“When science moves faster than moral understanding,” Harvard philosopher Michael Sandel wrote in 2004, “men and women struggle to articulate their own unease.” The genomic revolution has induced “a kind of moral vertigo.”49 That unease has been triggered numerous times before and after the genetic engineering revolution—the structure of the double helix, the solution of the genetic code, the recombinant DNA revolution, prenatal genetic diagnosis, embryonic stem cells, and the cloning of Dolly. “Test tube baby” was an epithet in many circles but five million IVF babies are an effective riposte to critics of assisted reproductive technology.
With CRISPR, history is repeating itself, only this time we have the lives of three genetically manipulated human beings weighing on our collective conscience. Lulu, Nana, and the third CRISPR baby did not ask to be genetically modified. “We should all hope and pray that these two little girls are okay,” Francis Collins said. “They did nothing to bring this trouble down upon them. They certainly didn’t give their consent.”50 True enough, but then again, no embryo or person has ever given informed consent over the circumstances of their conception or the mash-up of genetic material that accompanied fertilization.
Long before CRISPR babies, some argued that engineering genetic enhancements for cognitive or musical talent or athletic ability would steer such children toward a particular destiny, depriving them of free will. But as Sandel noted, this implies that children are naturally free to choose their fate. “None of us chooses his genetic inheritance,” Sandel wrote. The alternative to a genetically enhanced child “is not one whose future is unbound by particular talents but one at the mercy of the genetic lottery.”51 Gene editing poses a threat to human dignity. The drive for perfection—mastery of a sport, instrument, or cognitive skill—obscures humanity’s achievements. Sandel says the sin of enhancement would be the evasion of training and hard work. He quotes William May, who said, “to appreciate kids as gifts is to accept them as they come.”
In the world of sports, fair play is a forgotten virtue as some professional and aspiring athletes take steroids, growth hormone, testosterone, or erythropoietin to steal an advantage on the competition. Governing bodies can detect traces of chemical doping, but genome editing opens up a Pandora’s box. “There will be others seeking to fill [JK’s’] research shoes and the possibility of hidden funding to attempt to create the perfect athlete,” warned Lord Colin Moynihan, speaking in the House of Lords. “Gene editing clearly has huge benefits, such as relieving the burden of heritable diseases. However, it has no place in the sports arms race if we are to protect the integrity of competitive sport.”52
A bigger concern surrounding genome editing is that it would exacerbate social divisions and inequality. How will access to germline editing be based on need rather than means? The first approved gene therapies are setting record-breaking prices, such as Novartis’s staggering $2 million price for Zolgensma. As companies hike the price of generic drugs, some pharma executives, spouting fiduciary responsibility, seem more interested in putting their shareholders ahead of their patients. Genome editing companies developing somatic therapies aren’t going to give these precious medicines away as they seek to recoup the vast sums invested in R&D and manufacturing. By contrast, a company developing a germline therapy might be able to offer a more affordable procedure, as the CRISPR machinery would only be administered to a single cell (or gamete).
Equal access to 21st-century medicines is a major concern, says Church, who like Lander, thinks the alternative to genetic therapy is actually genetic counseling. With the cost of genome sequencing dropping toward a paltry $100, “everybody could now get their genome sequenced and avoid a huge fraction of these expensive orphan drugs and gene therapies by genetic counseling.”53 The last thing Church wants is a have-and-have-not society. “When people talk about the ethics of CRISPR, 90 percent of it should be, and probably is, about equal distribution of expensive technology.”
In some circles there is a revulsion at the prospect of man-made genetic alterations muddying the gene pool and decreasing human diversity. Would society function better if everyone received an assist on their IQ score? In most countries, high IQ correlates with wealth, health, and overall well-being. But there are ways of addressing that imbalance without resorting to genome surgery in the womb. Why does intelligence, wealth, and job status determine life outcomes so much in the first place? “That is something which should be addressed, rather than reified,” says British philosopher Gulzaar Barn.54
Physical attractiveness is rarely a disability in life. A CRISPR clinic offering facial prediction would further the notion that a woman’s value is derived from her appearance, says Barn, accentuating division and privilege in society. In a world with increasing wealth disparity, this procedure would trickle down from the wealthy. Early efforts to predict facial features from DNA by artist Heather Dewey-Hagborg and Craig Venter55 met criticism,56 but they too will improve. In a fair society, everyone should have access (if they wish) to these sorts of genetic endowments, although that’s a pipe dream. Barn argues we should be addressing societies’ institutions and structures so that life outcomes aren’t so dictated by these factors. “We need to consider whether it is right that a small number of unrepresentative, rich funders and scientists are able to implement technologies that have the ability to radically alter society in unprecedented ways.”
Those opposed to germline editing argue that we would lose diversity, reinforcing the stigma and discrimination faced by those with disabilities or other genetic conditions. “There is value in human fragility that would be lost if disabilities were made to disappear,” says the Lancet’s Horton.57 The eugenic concern about “weeding out” disabilities applies more urgently to PGT, where hundreds of thousands of embryos are screened each year, while sub-optimal embryos are consigned to a state of suspended animation. Western countries routinely screen for Down syndrome (trisomy 21) and other trisomies, the incidence of which correlates with increasing maternal age. In Iceland and Denmark, the number of babies born with Down syndrome annually has been reduced to single digits. Columnist George Will, who’s eldest son has Down syndrome, accused Iceland of implementing a “final solution” to the disorder.58 Meanwhile, some states in the U.S. have passed laws making it illegal to prevent abortion of fetuses diagnosed with trisomy 21.
Genome editing won’t change society that much in the near future, but the prospect of genetic enhancement would only accentuate societal differences instead of trying to stem such inequalities. As Barn says, we’re all prone to illness and in need of help from others at some point in our lives, which warrants greater investment in public services and support for the less fortunate. “Retaining a more empathetic approach, predicated on the belief that every human life is valuable, is crucial for ensuring a well-functioning society that works for the benefit of all.” Philosopher Mike Parker says the best possible life is not necessarily one in which all goes well. Human flourishing involves aspects of both strength and weakness.
Genome editing stokes fears among many disabled people of “society’s fear of the deviant.” This sense of ableism is “denying us our personhood and our right to exist because we don’t fit society’s ideals,” says Rebecca Cokley, a disability advocate who served in the Obama Administration. Cokley has a form of dwarfism called achondroplasia. She sees her condition as a “rich and diverse culture,” a culture she wants to pass onto her children. “We should have that right,” she wrote in an op-ed in 2017 in the Washington Post. It was titled “Please Don’t Edit Me Out.”59