Fifteen thousand babies are born every hour, every day, around the world. About 3 percent, or 450 individuals, are twins. In November 2018, a very special set of twins were born in China. Named Nana and Lulu, the sisters were the first humans to be genetically altered using CRISPR, the gene-editing system developed from bacteria.
A codiscoverer and pioneer in the application of CRISPR technology to genome editing, Berkeley scientist Jennifer Doudna, told Vision in 2016, “The big-picture view is that we have the tools to change our DNA and change the things that we are passing on to future generations. And now we can make those decisions. That is a profound thought.”
Continuing, Doudna noted general agreement among the scientific community that there should be “broad societal consensus before we use this technology in any clinical application in the human germ line. But how do you define ‘broad societal consensus’? That remains to be seen; it was not the end of the conversation but the beginning.”
But conversation and consensus have been overwhelmed by the reality of Nana and Lulu.
Chinese biophysicist He Jiankui jumped over consensus and philosophy to practice. Apparently masking his plans from the oversight process at the Southern University of Science and Technology in Shenzhen, He first used in vitro fertilization techniques to create several embryos. He then made the profound leap forward and, as he described the procedure, pioneered “gene surgery.” His goal was to create a mutation known for its role in blocking one form of HIV infection.
In theory, because the edits were made in the cells of the early embryo, all the girls’ cells carry the alteration. This means that their eggs carry the edits; they will pass this change down to their children. This is called germ-line editing.
When the births were announced, the scientific outcry was strong and condemning. But was the scientific community really surprised? What is at stake when we begin to modify our genes?
Adding his voice to the conversation is Richard Hayes, cofounder of the Center for Genetics and Society (CGS) in Berkeley, California, and its executive director from 2001 to 2012. “We’re in a classic danger-opportunity situation,” he says. “If we can’t invoke and mobilize a sense of being part of a common humanity, it will be difficult to constrain dangerous genetic technologies; on the other hand, the stark threat posed by these technologies might be just what’s needed for the importance of our common humanity to be widely understood and affirmed.”
Hayes spoke with Vision contributor Dan Cloer on the topic of human germ-line modification and its eugenic dangers.
DC How did you go from studying energy and resource policy to human genetics policy?
RH In the early 1990s I was a doctoral student at UC Berkeley, with a focus on environmental economics and economic justice. I also did coursework in fields somewhat removed from my core focus but which I believed would have bearing on the prospects for a sustainable and just human future. One of these was human genetics.
DCThis was at the outset of the Human Genome Project.
RHYes, it was just getting off the ground. It seemed reasonable to imagine that human genetic technologies would be important in the early 21st century. But it wasn’t until I began doing the coursework, going to conferences and talking with scientists, that I became aware of just how rapidly these technologies were being developed, how truly dangerous they had the potential to be, how committed many leading scientists were to the development of a new techno-eugenics, and how far under the radar of both the general public and policymakers any of this was.
“The new techno-eugenics is far more dangerous than the old eugenics because we can now not only manipulate individual genes and sets of genes, we can assemble and insert genes that have never before been assembled in the history of life on earth.”
I began talking with people to see who else was concerned about the way these new genetic technologies were being developed. My colleague Marcy Darnovsky and I organized a series of small meetings and conferences that eventually led to formation of the Center for Genetics and Society (CGS) in 2001. CGS’s core mission is to call attention to the dangers of the new human genetic technologies and to push for policies to ensure their use for benign, beneficent applications only.
DCI get the sense that you see the application of genetic technology to humans as a kind of underground movement of science doing something that it should not be doing.
RHIt wasn’t exactly underground; it was more like hiding in plain sight. Leading scientists wanted to move toward the creation of designer babies, but they didn’t say so because they knew that the great majority of Americans were strongly opposed to that. So they moved strategically, with a barrage of so-called bioethics reports, safety reviews, study commissions and ethical advisory boards, all of which gave the appearance of careful, sober deliberation. But it was in large part a smoke screen. At no point did any of the mainstream commission reports say, “We should ban the creation of designer babies. Permanently.” They could have done so, but they didn’t. That’s the tip-off. Meanwhile they’d hold professional conferences and write popular books attesting to the many life-saving cures that human gene editing would allow.
Now, some of the claims they made are legitimate; there are potentially beneficial uses of human genetic technology. Genetic testing can identify genes that might cause disease and thereby allow early treatment. Other genetic tests can indicate whether a patient might be more or less responsive to particular pharmaceuticals. And certain types of gene editing may be able to ameliorate or even cure a wide range of adverse conditions.
Of course, the development of such applications of gene technology calls for careful monitoring and regulation. And there are huge concerns about the potential cost and thus the equity implications of many gene therapies. The estimated cost of one proposed gene therapy is over $4 million per patient.
