Most creation myths come with a curse attached. Adam and Eve had to labour for eating that knowledge-giving apple. Prometheus notoriously got a bad time for stealing life-giving fire. And throughout history, technological advancements have proven a Pandora’s box of unintended consequences.
It’s one such advancement that’s causing Dr Neal Baer to lose sleep. “I’m very worried about CRISPR,” the American paediatrician tells me over Zoom from Paris. “CRISPR keeps me up all night.” It sounds like a way to keep your salad fresh, and its full title — clustered regularly interspaced short palindromic repeats — is even less enlightening. Put simply, it’s a gene-editing tool that allows scientists to cut and paste DNA gene sequences, snipping out unwanted genes and replacing them with something else. Peoples stem cells can be harvested, edited in a lab and re-transplanted.
As a Harvard-educated doctor and a television writer and producer, Dr Baer is uniquely placed to communicate the thorny bio-ethical issues of this exciting — and terrifying — technology. It is the focus of a new essay collection, The Promise and Peril of CRISPR, which he has edited.
The potential benefits to humanity from using CRISPR could be huge. “I call it the Promise, because there are many good things that I think can and will happen and are happening. For instance, we can cure sickle cell disease now,” says Dr Baer. “It’s a horrible disease. Shortened life span by 20 years. Terrible, terrible pain and suffering. Kids having strokes. So this is a way to help humanity.” There are more than 17,000 people living with this inherited blood disorder in the UK alone. CRISPR could help cure this, along with more than 7,000 rare genetic conditions, including Duchenne muscular dystrophy, Tay-Sachs disease and cystic fibrosis. But messing around with human DNA could have unintended consequences — part of what Dr Baer calls the Peril.
Passing on change
The paediatrician is keen to share his knowledge and fears with a wide audience. “Storytelling”, even as a doctor, is vitally important. He has worked on TV shows such as NBC’s Law and Order: SVU and recently brought CRISPR into a bioterrorism plotline for Netflix’s Designated Survivor, starring Kiefer Sutherland, on which he is executive producer. “That’s where TV is so wonderful,” he says. “Because you can tell these impactful stories, but always grounded in the science.”
What, then, is the Peril? There is a difference between editing somatic cells, which cannot be passed on to future generations, and swapping out germline cells, which are heritable. “Conceivably — pun intended — we could start to change evolution, because we could dabble and edit out things and that change could be passed on to future generations,” explains Dr Baer. “What’s interesting about that is that evolution is a process of making very slow adjustments over millennia, whereas CRISPR cuts that time, possibly to just years.” Dr Baer references the 1997 film Gattica, which imagined a future humanity where eugenics became the norm. “This was all a fantasy some years ago. Now it’s coming to pass.”
In 2018, there was uproar in the bioethics community when Dr He Jiankui, a Chinese biophysicist, revealed he had edited the genome of an embryo producing twins — the first genetically edited human babies. Born to an HIV-positive father and an HIV-negative mother, the children’s DNA had been modified to make them immune to HIV. As it was germline editing, a mutation had been added rather than removed. “Importantly, that means that that embryo, if it grows into an adult, can pass that mutation — or that edit — on to his or her children,” Dr Baer explains.
Dr He was fined three million yuan (£330,707) and sentenced to three years in prison. For Dr Baer, the He Jiankui affair is proof that laws, or scientists supervising their own, are not enough. “There are agreements and laws that prevent cloning and doing germline editing. But that doesn’t mean scientists won’t do it,” he says. “We have laws that people break all the time. People drive drunk. People murder.”
Difference or disease?
There are issues around eugenics, where natural variability becomes pathologised
Messing with genetic destiny over disease is one thing, but Dr Baer has dire warnings about the dual technology of CRISPR — where something can be used for both civilian and military purposes. “It’s really important that we consider the possibilities of enhancement,” he says. “For instance, it’s been reported that in China and in Russia, they’re doing research on soldiers to make them sleep less, possibly have less fear.” There are also genetic mutations that make people impervious to pain. “Imagine that we could make that mutation in soldiers,” he says.
CRISPR could also change the modern battlefield in the form of bioweapons. “We can make biological weapons without CRISPR, but it might make it much easier and more accessible,” warns Dr Baer. All a rogue scientist would need is access to a DNA synthesiser and DNA sequences to create what Dr Baer describes as “genetic weapons of mass destruction” in the form of pathogens, neurotoxins, or even entirely new synthetic organisms.
Even something positive, like curing disease, can cause issues. “I’m interested in social justice issues around health,” says Dr Baer. “When new technologies come along that have the potential to make a lot of money, access is going to be a big issue — who’s going to get it, who’s not.” Curing sickle cell anaemia, for example, is very expensive with CRISPR — between $2 million to $3 million in the US for a single application.
Then there are issues around eugenics, where natural variability becomes pathologised. “We often make decisions that are really harmful to people,” states Dr Baer. Neurodivergent conditions such as autism and ADHD have significant genetic components, but to apply CRISPR to reproductive health in this arena reframes difference as disease.
Too often, society has rushed the application of technologies with potentially seismic but devastating impact. With The Promise and Peril, Dr Baer hopes we won’t repeat that mistake.
The Promise and Peril of CRISPR is out now (£41.50, John Hopkins University Press)
