For all the promises of gene editing, its study cannot be divorced from eugenics and a larger racist history that has inspired many of its endeavors.
By Jude Casimir
Henrietta Lacks visited John Hopkins Hospital in 1951, complaining of vaginal bleeding. A mother of five children, Lacks was diagnosed by gynecologist Howard Jones with cervical cancer. After undergoing radium treatments, sample cells were extracted from her tumor. While the cells extracted from other patients suffering the same illness swiftly withered and died, those extracted from Lacks lived on. Not only did they live, they doubled at an incredible rate—in 20 to 24 hours.
Now known as “HeLa” cells, this tissue was used to study a variety of bodily issues, becoming the basis for a large number of medical advancements throughout the 20th century. Lacks died on October 4, 1951, at the age of 31, just over nine months after she visited John Hopkins Hospital and having never consented to the use of her cervical cells.
While a case brought before the Supreme Court of California—Moore v. Regents of the University of California (1990)—ultimately ruled that discarded cells are not the property of the person from whose body they originate, the case of Henrietta Lacks still haunts the question of gene therapy. While informed years after Henrietta’s death about the harvesting of her cells, it wasn’t until 2013 that the Lacks family was informed of the HeLa gene sequence, and the extent to which her consent was violated by the John Hopkins medical establishment.
The family ultimately received compensation. 62 years after the fact.
When I first learned about gene editing in high-school freshman biology, it was a cursory note in the curriculum. It was a little more than a cool, exciting little piece of knowledge the teacher threw at us in hopes that it would lift our spirits after the long year of preparing for the big standardized tests our learning was based around. A thing we should know about, but something futuristic and far off.
In that mini unit near the end of that year, we mainly discussed the positives—how it could revolutionize cancer research and its preventative prospects in children. We talked about how we could use this science to help save endangered species and even bring back extinct ones. We didn’t go too in-depth about some of the dangers, but my teacher did mention some, like how children with edited genomes might fare long-term. She mentioned there were some big ethical and moral concerns, but didn’t go into what those might be. This was, after all, something to be excited about, something to send the students off with. Besides, our 15-year-old brains were more concerned with the implication that we might be able to bring back wooly mammoths and saber-tooth tigers.
I mostly filed the concept away after that.
But from the moment I first saw the announcement of the Nobel Prize in Chemistry being awarded to work in gene editing, I was uneasy.
Awarded to Emmanuelle Charpentier and Jennifer A. Doudna, the 2020 Nobel Chemistry Prize recognized their paper entitled Genetic Scissors: A Tool for Rewriting the Code of Life. The pair were recognized for their study of CRISPR/Cas9 genetic scissors, which have the potential to change the genetic code of plants, animals, and microorganisms. Because of the accuracy of their research, their findings are suggested to have the ability to empower new cancer therapies and bring medical science ever closer to curing inherited disease, maybe once and for all.
Now, I have no intention of questioning the work of Charpentier and Doudna. In fact, their impact, as explained on the Nobel website, is likely monumental. That said, the positive promise of gene editing—as embodied by this development—cannot be divorced from the spectre of eugenics, especially when it comes to our understanding of the history of what is good and right, not simply in the body, but also in the body politic.
Arguably, the entirety of modern medicine is an exercise in eugenics. It’s a history fraught with violence—both physical and psychological—done to Black people with the ultimate goal of learning what’s best for whites, a microcosm of the terrors of white supremacy.
Over the past decade or so, we’ve seen a surge in eco-fascism and bullshit discussion of population growth (shoutout to Vox co-founder Matt Yglesias for his One Billion Americans, which claims that the only way to beat back China is to increase our population, in a classic “Yellow Terror But For Liberals” framework). As fascism and eugenics go hand-in-hand, Black and disabled people have seen increased rhetoric around our value and efficacy, so this makes me hyper-skeptical of even the most benign discussions of altering genomes to combat disease. After all, the idea of disease is racialized, socialized, and weaponized against the most vulnerable.
