Why the Panic Over "Designer Babies" Is the Wrong Worry
BIG QUESTION OF THE MONTH: Should we use CRISPR, the new technique that enables precise DNA editing, to change the genes of human embryos to eradicate disease--or even to enhance desirable traits? LeapsMag invited three leading experts to weigh in.
CRISPR is producing an important revolution in the biosciences, a revolution that will change our world in fundamental ways. Its implications need to be discussed and debated, and not just by scientists and ethicists. Unfortunately, so far we are debating the wrong issues.
Controversy has raged about editing human genes, particularly the DNA of embryos that could pass the changes down to their descendants. This technology, human germline editing, seems highly unlikely to be broadly available for at least the next few decades; if and when it is, it may well be unimportant.
Human germline editing is unlikely to happen soon because it has important safety risks but almost no significant benefits.
Human germline editing is unlikely to happen soon because it has important safety risks but almost no significant benefits. The risks – harm to babies – are compelling. We care a lot about babies. A technology that worked 95 percent of the time (and produced disabled or dying infants "only" five percent of the time) would be a disaster. Our concern for babies will lead, at the least, to rigorous legal requirements for preapproval safety testing. Many countries will just impose flat bans.
But these risks also have implications beyond safety regulation. For this technology to take off, physicians, assisted reproduction clinics, and geneticists will have to be willing to put their reputations – and their malpractice liability – on the line. And prospective mothers will have to be willing to take unknown risks with their children.
Sometimes, large and unknown risks are worth taking, but not here. For the next few decades, human germline editing offers almost no substantial benefits, for health or for enhancement.
Prospective parents already have a tried and true alternative to avoid having children with genetic diseases: preimplantation genetic diagnosis (PGD). In PGD, clinicians remove cells from three- to five-day-old embryos. Those cells are then tested to see which embryos would inherit the disease and which would not. This technology has been in use for over 27 years and is safe and effective. Rather than engaging in editing an embryo's disease-causing DNA, parents can just select embryos without those DNA variations. For so-called autosomal recessive diseases, three out of four embryos, on average, will be disease free; for autosomal dominant diseases, half will be.
Only a handful of prospective parents would need to use gene editing to avoid genetic disease.
Couples where each has the same recessive condition (cystic fibrosis) or where one of them has the terrible luck to have two copies of the DNA variant for a dominant disease (Huntington's disease). In those cases, the prospective parents would need to stay alive long enough to be able, and be sufficiently healthy to want, to have children. In a world of 7.3 billion humans, there will be some such cases, but they will probably be no more than a few thousand – or hundred.
People are also concerned about germline editing for genetic enhancement. But this is also unlikely anytime soon. We know basically nothing about genetic variations that enhance people beyond normal. For example, we know hundreds of genes that, when damaged, affect intelligence – but these all cause very low intelligence. We know of no variations that non-trivially increase it.
Over the next few decades, we might (or might not) learn about complex diseases where several genes are involved, making embryo selection less useful. And we might (or might not) learn about genetic enhancements involving DNA sequences not typically found in prospective parents and so not available to embryo selection. By that time, the safety issues could be resolved.
And, even then, how worried should we be – and about what? A bit, but not very and not about much.
"The human germline genome is not the holy essence of humanity."
The human germline genome is not the holy essence of humanity. For one thing, it doesn't really exist. There are 7.3 billion human germline genomes; each of us has a different one. And those genomes change every generation. I do not have exactly the same genetic variations my parents received from my grandparents; my children do not have exactly the ones I received from my parents. The DNA changed, through mutation, during each generation.
And our editing will usually be insignificant in the context of the whole human genome. For medical purposes, we will change some rare DNA variations that cause disease into the much more common DNA variations that do not cause disease. Rare, nasty variants will become rarer, but civilization changes these frequencies all the time. For instance, the use of insulin has increased the number of people with DNA variations that predispose people to type 1 ("juvenile") diabetes – because now those people live long enough to reproduce. Even agriculture changed our DNA, leading, for example, to more copies of starch-digesting genes. And, in any event, what is the meaningful difference between "fixing" a disease gene in an embryo or waiting to fix it with gene therapy in a born baby . . . other than avoiding the need to repeat the gene therapy in the next generation?
