We can’t “make American children healthy again” without tackling the gun crisis

Note for readers: This newsletter discusses gun violence, a raw and tragic issue in America. It was already in progress on Wednesday when a school shooting occurred at Evergreen High School in Colorado and Charlie Kirk was shot and killed at Utah Valley University. 

Earlier this week, the Trump administration’s Make America Healthy Again movement released a strategy for improving the health and well-being of American children. The report was titled—you guessed it—Make Our Children Healthy Again.

Robert F. Kennedy Jr., who leads the Department of Health and Human Services, and his colleagues are focusing on four key aspects of child health: diet, exercise, chemical exposure, and overmedicalization.

Anyone who’s been listening to RFK Jr. posturing on health and wellness won’t be surprised by these priorities. And the first two are pretty obvious. On the whole, American children should be eating more healthily. And they should be getting more exercise.

But there’s a glaring omission. The leading cause of death for American children and teenagers isn’t ultraprocessed food or exposure to some chemical. It’s gun violence

Yesterday’s news of yet more high-profile shootings at schools in the US throws this disconnect into even sharper relief. Experts believe it is time to treat gun violence in the US as what it is: a public health crisis.

I live in London, UK, with my husband and two young children. We don’t live in a particularly fancy part of the city—in one recent ranking of London boroughs from most to least posh, ours came in at 30th out of 33. I do worry about crime. But I don’t worry about gun violence.

That changed when I temporarily moved my family to the US a couple of years ago. We rented the ground-floor apartment of a lovely home in Cambridge, Massachusetts—a beautiful area with good schools, pastel-colored houses, and fluffy rabbits hopping about. It wasn’t until after we’d moved in that my landlord told me he had guns in the basement.

My daughter joined the kindergarten of a local school that specialized in music, and we took her younger sister along to watch the kids sing songs about friendship. It was all so heartwarming—until we noticed the school security officer at the entrance carrying a gun.

Later in the year, I received an email alert from the superintendent of the Cambridge Public Schools. “At approximately 1:45 this afternoon, a Cambridge Police Department Youth Officer assigned to Cambridge Rindge and Latin School accidentally discharged their firearm while using a staff bathroom inside the school,” the message began. “The school day was not disrupted.”

These experiences, among others, truly brought home to me the cultural differences over firearms between the US and the UK (along with most other countries). For the first time, I worried about my children’s exposure to them. I banned my children from accessing parts of the house. I felt guilty that my four-year-old had to learn what to do if a gunman entered her school. 

But it’s the statistics that are the most upsetting.

In 2023, 46,728 people died from gun violence in the US, according to a report published in June by the Johns Hopkins Bloomberg School of Public Health. That includes both homicides and suicides, and it breaks down to 128 deaths per day, on average. The majority of those who die from gun violence are adults. But the figures for children are sickening, too. In 2023, 2,566 young people died from gun violence. Of those, 234 were under the age of 10.

Gun death rates among children have more than doubled since 2013. Firearms are involved in more child deaths than cancer or car crashes.

Many other children survive gun violence with nonfatal—but often life-changing—injuries. And the impacts are felt beyond those who are physically injured. Witnessing gun violence or hearing gunshots can understandably cause fear, sadness, and distress.  

That’s worth bearing in mind when you consider that there have been 434 school shootings in the US since Columbine in 1999. The Washington Post estimates that 397,000 students have experienced gun violence at school in that period. Another school shooting took place at Evergreen High School in Colorado on Wednesday, adding to that total.

“Being indirectly exposed to gun violence takes its toll on our mental health and children’s ability to learn,” says Daniel Webster, Bloomberg Professor of American Health at the Johns Hopkins Center for Gun Violence Solutions in Baltimore.

The MAHA report states that “American youth face a mental health crisis,” going on to note that “suicide deaths among 10- to 24-year-olds increased by 62% from 2007 to 2021” and that “suicide is now the leading cause of death in teens aged 15-19.” What it doesn’t say is that around half of these suicides involve guns.

