Future of Genetics Debate Recap

Our live debate on the future of genetics — the final one of our first season — quickly turned into an intense discussion on the ethics and challenges of human genetic enhancement. Three experts gathered in Doha to answer the question, “Should we create superhumans?” Each speaker arrived with a highly pointed argument but left the stage with at least some consensus.

Taking cautionary measures due to the novel coronavirus, the debate was held without its usual live student audience, but the show’s interactive nature was preserved by correspondent Nelufar Hedayat, who videoconferenced with students and shared tweets and Instagram videos from viewers in Nigeria, the UK, Sweden, Ghana and several other countries.

The debate primarily focused on germline editing, which results in heritable changes to DNA — that is, if embryonic DNA was edited to produce blue eyes, the genes for blue eyes would be present in their offspring and their offspring’s offspring. Compared to somatic gene editing — which does not produce heritable changes — germline editing earned the world’s attention and criticism in recent years. Using a technology called CRISPR, Chinese scientist He Jiankui claimed in 2018 to have edited the genes of twin girls to be HIV-resistant. He and two colleagues were convicted for violating China’s medical regulations, and the scientific community’s conversation about the ethics of gene editing was thrust into international discourse.

Moderator Ghida Fakhry was joined by three experts, Professor Julian Savulescu, ethicist, moral philosopher and the current Uehiro Chair in Practical Ethics at the University of Oxford; technology and health care futurist Jamie Metzl, who is also a member of the Human Genome Project-write consortium; and Katie Hasson, the program director on Genetic Justice at the Center for Genetics and Society. Ghida framed the debate by asking: Where do we draw the line when it comes to human gene editing? Should we aim to edit out certain debilitating diseases or conditions? Will gene editing deepen global inequality if it’s initially only available to those who can afford it?

Julian came out strongly in favor of gene editing, calling it a moral imperative for society. What matters to each of us, he said, is our overall well-being. We measure that in terms of things like happiness, whether we can set our own goals and achieve them and whether we have deep and substantial interpersonal relationships. Genes don’t just affect health, he argued, they also affect our capacity for well-being — and nature doesn’t allocate genes equally. Rational evolution — the use of science to shape our genes and improve our values — is already widely accepted, as are biological interventions. We iodize salt because it improves IQ. We remove lead from paint because it causes intellectual disabilities. We use prescription drugs to reduce impulsive violence. There’s no difference, Julian argued, between environmental and biological interventions — and parents should be able to access these technologies to improve their children’s lives, providing the technologies don’t harm their children or other people. Anticipating an argument for genetic diversity, Julian contended that not all diversity is good: Psychopaths contribute to genetic diversity, but not to a better society. Whereas we once needed genetic diversity to overcome threats like a new strain of coronavirus, we now have science. Julian also envisioned a future that sounds like science fiction, but may only be decades away: the ability to create an entirely new species, with higher IQs, radically longer lifespans, or with genes transferred from non-human animals to provide hawk-like vision or bat-like hearing. Science can tell us how to achieve these things, but ethics can tell us whether we should — “and the promotion of well-being is the central ethical principle,” he concluded.

Jamie Metzl’s opening statement began with a cheerful “Hello, superhumans! If you’re wearing glasses or are immunized, you are already a superhuman.” Like Julian, Jamie sees gene editing as a foregone conclusion: We’re already using so many therapies and technologies to improve the human race, and gene editing is no different. What if we could engineer people to be resistant to a new coronavirus, or to eradicate painful genetic conditions? Improve health care so that it’s not based on averages of the general population, but customized to your own biology? Or allow the human race to live on a planet that will eventually become uninhabitable? On the other hand, Jamie acknowledged the real and profound risks of gene editing, which could divide us in dangerous and terrible ways. To avoid deepening inequalities and flattening essential genetic diversity, he argued, we need to let our values and ethics guide these powerful technologies.

Katie Hasson asked the audience: “Let’s really imagine this world, where each baby’s DNA is being manipulated from the moment of their conception in the lab, where parents’ immediate desires are written into their future children’s genome, and the generations to come.” Would the traits perceived as the “best” be available only to the affluent and privileged? Would gene editing dig deeper trenches between the haves and have-nots? Would parents feel pressured to select traits based on narrowly defined cultural and social norms? These are the questions we need to consider, Katie said, and now is the time to do so. “The practice is not safe, it’s not needed, and it has the potential to vastly increase the already outrageous inequality that we’re experiencing.” Countering previous arguments that germline editing could prevent serious diseases, Katie pointed out that we already have safe embryonic genetic screening techniques. Germline editing carries the additional risk that we would write our current cultural biases into generations to come — in practical terms, that means disabilities could be even further stigmatized. When we imagine the future we want for the next generation, heritable genome editing is not what will get us there.

Ghida then explained the Majlis process, which involves critical conversation leading to a group effort to build bridges and find common ground. She challenged Julian to consider whether Katie was taking the morally responsible position by urging extreme caution. Julian reiterated why gene editing is a moral imperative with respect to disabilities: “To choose not to act is also to consign those people to a future that may be very grim.” The world grows more technologically complex every day, and an intellectual ability that “used to be good enough” to participate in society might not be good enough to participate in an advanced future society. Gene editing, he said, could actually reduce inequality by uplifting humanity and creating a smarter, healthier population. “It’s somewhat arrogant to sit here when we’re all amongst the most genetically privileged, with our IQs over 120 … and say, ‘No, other people shouldn’t have access to this.’ … Genetics is giving us the opportunity to share that luck with more people.”

Katie countered that this was a strange notion of equality — instead of genetically leveling the playing field, we should work to create a society that values people as they are, with a range of abilities and embodiments. Instead of editing out people who don’t fit societal norms, we should work harder to accommodate them.