If genetic enhancement ever becomes possible in a non-trivial way, it would raise important questions, but questions about enhancement generally and not fundamentally about genetics. Enhancement through drugs, prosthetics, brain-computer interfaces, genes, or tools (like the laptop I wrote this on) all raise similar ethical issues. We can use the decades we will have to try to think more systematically about the ethical and policy issues for all enhancements. We should not panic about germline genetic enhancement.
One superficially appealing argument is that we are not wise enough to change our own genomes. This ignores the fact that we have been changing our genomes, inadvertently, since at least the dawn of civilization. We do not have to be wise enough to change our genome perfectly; we just need to be wise enough to change it better than the random and unforeseen ways we change it now. That should not be beyond our power.
Human germline editing will not be a concern for several decades and it may never be an important concern. What should we be paying attention to?
Non-human genome editing. Governments, researchers, and even do-it-yourself hobbyists can use CRISPR, especially when coupled with a technique called "gene drive," to change the genomes of whole species of living things – domestic or wild; animal, vegetable, or microbial – cheaply, easily, and before we even know it is happening. We care much less about mosquito babies than human ones and our legal structures are not built for wise and nuanced regulation of this kind of genome editing. Those issues demand our urgent attention – if we can tear ourselves away from dramatic but less important visions of "designer babies."
Editor's Note: Check out the viewpoints expressing condemnation and enthusiastic support.
The Friday Five covers five stories in research that you may have missed this week. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend.
Here are the promising studies covered in this week's Friday Five, featuring interviews with Dr. David Spiegel, associate chair of psychiatry and behavioral sciences at Stanford, and Dr. Filip Swirski, professor of medicine and cardiology at the Icahn School of Medicine at Mount Sinai.
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Here are the promising studies covered in this week's Friday Five, featuring interviews with Dr. David Spiegel, associate chair of psychiatry and behavioral sciences at Stanford, and Dr. Filip Swirski, professor of medicine and cardiology at the Icahn School of Medicine at Mount Sinai.
- Breathing this way cuts down on anxiety*
- Could your fasting regimen make you sick?
- This type of job makes men more virile
- 3D printed hearts could save your life
- Yet another potential benefit of metformin
* This video with Dr. Andrew Huberman of Stanford shows exactly how to do the breathing practice.
This podcast originally aired on March 3, 2023.
Breakthrough drones deliver breast milk in rural Uruguay
Until three months ago, nurse Leopoldina Castelli used to send bottles of breast milk to nourish babies in the remote areas of Tacuarembó, in northern Uruguay, by way of ambulances or military trucks. That is, if the vehicles were available and the roads were passable, which wasn’t always the case. Now, five days per week, she stands by a runway at the hospital, located in Tacuarembó’s capital, watching a drone take off and disappear from view, carrying the milk to clinics that serve the babies’ families.
The drones can fly as far as 62 miles. Long distances and rough roads are no obstacles. The babies, whose mothers struggle to produce sufficient milk and cannot afford formula, now receive ample supplies for healthy growth. “Today we provided nourishment to a significantly larger number of children, and this is something that deeply moves me,” Castelli says.
About two decades ago, the Tacuarembó hospital established its own milk bank, supported by donations from mothers across Tacuarembó. Over the years, the bank has provided milk to infants immediately after birth. It's helped drive a “significant and sustained” decrease in infant mortality, says the hospital director, Ciro Ferreira.
But these children need breast milk throughout their first six months, if not longer, to prevent malnutrition and other illnesses that are prevalent in rural Tacuarembó. Ground transport isn't quick or reliable enough to meet this goal. It can take several hours, during which the milk may spoil due to a lack of refrigeration.
The battery-powered drones have been the difference-maker. The project to develop them, financed by the UNICEF Innovation Fund, is the first of its kind in Latin America. To Castelli, it's nothing short of a revolution. Tacuarembó Hospital, along with three rural clinics in the most impoverished part of Uruguay, are its leaders.
"This marks the first occasion when the public health system has been directly impacted [by our technology]," says Sebastián Macías, the CEO and co-founder of Cielum, an engineer at the University Republic, which collaborated on the technology with a Uruguayan company called Cielum and a Swiss company, Rigitech.