“When you add all these dimensions, [gun violence is] a very huge public health problem,” says Webster.

Researchers who study gun violence have been saying the same thing for years. And in 2024, then US Surgeon General Vivek Murthy declared it a public health crisis. “We don’t have to subject our children to the ongoing horror of firearm violence in America,” Murthy said in a statement at the time. Instead, he argued, we should tackle the problem using a public health approach.

Part of that approach involves identifying who is at the greatest risk and offering support to lower that risk, says Webster. Young men who live in poor communities tend to have the highest risk of gun violence, he says, as do those who experience crisis or turmoil. Trying to mediate conflicts or limit access to firearms, even temporarily, can help lower the incidence of gun violence, he says.

There’s an element of social contagion, too, adds Webster. Shooting begets more shooting. He likens it to the outbreak of an infectious disease. “When more people get vaccinated … infection rates go down,” he says. “Almost exactly the same thing happens with gun violence.”

But existing efforts are already under threat. The Trump administration has eliminated hundreds of millions of dollars in grants for organizations working to reduce gun violence.

Webster thinks the MAHA report has “missed the mark” when it comes to the health and well-being of children in the US. “This document is almost the polar opposite to how many people in public health think,” he says. “We have to acknowledge that injuries and deaths from firearms are a big threat to the health and safety of children and adolescents.”

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

2025 Innovator of the Year: Sneha Goenka for developing an ultra-fast sequencing technology

Sneha Goenka is one of MIT Technology Review’s 2025 Innovators Under 35. Meet the rest of this year’s honorees. 

Up to a quarter of children entering intensive care have undiagnosed genetic conditions. To be treated properly, they must first get diagnoses—which means having their genomes sequenced. This process typically takes up to seven weeks. Sadly, that’s often too slow to save a critically ill child.

Hospitals may soon have a faster option, thanks to a groundbreaking system built in part by Sneha Goenka, an assistant professor of electrical and computer engineering at Princeton—and MIT Technology Review’s 2025 Innovator of the Year. 

Five years ago, Goenka and her colleagues designed a rapid-sequencing pipeline that can provide a genetic diagnosis in less than eight hours. Goenka’s software computations and hardware architectures were critical to speeding up each stage of the process. 

“Her work made everyone realize that genome sequencing is not only for research and medical application in the future but can have immediate impact on patient care,” says Jeroen de Ridder, a professor at UMC Utrecht in the Netherlands, who has developed an ultrafast sequencing tool for cancer diagnosis. 

Now, as cofounder and scientific lead of a new company, she is working to make that technology widely available to patients around the world.

Goenka grew up in Mumbai, India. Her mother was an advocate for women’s education, but as a child, Goenka had to fight to persuade other family members to let her continue her studies. She moved away from home at 15 to attend her final two years of school and enroll in a premier test-­preparation academy in Kota, Rajasthan. Thanks to that education, she passed what she describes as “one of the most competitive exams in the world,” to get into the Indian Institute of Technology Bombay. 

Once admitted to a combined bachelor’s and master’s program in electrical engineering, she found that “it was a real boys’ club.” But Goenka excelled in developing computer architecture systems that accelerate computation. As an undergraduate, she began applying those skills to medicine, driven by her desire to “have real-world impact”—in part because she had seen her family struggle with painful uncertainty after her brother was born prematurely when she was eight years old. 

While working on a PhD in electrical engineering at Stanford, she turned her focus to evolutionary and clinical genomics. One day a senior colleague, Euan Ashley, presented her with a problem. He said, “We want to see how fast we can make a genetic diagnosis. If you had unlimited funds and resources, just how fast do you think you could make the compute?”

