Americans have celebrated the fact that the Biden administration is embracing science and returning the country to evidence-based policymaking. We agree that science should guide policy—except in cases where it wouldn’t assist people to live their lives but would, instead, exclude them.
The CRISPR-Cas9 gene-editing technology, for which biochemists Jennifer Doudna and Emmanuelle Charpentier won the Nobel Prize in Chemistry, has the potential to do just that. So do other forms of scientific technologies. We should therefore always be aware of the ethical choices these technologies can pose.
In the case of CRISPR, those choices are complex. CRISPR has many functions; one of these is that it can be used to treat disease. Yet the far-reaching, more fraught promise of this technology—one about which scientists seem at once excited and cautious—lies in its ability to eliminate from the gene pool what medical science identifies as faulty or abnormal genes that cause difference in individual people. Certainly, goes the logic of CRISPR’s promise, the goal of ridding future generations of terrible diseases that cause suffering and death and deplete resources, seems an unquestionable enterprise.
But Doudna herself has recognized that CRISPR carries with it “great risk.” In a New York Times interview on October 22, 2020, she warned of the unknown consequences of embryo editing, cautioning researchers to wait to use CRISPR for these ends.
As disability studies scholars and women with genetic differences who are experts in thinking about the consequences this technology will have for actual human beings, we have grave worries that the use of these “genetic scissors” will, in the future, cut people like us out of existence without others even noticing. Scientists who use CRISPR could see editing genes such as ours out of the gene pool as entirely uncontroversial.
This attitude, in fact, would be consistent with wider societal views. The idea that ridding society of genetic differences that count as disease or defect is an undeniable “good” continues to be pervasive in our society. Americans generally see no problem with editing genes linked to broad swaths of people like us; after all, supporters of this view may argue, editing out a gene-linked condition is different from editing out a person, and curing disease is an indisputably good thing.
But our genetic conditions are not simply entities that can be clipped away from us as if they were some kind of a misspelled word or an awkward sentence in a document. We are whole beings, with our genetic conditions forming a fundamental part of who we are. Still, many Americans—including medical providers and even some people with genetic differences—consider lives such as ours as not worth living as they are.
Further, the common belief that ridding disease and anomaly from society is an incontrovertible good can lead very quickly from the actual possibilities of science to fantasies of “improving” humanity where we would all become some aspirational version of personhood that is somehow better, stronger, smarter, and healthier. But CRISPR’s tantalizing offer to achieve the supposedly “best” kind of people at the genetic level is an uneasy alert to those who are often judged to be biologically inferior—one we know all too well. People like us whose being is inseparable from our genetic condition would be the first to go.
We both have genetic conditions that many people consider serious enough to eliminate from the human gene pool: one of us lives with cystic fibrosis (CF), and the other a form of syndactyly. Both of these conditions have shaped our bodies and our lives. Sandy’s affected lungs require several hours of treatments each day, and Rosemarie’s affected hands limit her manual dexterity. We are among theone billion people in the world (15 percent of the population) and61 million people in the United States (26 percent of all adults) who are considered disabled. We are among the 10 percent of all adults who have a genetic condition.
Because we were born with our conditions, we have benefited from learning early on how to live with the characteristics of our particular genetic distinctiveness. Our supportive families saw to it that we accessed good health care and received educations suitable to our talents and interests. Improved medical treatments, social progress, and political equality movements raised our quality of life in ways that people like us in generations prior to ours could not have imagined.
When Sandy was born in 1967, people with CF had an average life expectancy of 15, but during 1970–1990, life expectancy doubled due to new medical therapies. Today’s average life expectancy is 44, but with novel medicines called cystic fibrosis transmembrane conductance regulator (CFTR) modulators, people withCF are expected to live even longer with fewer hospitalizations. These transformations in life expectancy attest to the changing nature of prognosis, one for which CRISPR’s editingcannot account.
When Rosemarie was born, in the late 1940s, people with physical disabilities like hers were often institutionalized and led limited lives far from the support of their families. At that time, only one in five children with disabilities were educated in public schools with nondisabled children. Physically disabled children were most often sent to segregated schools where they received inferior education. With the Education for All Act of 1975 (now the Individuals with Disabilities Education Act (IDEA), however, the federal government guaranteed public education and services for all children with disabilities, thus changing their life trajectories.