Jamie, whose father and grandparents fled Nazis, said that the Nazis thought they were applying Darwinism. “We just need to be very, very careful, and guided by ethics.” He also drew a distinction between disabilities: Deafness, for instance, might not be a trait that we should attempt to edit out. Cystic fibrosis, on the other hand, is a death sentence, and a painful one at that (CF is passed down from both parents to a child; an abnormal gene causes damage to the lungs and digestive system). Not editing out cystic fibrosis is itself unethical, he argued, because we are otherwise condemning the people who live with it to short, painful lives.

Ghida kept her questions focused and provocative, asking the speakers if gene editing would simply reinforce our own racial biases. Julian and Jamie agreed that this presented real challenges — like trying to find a universal ethical system amid cultural and ethical relativism. Julian also cautioned against turning everything into a slippery slope, reiterating his belief that there’s no meaningful difference between gene editing and, for example, pharmaceutical interventions for impulsively violent children. “There’s no difference between genetic enhancements and drugs or social institutions. They all act in the end by changing our biology. What matters are the risks and benefits.”

Katie drew a line between social and medical benefits. The desire to be biologically related to one’s children isn’t a medical benefit, she argued, it’s a social one. Parents can already adopt or use donated eggs or sperm to have children unaffected by certain genetic conditions; using germline editing to “design” children and erase diseases provides no medical benefit when other options are already available. “We need to talk about the ways this will affect society,” she said. Jamie held up the UK’s regulatory model, which would ensure accountability, avoid an absolute ban and pursue the clear benefits available to humanity, and said, “The issue of haves and have-nots — that’s one potential outcome. If we don’t want that outcome, we better start organizing for a different outcome.” We should be equally concerned about outcomes for all children, regardless of wealth or social standing. While Katie agreed that we need a broad public conversation, she said that “it can’t be one where we’ve already skipped over the question of whether we should use [gene editing] at all.” A moratorium on all gene editing is necessary: “Stop here while there is still a line that we can draw clearly.”

Ghida introduced Dr. Govinda Clayton, the debate’s connector, who asked the speakers to broaden their focus to find some very specific points of agreement. One, he said, was that everybody agreed that there are risks involved, despite very different understandings of how those risks should be weighed.

Katie was unwilling to move from her position of calling a moratorium on germline editing. “We can’t build a fair and inclusive society,” she said, if we’re focusing so narrowly on traits, like intelligence, that we believe might benefit future generations. She suggested moving forward with somatic gene editing, where the genetically edited DNA would not be passed down. In a heated moment, Julian said that the lifetime cost of treating cystic fibrosis was about $1 million — but, according to his estimates, gene editing would only cost about $5,000. Somatic editing, he argued, was extremely labor-intensive compared to germline editing, and “a hopeless way of treating something like cystic fibrosis.”

Jamie wholeheartedly agreed with Katie that “we need an empowered, global, inclusive conversation.” Every country in the world, he said, needs to have a regulatory infrastructure. He pointed to a piece he wrote for the Financial Times last year, in which he argues against a moratorium, in part saying that scientists — like, infamously, rogue Chinese scientist He Jiankui — are moving ahead regardless.

Julian responded to a number of online questions about whether it was humanity’s place to “play God.” We’re already doing that, he argued — the real question is how should we play God. We already vaccinate, provide pain relief during labor and use other medical interventions.

The post show segment, hosted by Doha Debates correspondent Nelufar Hedayat, involved a global audience via Twitter, Instagram and videoconferencing. The conversation was truly global, with comments and questions streaming in from Nigeria to Afghanistan, Poland to Sweden, Brazil to the U.S. Govinda noted that while the debate began with views that were seemingly irreconcilable, when the speakers got very specific with real-world examples, they began to find a few points of agreement.

Nelufar interviewed special guest Nawaal Akram, a Qatari disability rights activist, athlete and comedian. Nawaal has muscular dystrophy, a genetic condition, and said that for her, this debate was personal. So much “time and research is done for the future, but right now, so many people with disabilities cannot afford the medicine, we cannot afford health care, we cannot afford education.” To Julian’s point about cost savings — the estimated lifetime cost of treating cystic fibrosis at $1 million, versus only a few thousand for germline editing — Nawaal said, “The real question is: Why is it costing $1 million to afford something that we really need?” Nelufar asked if Nawaal could have a baby that would inherit her muscular dystrophy, would she use gene editing to remove that risk? “If I lived in a world where my child wouldn’t be discriminated and had affordable medical care, I wouldn’t mind.” But if she lived in today’s world — a world with deeply ingrained discrimination and unaffordable medical care, due to people wanting to profit off of other’s disabilities — she said she would probably use CRISPR to edit out the muscular dystrophy gene.

At three points during the debate, the online audience was asked to allocate 100 points however they wished to each of the three positions. After the opening statements, Katie’s anti-gene editing position garnered the strongest support, with 51 percent. Jamie’s middle position had 31 percent, and Julian’s argument for gene editing had 17 percent. By the end of the debate, the support for the middle and anti positions were nearly the same, with Jamie receiving 36 percent and Katie 38 percent. Julian still lagged at 25 percent.

Most of the audience, then, was cautious about gene editing, despite Julian’s and Jamie’s arguments for its benefits to future generations. A viewer sent in an Instagram video that neatly summarized the concerns that Nawaal and others shared: Regardless of our intentions, gene editing will undoubtedly deepen inequality in a world that is already divided by a staggering amount of it.

All our speakers, whether they felt wary or energized by the potential of gene editing, agreed on one important point: It’s filled with risks and challenges, and we can’t build a fairer and more inclusive world without broad agreement on its ethical considerations.