Streaming DNA

A genetic diagnosis starts with a blood sample, which is prepped to extract the DNA—a process that takes about three hours. Next that DNA needs to be “read.” One of the world’s leading long-read sequencing technologies, developed by Oxford Nanopore Technologies, can generate highly detailed raw data of an individual’s genetic code in about an hour and a half. Unfortunately, processing all this data to identify mutations can take another 21 hours. Shipping samples to a central lab and figuring out which mutations are of interest often leads the process to stretch out to weeks. 

Goenka saw a better way: Build a real-time system that could “stream” the sequencing data, analyzing it as it was being generated, like streaming a film on Netflix rather than downloading it to watch later.

Sneha Goenka

To do this, she designed a cloud computing architecture to pull in more processing power. Goenka’s first challenge was to increase the speed at which her team could upload the raw data for processing, by streamlining the requests between the sequencer and the cloud to avoid unnecessary “chatter.” She worked out the exact number of communication channels needed—and created algorithms that allowed those channels to be reused in the most efficient way.

The next challenge was “base calling”—converting the raw signal from the sequencing machine into the nucleotide bases A, C, T, and G, the language that makes up our DNA. Rather than using a central node to orchestrate this process, which is an inefficient, error-prone approach, Goenka wrote software to automatically assign dozens of data streams directly from the sequencer to dedicated nodes in the cloud.

Meet the rest of this year’s 
Innovators Under 35.

Then, to identify mutations, the sequences were aligned for comparison with a reference genome. She coded a custom program that triggers alignment as soon as base calling finishes for one batch of sequences while simultaneously initiating base calling for the next batch, thus ensuring that the system’s computational resources are used efficiently.

Add all these im­­prove­­ments together, and Goenka’s approach reduced the total time required to analyze a genome for mutations from around 20 hours to 1.5 hours. Finally, the team worked with genetic counselors and physicians to create a filter that identified which mutations were most critical to a person’s health, and that set was then given a final manual curation by a genetic specialist. These final stages take up to three hours. The technology was close to being fully operational when, suddenly, the first patient arrived. 

A critical test

When 13-year-old Matthew was flown to Stanford’s children’s hospital in 2021, he was struggling to breathe and his heart was failing. Doctors needed to know whether the inflammation in his heart was due to a virus or to a genetic mutation that would necessitate a transplant.  

His blood was drawn on a Thursday. The transplant committee made its decisions on Fridays. “It meant we had a small window of time,” says Goenka.

Goenka was in Mumbai when the sequencing began. She stayed up all night, monitoring the computations. That was when the project stopped being about getting faster for the sake of it, she says: “It became about ‘How fast can we get this result to save this person’s life?’”

The results revealed a genetic mutation that explained Matthew’s condition, and he was placed on the transplant list the next day. Three weeks later, he received a new heart. “He’s doing great now,” Goenka says.

So far, Goenka’s technology has been tested on 26 patients, including Matthew. Her pipeline is “directly affecting the medical care of newborns in the Stanford intensive care units,” Ashley says.

Now she’s aiming for even broader impact—Goenka and her colleagues are laying the groundwork for a startup that they hope will bring the technology to market and make sure it reaches as many patients as possible. Meanwhile, she has been refining the computational pipeline, reducing the time to diagnosis to about six hours.

The demand is clear, she says: “In an in-depth study involving more than a dozen laboratory directors and neonatologists, every respondent stressed urgency. One director put it succinctly: ‘I need this platform today—preferably yesterday.’”

Goenka is also developing software to make the technology more inclusive. The reference genome is skewed toward people of European descent. The Human Pangenome Project is an international collaboration to create reference genomes from more diverse populations, which Goenka aims to use to personalize her team’s filters, allowing them to flag mutations that may be more prevalent in the population to which a patient belongs.

Since seeing her work, Goenka’s extended family has become more appreciative of her education and career. “The entire family is very proud about the impact I’ve made,” she says. 

Helen Thomson is a freelance science journalist based in London.

Putin says organ transplants could grant immortality. Not quite.