DCModifying immune cells to fight cancer via CRISPR, for instance, is not a deeply moral problem, even though it may raise questions of distributional justice. Is germ-line editing (of eggs, sperm and zygotes) the red line not to be crossed?
RHThat’s correct, and it’s important to know why. Modifying genes in a patient’s body other than the genes in their eggs or sperm is called somatic gene editing. The case you mention of using CRISPR to modify immune cells is a good example. Somatic gene modifications are not passed on to your children. Germ-line gene editing, however, modifies the genes in eggs and sperm. Those changes are passed on not only to any children conceived with those modified eggs and sperm, but to their children, and so on, forever. As you say, germ-line editing is the red line we should never cross. It opens the door to a truly dystopian, horrific human future.
DCBy “horrific,” are you suggesting more than just another level of haves and have-nots?
RHI certainly am. If we allow heritable gene editing, the first applications will likely be modest. They’ll modify one defective gene that causes a disease. But if it’s okay to tweak one gene, why not two? And if two, why not twenty? Or two hundred? And if it’s okay to use it to cure a disease, why not use it to enhance a desirable skill, cognitive ability or physical attribute?
“There are over 20,000 human genes. How many can be modified before we cease to be human? Where do we draw the line? And who would draw those lines? Once we start in earnest there’s little prospect of turning back.”
Once we start modifying our genes, we’re on a road that leads to the formation of genetic castes, and beyond that to human subspecies. Further, some scientists propose building entirely artificial chromosomes, potentially packing in thousands of gene modifications, and inserting them into eggs and sperm. Anyone born with those extra chromosomes would be able to reproduce only with others possessing the same extra chromosome. That’s called reproductive isolation, and it’s the key factor that differentiates one species from another.
Heritable gene editing would affect the way parents feel about their children. Rather than being free gifts of love, children would become artifacts engineered to desired performance standards.
We all know that computer software comes in new versions every several years. Suppose baby Susan is engineered with 20 top-of-the-line gene versions available at the time of her assemblage. What happens when brother Bob is born three years later with new, more sophisticated versions of those same genes? Think about it: how do people treat outdated computer software?
Some years ago my wife and I were having dinner with a group of educated, professional couples, and they were discussing the prospect of children created through reproductive human cloning. “Should the clone be told how it was created, and if so, at what age?” “Could you make a clone of the clone?” No one seemed the least aware of the way in which the language they adopted displayed a reflexive objectification and dehumanization of a human life.
We’re at a critical juncture. Over the next decade or so, the human community is going to have to answer this question: Will science and technology be used to further or to subvert the human purpose? Will we choose to remain human or attempt to become some sort of artifactual posthuman?
DCThat begs the question of what is the human purpose. Some will say that our purpose is to use science to its maximum ends, and if that produces speciation as you suggest—well, we drove Neanderthals to extinction too.
RHSome do say that, and a first response appeals to our deep and long-standing commitment to democratic governance. What do the great majorities of people, domestically and worldwide, believe should be done? In survey after survey, people have no trouble saying that the road leading us to a future of posthuman designer babies is not a road we want to travel on.
Given the state of the world today, with economic inequality growing by leaps and bounds and with rampant polarization and conflict showing no sign of abating, the last thing we want to do is to put a technology like CRISPR into widespread use to modify our children’s genes. It would be a—I can’t even think of a metaphor. It would in fact be a crime against humanity.
DCThe movie GATTACA is often rolled out as depicting this kind of future genetic dystopia. Do you think media like this plays a part in helping people explore the implications of our technology?
RHIt does, but we have to be cautious. GATTACA actually underplays the real dangers of the new genetic technologies. It focuses on the use of human-embryo screening for nondisease traits, which is worrisome enough but doesn’t touch on the even more dangerous uses of CRISPR technology for germ-line manipulation. I’d be careful about looking to commercial media, and especially Hollywood media, for useful information on such complex and consequential topics. However, as you say, such media can have widespread and lasting impact. One takeaway is that those working in the film industry must be held to high standards of ethical responsibility when addressing controversial topics.
“Ideally people should educate themselves on topics such as human gene editing in a setting that brings together others with whom they share a community life: their local congregation, a parents association, community educational institutions and the like.”
DCIn your 2008 statement to a US House of Representatives subcommittee concerning genetics and other human modification technologies, you wrote that “despite many statements to the contrary, the genie is not out of the bottle. In any event some of the genies are good genies. And the worst genies are still in the bottle. I sincerely believe we have the time and the capability to get ahead of the curve and do the right thing.” Are we still ahead of the curve?
RHYes, but the situation is continually in flux. Over 35 countries worldwide, including most of those with the most developed bioscience infrastructures, have legally banned human germ-line gene editing, and the United Nations voted unanimously to call for a global ban on human reproductive cloning. The birth last year in China of the first gene-edited babies generated international outrage and new calls for global bans on human gene editing.
