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OPINION
FEBRUARY 16, 2021 7 MIN READ
The Dark Side of CRISPR
Its potential ability to “fix” people at the genetic level is a threat to those who are judged
by society to be biologically inferior
BY SANDY SUFIAN & ROSEMARIE GARLAND-THOMSON
Credit: Getty Images
Policy
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 di”erence in individual people. Certainly, goes the logic of
CRISPR’s promise, the goal of ridding future generations of terrible diseases that cause
su”ering 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 di”erences 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 di”erences 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 di”erent 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 di”erences—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 o”er 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 a”ected lungs require several hours of treatments each day, and Rosemarie’s
a”ected hands limit her manual dexterity. We are among the one billion people in the
world (15 percent of the population) and 61 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 with CF 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 editing
cannot 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
a”ect 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 estimated 24 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 su”ering. 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 a”ected. These ideas also expose an even
deeper, ableist assumption: that people with supposedly “bad genes” fundamentally
su”er and hold a less valuable place in society than others.
This isn’t to say that people with genetic conditions don’t su”er, but we don’t
necessarily su”er all the time and we don’t necessarily su”er 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 su”ering, 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 di”erences. 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 di”erence, we as a society
would essentially instrumentalize this moralistic and reductionist assumption.
RIGHTS & PERMISSIONS
ABOUT SANDY SUFIAN
Sandy Sufian is an associate professor of health humanities and history in the Department of Medical
Education at UIC School of Medicine and associate professor of Disability Studies in the UIC Department of
Disability and Human Development.
More by Sandy Sufian
ABOUT ROSEMARIE GARLAND-THOMSON
Rosemarie Garland-Thomson is a professor of English and co-director of the Disability Studies Initiative at
Emory University.
More by Rosemarie Garland-Thomson