This week I’m writing from Manchester, where I’ve been attending a conference on aging. Wednesday was full of talks and presentations by scientists who are trying to understand the nitty-gritty of aging—all the way down to the molecular level. Once we can understand the complex biology of aging, we should be able to slow or prevent the onset of age-related diseases, they hope.

Then my editor forwarded me a video of the leaders of Russia and China talking about immortality. “These days at 70 years old you are still a child,” China’s Xi Jinping, 72, was translated as saying, according to footage livestreamed by CCTV to multiple media outlets.

“With the developments of biotechnology, human organs can be continuously transplanted, and people can live younger and younger, and even achieve immortality,” Russia’s Vladimir Putin, also 72, is reported to have replied.

Russian President Vladimir Putin, Chinese President Xi Jinping and North Korean leader Kim Jong Un walk side by side

SERGEI BOBYLEV, SPUTNIK, KREMLIN POOL PHOTO VIA AP

There’s a striking contrast between that radical vision and the incremental longevity science presented at the meeting. Repeated rounds of organ transplantation surgery aren’t likely to help anyone radically extend their lifespan anytime soon.

First, back to Putin’s proposal: the idea of continually replacing aged organs to stay young. It’s a simplistic way to think about aging. After all, aging is so complicated that researchers can’t agree on what causes it, why it occurs, or even how to define it, let alone “treat” it.

Having said that, there may be some merit to the idea of repairing worn-out body parts with biological or synthetic replacements. Replacement therapies—including bioengineered organs—are being developed by multiple research teams. Some have already been tested in people. This week, let’s take a look at the idea of replacement therapies.

No one fully understands why our organs start to fail with age. On the face of it, replacing them seems like a good idea. After all, we already know how to do organ transplants. They’ve been a part of medicine since the 1950s and have been used to save hundreds of thousands of lives in the US alone.

And replacing old organs with young ones might have more broadly beneficial effects. When a young mouse is stitched to an old one, the older mouse benefits from the arrangement, and its health seems to improve.

The problem is that we don’t really know why. We don’t know what it is about young body tissues that makes them health-promoting. We don’t know how long these effects might last in a person. We don’t know how different organ transplants will compare, either. Might a young heart be more beneficial than a young liver? No one knows.

And that’s before you consider the practicalities of organ transplantation. There is already a shortage of donor organs—thousands of people die on waiting lists. Transplantation requires major surgery and, typically, a lifetime of prescription drugs that damp down the immune system, leaving a person more susceptible to certain infections and diseases.

So the idea of repeated organ transplantations shouldn’t really be a particularly appealing one. “I don’t think that’s going to happen anytime soon,” says Jesse Poganik, who studies aging at Brigham and Women’s Hospital in Boston and is also in Manchester for the meeting.

Poganik has been collaborating with transplant surgeons in his own research. “The surgeries are good, but they’re not simple,” he tells me. And they come with real risks. His own 24-year-old cousin developed a form of cancer after a liver and heart transplant. She died a few weeks ago, he says.

So when it comes to replacing worn-out organs, scientists are looking for both biological and synthetic alternatives.  

We’ve been replacing body parts for centuries. Wooden toes were used as far back as the 15th century. Joint replacements have been around for more than a hundred years. And major innovations over the last 70 years have given us devices like pacemakers, hearing aids, brain implants, and artificial hearts.

Scientists are exploring other ways to make tissues and organs, too. There are different approaches here, but they include everything from injecting stem cells to seeding “scaffolds” with cells in a lab.

In 1999, researchers used volunteers’ own cells to seed bladder-shaped collagen scaffolds. The resulting bioengineered bladders went on to be transplanted into seven people in an initial trial

Now scientists are working on more complicated organs. Jean Hébert, a program manager at the US government’s Advanced Research Projects Agency for Health, has been exploring ways to gradually replace the cells in a person’s brain. The idea is that, eventually, the recipient will end up with a young brain.