There are many ideas that exist under the umbrella of “health” that are bullshit abstractions: weight, disability, cognitive and emotional wellness. In each of these cases (and many more not mentioned), the idea of a healthy body or lifestyle is weaponized, especially against the most marginalized people. This reality makes “health” a dangerously elastic concept, one that invites those with their accumulated prejudices to find ways to fix, under the guise of healing and protection.
Perhaps this is no clearer than in the case of race, wherein health disparities exist as manifestations of racism, discrimination, and economic inequality, but are simultaneously viewed as genetic abnormalities that can be, at best, amended and, at worst, erased. Since things such as heart disease or diabetes are more likely to affect Black people and other minority groups, some people will profess that these disparities are due to a specific set of genetics among these groups. We’ve seen this most recently and perhaps most potently with the impact of COVID-19, where it had to be debunked several times over that Black people are not predisposed to getting the deadly illness, although we are the ones who have to deal with the highest rate of infection and death.
Rather than striving to address the social, racial, and economic underpinnings of the statistics that lead to such conclusions, too many turn to the eugenicist idea of some sort of elemental predilection—a failure of the person rather than a failure of the systems that enact their violent will upon the person.
The connection between gene editing and eugenics—and the resultant concern—is not a new one. In a 2015 article from National Geographic, writer Karen Weintraub underscores the difference between gene editing as an avenue to fight disease and one to create so-called designer babies. Quoting Marcy Darnovsky, she writes: “Unlike curing disease, genetic enhancement would be morally reprehensible.” Weintraub goes on to explain Darnovsky’s concern that the potential for genetic enhancement would “[pressure parents] to ‘improve’ their kids,” creating a culture in which richer families have greater access to whatever ubermensch bullshit they wish to impart upon their upcoming spawn.
While Weintraub (and by extension Darnovsky) focus their concerns primarily on class, it’s all too easy to extend their conclusions to race. Even as we discuss the problematic trend of white families adopting non-white children—whether out of some strange colonizer sense of benevolence, a desire to have a pudgy exotic status symbol, or just to collect an Instagram token which can be discarded as easily as the gum that lost its flavor and now sticks to your shoe—the prospect of building a child from the ground up is disturbing, to say the least. A Sims game designed by Josef Mengele. What could go wrong?
That eugenics seems to be having a new day in the sun only exacerbates these concerns: liberal movie vloggers waxing poetic on the eradication of poor Southerners (fittingly obsessed with superhero media, and seemingly unaware of the racial demographics of states like Georgia and Tennessee), while Aryan conservatives describe leftist politics as a “disease” to be eradicated. Politics and bodily integrity have always been inherently interlinked, because what makes its mark upon the state makes its mark upon the flesh. The veins that carry our blood also carry the things that decide whether our blood should be poisoned, spilled, or, “cured.”
This all leads us to one very simple question: to what end will the genetic scissors trumpeted by Charpentier and Doudna be put to use? Even if these two scientists have the best of intentions—which they likely do—in their achievement, we must view gene editing in a historical context that stretches far beyond miraculous potential, into a much darker realm—one that is all too willing to pervert even the brightest miracles.
Eugenics haunts the United States. Eugenics haunts the world. If we view medical science as a great towering library of overlapping genius, eugenics is the shadow that stalks the stacks of that library when all the lights are turned off. For all the promises of gene editing, its study cannot be separated from the violent history that has inspired many of its endeavors—like the ordeal of Henrietta Lacks and her cells—and the gleeful brutality of white supremacy, which would be more than happy to leverage its achievements.
From the very beginning, disease and our ability to escape from it has been defined by the values put upon us: by our societies, our aims, and our ends. Similarly, we have continued to shape the concept of health, using it as a guide not just for somatic well-being, but social value. In the face of this, we must continually ask: What is the sickness, in what form this blessing will arrive, and what service will be demanded for its receipt?
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