for obesity, myopia, or premature baldness. But if we could select against these features at fertilization, would we do so, and what moral grounds would we offer for refusing to do so and preventing others, by law, from doing so? In recent years I have taught Gattaca

alongside Sandel’s The Case Against Perfection and Jonathan Glover’s Choosing Children: Genes, Disability, and Design, noting that Glover, in the course of an argument for genetic enhancement in ‘‘a regulated

market, on a European model,’’ where ‘‘which choices, if any, should be excluded would be part of democratic debate’’ (77), sees no problem with eliminating many ‘‘potentially prejudicial conditions’’: ‘‘Eliminating a genetic disposition to shyness or laziness might help someone flourish, as might making them more cheerful or boosting their ability to sing or to learn languages’’ (75-76). In Glover’s ideal regulated-market democracy, apparently, a social consensus has been achieved that it is acceptable to tinker with character traits like shyness or cheerfulness, just as it goes without saying in the world of Gattaca that we should screen for premature baldnessdespite the fact that the genetic counselor himself is bald (and, inmy humble opinion, rather attractively so). My students have overwhelmingly found Glover’s position repugnant, arguing that such traits as laziness and shyness do not rise to the level of diseases one would want to delete from the random reconfigurations of our genetic possibilities. (Some argue, however, along Sandel’s lines, that it is acceptable to intervene pharmaceutically to bring someone to a baseline of health, as when one is prescribedmedication for severe and debilitating shyness, anxiety, or depression.) Interestingly, however, many of my students report that they would welcome a genetic test that would screen for ‘‘propensity to violence,’’ considering this a trait well worth deleting whenever possible. Upon noting that in class after class, my female students were nearly unanimous on this point, I began to reflect on the question of gendered violence (which, I realized, had been implicit in the discussions all along), and to suggest to students that this is one of the questions posed to us by Margaret Atwood’s Oryx and Crake: though Crake’s attempt to redesign the human species from scratch is monstrous-he is, after all, VictorFrankensteinassophisticatedgenetic engineer-there is surely something to be

said for a world in which there is ‘‘no more prostitution, no sexual abuse of children, no haggling over the price, no pimps, no sex slaves. No more rape’’ (165). My own answer to the question of how

wemight determine how andwhy to screen for genetic traits, tentative though it be, runs as follows. In a world that possesses the kind of genetic knowledge we envision in Gattaca, bioethicists, philosophers, Presidential commissions, and humanists like me would have made the argument that while it is acceptable to screen for major inheritable diseases, screening out the ‘‘potentially prejudicial conditions’’ enumerated above-even the propensity for violence-would be highly controversial and far from routine. Our society would have had, and would still be engaged in, a wide-ranging debate about what kinds of disabilities do involve profound suffering or significantly diminished life chances for those who have them, and (by contrast) what varieties of human embodiment may be undesirable or inconvenient but, on the whole, do not constitute conditions so prejudicial as to jeopardize significantly the life chances of those who have them. Such a debate would acknowledge, moreover, that manydisabilities arenot detectable genetically, and that no amount and no degree of prenatal screening or in vitro engineering will produce aworld free of people with cerebral palsy, autism, or pneumonia, not to mention people who are hit by cars.4 Some of the debate’s participants would have learned not to think of disability as synonymous with disease, and would continually try to persuade other participants that not all disabilities have disease etiologies andnot all disabilitiesneed tobeconsidered in terms of cure or elimination (though in manycases, ameliorationmightbeperfectly acceptable).5 And finally, such a debate would focus not only onpotentially prejudicial conditions but on actually existing prejudices, extending the protection of the

social welfare state to stigmatized populations while working also to de-stigmatize previously stigmatized identities (as had been done, evidently, with regard to people of African descent in the world of Gattaca). The debate would produce a boundary of the unacceptable, just as we now have agreement on the desirability of forbidding human cloning to produce children and a looser agreement on the permissibility but undesirability of selective abortion for gender. And in democratic fashion, the debate would seek to honor liberal freedoms and ideas of individual autonomy in decisionmaking while insisting nonetheless, as both Mill and Rawls would tell us, that democracy does not have to honor all the preferences anddesires of every person participant therein. It pains me deeply to admit it, but in

such a society, the vast majority of people with Down syndrome would be those among the ‘‘faith births,’’ those conceived without the benefits of IVF and genetic screening. There would still be a good number Deaf people in this society, despite screening and despite the widespread availability of cochlear implants, partly because our social debate would have concluded that Deafness is far less damaging to one’s life prospects and one’s ability to participate fully in the social and political life of the polity than is Down syndrome and partly because some of our fellow humans (Deaf and hearing) would have determined that Deaf culture is valuable, distinctive, andworth preserving in its own right, and that it has no linguistic or cultural counterpart amongpeoplewith Down syndrome. I say this not because I desire to see a world absent of people with Down syndrome; I cannot even imagine what it would be like to desire such a thing. But I can imagine that if we had the power to screen formajor disabilities, inheritable diseases, and potentially prejudicial conditions, many (but by no means all) of

my fellow humans would see the elimination of Down syndrome as a social good; fewer would see the eradication of Deafness as a good; and fewer still would see the eradication of myopia or baldness in those terms. Such would be, on my best guess, the results of a democratic deliberation about disability and genomics.6