Hébert showed my colleague Antonio Regalado how, in his early experiments, he removed parts of mice’s brains and replaced them with embryonic stem cells. That work seems a world away from the biochemical studies being presented at the British Society for Research on Ageing annual meeting in Manchester, where I am now.

On Wednesday, one scientist described how he’d been testing potential longevity drugs on the tiny nematode worm C. elegans. These worms live for only about 15 to 40 days, and his team can perform tens of thousands of experiments with them. About 40% of the drugs that extend lifespan in C. elegans also help mice live longer, he told us.

To me, that’s not an amazing hit rate. And we don’t know how many of those drugs will work in people. Probably less than 40% of that 40%.

Other scientists presented work on chemical reactions happening at the cellular level. It was deep, basic science, and my takeaway was that there’s a lot aging researchers still don’t fully understand.

It will take years—if not decades—to get the full picture of aging at the molecular level. And if we rely on a series of experiments in worms, and then mice, and then humans, we’re unlikely to make progress for a really long time. In that context, the idea of replacement therapy feels like a shortcut.

“Replacement is a really exciting avenue because you don’t have to understand the biology of aging as much,” says Sierra Lore, who studies aging at the University of Copenhagen in Denmark and the Buck Institute for Research on Aging in Novato, California.

Lore says she started her research career studying aging at the molecular level, but she soon changed course. She now plans to focus her attention on replacement therapies. “I very quickly realized we’re decades away [from understanding the molecular processes that underlie aging],” she says. “Why don’t we just take what we already know—replacement—and try to understand and apply it better?”

So perhaps Putin’s straightforward approach to delaying aging holds some merit. Whether it will grant him immortality is another matter.

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

RFK Jr’s plan to improve America’s diet is missing the point

A lot of Americans don’t eat well. And they’re paying for it with their health. A diet high in sugar, sodium, and saturated fat can increase the risk of problems like diabetes, heart disease, and kidney disease, to name a few. And those are among the leading causes of death in the US.

This is hardly news. But this week Robert F Kennedy Jr., who heads the US Department of Health and Human Services, floated a new solution to the problem. Kennedy and education secretary Linda McMahon think that teaching medical students more about the role of nutrition in health could help turn things around.

“I’m working with Linda on forcing medical schools … to put nutrition into medical school education,” Kennedy said during a cabinet meeting on August 26. The next day, HHS released a statement calling for “increased nutrition education” for medical students.

“We can reverse the chronic-disease epidemic simply by changing our diets and lifestyles,” Kennedy said in an accompanying video statement. “But to do that, we need nutrition to be a basic part of every doctor’s training.”

It certainly sounds like a good idea. If more Americans ate a healthier diet, we could expect to see a decrease in those diseases. But this framing of America’s health crisis is overly simplistic, especially given that plenty of the administration’s other actions have directly undermined health in multiple ways—including by canceling a vital nutrition education program.

At any rate, there are other, more effective ways to tackle the chronic-disease crisis.

The biggest killers, heart disease and stroke, are responsible for more than a third of deaths, according to the US Centers for Disease Control and Prevention. A healthy diet can reduce your risk of developing those conditions. And it makes total sense to educate the future doctors of America about nutrition.

Medical bodies are on board with the idea, too. “The importance of nutrition in medical education is increasingly clear, and we support expanded, evidence-based instruction to better equip physicians to prevent and manage chronic disease and improve patient outcomes,” David H. Aizuss, chair of the American Medical Association’s board of trustees, said in a statement.

But it’s not as though medical students aren’t getting any nutrition education. And that training has increased in the last five years, according to surveys carried out by the American Association of Medical Colleges.

Kennedy has referred to a 2021 survey suggesting that medical students in the US get only around one hour of nutrition education per year. But the AAMC argues that nutrition education increasingly happens through “integrated experiences” rather than stand-alone lectures.