We learned to thrive with the bodies we have and possess identities and lives that include our genetic diagnostic categories but also go beyond them. Yet stubborn beliefs about “good” genes and “bad” genes nonetheless persist in discriminatory attitudes that affect us both. When Rosemarie was pregnant with her first child, the obstetrician assumed that her major concern was that the baby would have hands and arms like its mother, even though Rosemarie’s biggest concern was finding a good childcare situation that would complement her job responsibilities.
When Sandy considered having a biological child, friends and medical providers questioned her decision to consider pregnancy because that meant passing on one copy of her cystic fibrosis gene to a future child. This imagined child would not have had the disease since her husband is not a carrier for CF (CF is an autosomal recessive disease). But some of those in Sandy’s circle still believed pregnancy inadvisable because, to them, producing a child who would carry the CF gene was equally undesirable. Sandy called out their assumption: that her condition was inherently inferior—a point they took as self-evident despite the fact that an estimated24 percent of people worldwide are carriers for genetic conditions.
These stories also reveal an enduring ideology about the inextricable, cultural link among disability, reproduction, and suffering. They illustrate the subtle, yet insidious, idea that some genes are inherently bad and contaminate the human gene pool; as such, people who carry them should not propagate and pass those genes on to their progeny so as to make those children either carriers or affected. These ideas also expose an even deeper, ableist assumption: that people with supposedly “bad genes” fundamentally suffer and hold a less valuable place in society than others.
This isn’t to say that people with genetic conditions don’t suffer, but we don’t necessarily suffer all the time and we don’t necessarily suffer any more than other people without such conditions. Yet the cultural impulse to assume that people with genetic variations are in a constant state of suffering, and that it blights our lives, is so pervasive that it is even internalized by some with genetic conditions themselves.
Such genetic determinism is a new form of eugenic thinking grounded in what the communications studies scholar James L. Cherney calls “common sense” ableism, a belief system that allows people to simultaneously deny any commitment to distasteful eugenic principles while also holding them up. Common sense ableism permits, even encourages, such injurious attitudes.
Utilizing genome manipulation tools and performing genetic selection is tantamount to engaging in what Rosemarie calls “velvet eugenics.” Enforced by laissez-faire commercialism, rather than by the state, velvet eugenics seems like common sense, yet it hides its violence and inequality behind claims of patient autonomy and under a veil of voluntary consent. Ultimately, market-driven velvet eugenics embodies a similar goal of purging unacceptable human variations that campaigns to eliminate the supposedly unfit and inferior have held in the past. Both enact a mandate to exclude people with disabilities from coming into the world.
People like us shouldn’t be edited out of existence in some version of a utopian future. This vision of a future without people like us limits our ability to live in the present. Evaluating the quality of life of another person is a complex, highly subjective, and context-dependent task that is morally questionable in a society based on the concept that all people are of equal value regardless of their individual differences. The limitations of human imagination make it questionable, if not unethical, for a person to grasp another person’s (or group of people’s) quality of life fully.
Expanding diversity in all its forms, including disability, strengthens the human community ethically and biologically because it opens the public and private sphere to a variety of perspectives, life experiences, ideas, and solutions to live together with mutual flourishing. More important, our shared founding belief in the equal value of all members of a society should remind us that people’s worth should not be determined by social judgments about their contribution. All members of a community contribute to its welfare by existing in their individual distinctiveness.
Genome editing is a powerful, scientific technology that can reshape medical treatments and people’s lives, but it can also harmfully reduce human diversity and increase social inequality by editing out the kinds of people that medical science, and the society it has shaped, categorize as diseased or genetically contaminated–people like us who are understood as having bad genes. But we should be reminded that bad genes don’t necessarily lead to bad lives, just as good genes don’t necessarily lead to good lives. If CRISPR is put to use to eliminate rather than to treat genetic difference, we as a society would essentially instrumentalize this moralistic and reductionist assumption.