On the other hand, the techno-eugenics advocates remain as committed as ever, and designer-baby promoters in the three countries with the most active pro-eugenics scientific cadres—the United Kingdom, the United States and China—are working to head off calls for permanent bans and even for strong moratoria. Rogue scientists in additional countries are reportedly at work with their own gene-editing efforts. Each new birth will reinforce the belief that a future of designer babies is inevitable, which is precisely what the designer-baby proponents want us to believe. Moves to encourage this sense of fatalism need to be countered, and the most effective way to do so is to show that policies prohibiting the creation of designer babies can be successfully advocated and established. There needs to be an active, coordinated, well-funded global campaign to stop the new techno-eugenics and prohibit heritable human gene editing. At this moment there is no campaign of this sort underway.
DCSince the human embryo is the platform for germ-line editing, are stem-cell research and the use of early embryos another layer of concern? Benjamin Hurlbut, a bioethicist at Arizona State University, asks simply: What is the embryo? He writes that some scientists want “to repurpose the spare IVF embryo from a potential child to an experimental object.” You have said, “It’s the materialist-reductionist-determinist worldview run amok. It’s what happens when people become disconnected from themselves, others, and nature.” How does all of this fit together?
RHWe have to acknowledge that people differ in good faith about where exactly the lines should be drawn concerning the treatment of human embryos. But a world in which there are no lines at all on the treatment of human embryos, and in which heritable human gene editing and reproductive human cloning are allowed, would be a hellish dystopia. Every aspect of human personhood would soon have dissolved into a meaningless mush and eventually into nothingness. The continued treatment of human persons as objects leads to human personhood becoming an object—that is, to extinction.
It’s important to note that human gene editing is part of a suite of emerging and converging technologies of enormous power and consequence for the human future; these include nanotechnology, synthetic biology, artificial intelligence and robotics. Proponents of the hypertechnological future anticipate and celebrate a world in which all life has been integrated into or fully replaced by machinery, and human minds have been uploaded onto computer chips installed on solar-powered spacecraft bound for Alpha Centauri. This perverse vision has quickly become the default vision of the human future held by influential sectors of the scientific and technology community and their colleagues in academia, industry, media and the arts. Its proponents proclaim it to be evidence of human aspirational genius, but it’s better understood as evidence of pathology. The belief that humans are just machines and that machines will someday be just like humans is a false and pernicious one. The fact that so many otherwise intelligent people appear to hold that belief is alarming and should be cause for great concern.
“It will be difficult to forestall germ-line modification, and the technological dehumanization that it would generate, without a strong affirmation of the spiritual dimensions of human life.”
DCI would say that the so-called view-from-nowhere allows scientists of that mind-set to believe they make their own rules. If there is no greater meaning, if it’s just cells and physics—nothing sacred here, keep moving, nothing to see—then there is nothing to be grounded on except yourself.
RHI agree. It’s as if there’s something missing at the core of their souls; or rather, it’s there but covered over by such a hard, calloused shell that they no longer know it’s there. One common reaction to this state of existential alienation is to seek self-affirmation through power and control over the natural world and over other people. I don’t believe we fully recognize how pervasive this alienation and its accompanying lust for power and control actually are.
DCAgain, we come to the problem of purpose. Where do we find the purpose that will help us establish the right boundaries? Is this where we need to listen to the Einstein qualifier, “Science without religion is lame, religion without science is blind”?
RHWe need both science and religion, and it’s wrong to believe that they are inherently at odds. I think that all of us, religious or secular, can agree that the problem of widespread profound alienation must be understood and addressed. It doesn’t require a religious commitment to sense the fullness, diversity and richness of what it means to be human, and to agree that technologies that endanger our common humanity should be forgone.
Here’s my bottom line: I think we’re living right smack in the middle of a big, fat Miracle—and that we’re here, in significant part, to celebrate it. Yet we’ve become alienated from this reality; and in our many misguided attempts to ease the pain of this alienation we can do, and are doing, great damage. Some of the worst damage involves the destruction of what it means to be human. And we are increasingly doing this through the use of powerful technologies such as those that allow us to manipulate the genes of our children.
DCA Russian geneticist named Denis Rebrikov said in June that he would use CRISPR to modify the germ lines of more children and that germ-line editing will definitely be used for enhancement purposes in the future. He told Science, “[Enhancement] will be the next step. But in 20 to 30 years. Now, I’m opposed to it. In 2040, I’ll support it. I’m not against the idea itself. And these people who are opposed want to have all these things in their children but only by ‘divine providence,’ not by science. They are liars or stupid.”
RHI wish I could say that I’m shocked to hear someone talk like that, but I’m not. I’ve heard this and worse from scientists many times over. I think we need to feel compassion for those whose understanding of human life appears to be so impoverished.