The drone can achieve a top speed of up to 68 miles per hour, is capable of flying in light rain, and can withstand winds of up to 30 miles per hour at a maximum altitude of 120 meters.
"We have succeeded in embracing the mothers from rural areas who were previously slipping through the cracks of the system," says Ferreira, the hospital director. He envisions an expansion of the service so it can improve health for children in other rural areas.
Nurses load the drone for breast milk delivery.
Sebastián Macías - Cielum
The star aircraft
The drone, which costs approximately $70,000, was specifically designed for the transportation of biological materials. Constructed from carbon fiber, it's three meters wide, two meters long and weighs 42 pounds when fully loaded. Additionally, it is equipped with a ballistic parachute to ensure a safe descent in case the technology fails in midair. Furthermore, it can achieve a top speed of 68 miles per hour, fly in light rain, and withstand winds of 30 miles per hour at a height of 120 meters.
Inside, the drones feature three refrigerated compartments that maintain a stable temperature and adhere to the United Nations’ standards for transporting perishable products. These compartments accommodate four gallons or 6.5 pounds of cargo. According to Macías, that's more than sufficient to carry a week’s worth of milk for one infant on just two flights, or 3.3 pounds of blood samples collected in a rural clinic.
“From an energy perspective, it serves as an efficient mode of transportation and helps reduce the carbon emissions associated with using an ambulance,” said Macías. Plus, the ambulance can remain available in the town.
Macías, who has led software development for the drone, and three other technicians have been trained to operate it. They ensure that the drone stays on course, monitor weather conditions and implement emergency changes when needed. The software displays the in-flight positions of the drones in relation to other aircraft. All agricultural planes in the region receive notification about the drone's flight path, departure and arrival times, and current location.
The future: doubling the drone's reach
Forty-five days after its inaugural flight, the drone is now making five flights per week. It serves two routes: 34 miles to Curtina and 31 miles to Tambores. The drone reaches Curtina in 50 minutes while ambulances take double that time, partly due to the subpar road conditions. Pueblo Ansina, located 40 miles from the state capital, will soon be introduced as the third destination.
Overall, the drone’s schedule is expected to become much busier, with plans to accomplish 20 weekly flights by the end of October and over 30 in 2024. Given the drone’s speed, Macías is contemplating using it to transport cancer medications as well.
“When it comes to using drones to save lives, for us, the sky is not the limit," says Ciro Ferreira, Tacuarembó hospital director.
In future trips to clinics in San Gregorio de Polanco and Caraguatá, the drone will be pushed to the limit. At these locations, a battery change will be necessary, but it's worth it. The route will cover up to 10 rural Tacuarembó clinics plus one hospital outside Tacuarembó, in Rivera, close to the border with Brazil. Currently, because of a shortage of ambulances, the delivery of pasteurized breast milk to Rivera only occurs every 15 days.
“The expansion to Rivera will include 100,000 more inhabitants, doubling the healthcare reach,” said Ferreira, the director of the Tacuarembó Hospital. In itself, Ferreira's hospital serves the medical needs of 500,000 people as one of the largest in Uruguay's interior.
Alejandro Del Estal, an aeronautical engineer at Rigitech, traveled from Europe to Tacuarembó to oversee the construction of the vertiports – the defined areas that can support drones’ take-off and landing – and the first flights. He pointed out that once the flight network between hospitals and rural polyclinics is complete in Uruguay, it will rank among the five most extensive drone routes in the world for any activity, including healthcare and commercial uses.
Cielum is already working on the long-term sustainability of the project. The aim is to have more drones operating in other rural regions in the western and northern parts of the country. The company has received inquiries from Argentina and Colombia, but, as Macías pointed out, they are exercising caution when making commitments. Expansion will depend on the development of each country’s regulations for airspace use.
For Ferreira, the advantages in Uruguay are evident: "This approach enables us to bridge the geographical gap, enhance healthcare accessibility, and reduce the time required for diagnosing and treating rural inhabitants, all without the necessity of them traveling to the hospital,” he says. "When it comes to using drones to save lives, for us, the sky is not the limit."