“Medical schools understand the critical role that nutrition plays in preventing, managing, and treating chronic health conditions, and incorporate significant nutrition education across their required curricula,” Alison J. Whelan, AAMC’s chief academic officer, said in a statement.

That’s not to say there isn’t room for improvement. Gabby Headrick, a food systems dietician and associate director of food and nutrition policy at George Washington University’s Institute for Food Safety & Nutrition Security, thinks nutritionists could take a more prominent role in patient care, too.

But it’s somewhat galling for the administration to choose medical education as its focus given the recent cuts in federal funding that will affect health. For example, funding for the National Diabetes Prevention Program, which offers support and guidance to help thousands of people adopt healthy diets and exercise routines, was canceled by the Trump administration in March.

The focus on medical schools also overlooks one of the biggest factors behind poor nutrition in the US: access to healthy food. A recent survey by the Pew Research Center found that increased costs make it harder for most Americans to eat well. Twenty percent of the people surveyed acknowledged that their diets were not healthy.

“So many people know what a healthy diet is, and they know what should be on their plate every night,” says Headrick, who has researched this issue. “But the vast majority of folks just truly do not have the money or the time to get the food on the plate.”

The Supplemental Nutrition Assistance Program (SNAP) has been helping low-income Americans afford some of those healthier foods. It supported over 41 million people in 2024. But under the Trump administration’s tax and spending bill, the program is set to lose around $186 billion in funding over the next 10 years.

Kennedy’s focus is on education. And it just so happens that there is a nutrition education program in place—one that helps people of all ages learn not only what healthy foods are, but how to source them on a budget and use them to prepare meals.

SNAP-Ed, as it’s known, has already provided this support to millions of Americans. Under the Trump administration, it is set to be eliminated.

It is difficult to see how these actions are going to help people adopt healthier diets. What might be a better approach? I put the question to Headrick: If she were in charge, what policies would she enact?

“Universal health care,” she told me. Being able to access health care without risking financial hardship not only improves health outcomes and life expectancy; it also spares people from medical debt—something that affects around 40% of adults in the US, according to a recent survey.

And the Trump administration’s plans to cut federal health spending by about a trillion dollars over the next decade certainly aren’t going to help with that. All told, around 16 million people could lose their health insurance by 2034, according to estimates by the Congressional Budget Office.

“The evidence suggests that if we cut folks’ social benefit programs, such as access to health care and food, we are going to see detrimental impacts,” says Headrick. “And it’s going to cause an increased burden of preventable disease.”

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

RFK Jr’s plan to improve America’s diet is missing the point

A lot of Americans don’t eat well. And they’re paying for it with their health. A diet high in sugar, sodium, and saturated fat can increase the risk of problems like diabetes, heart disease, and kidney disease, to name a few. And those are among the leading causes of death in the US.

This is hardly news. But this week Robert F Kennedy Jr., who heads the US Department of Health and Human Services, floated a new solution to the problem. Kennedy and education secretary Linda McMahon think that teaching medical students more about the role of nutrition in health could help turn things around.

“I’m working with Linda on forcing medical schools … to put nutrition into medical school education,” Kennedy said during a cabinet meeting on August 26. The next day, HHS released a statement calling for “increased nutrition education” for medical students.

“We can reverse the chronic-disease epidemic simply by changing our diets and lifestyles,” Kennedy said in an accompanying video statement. “But to do that, we need nutrition to be a basic part of every doctor’s training.”

It certainly sounds like a good idea. If more Americans ate a healthier diet, we could expect to see a decrease in those diseases. But this framing of America’s health crisis is overly simplistic, especially given that plenty of the administration’s other actions have directly undermined health in multiple ways—including by canceling a vital nutrition education program.

At any rate, there are other, more effective ways to tackle the chronic-disease crisis.

The biggest killers, heart disease and stroke, are responsible for more than a third of deaths, according to the US Centers for Disease Control and Prevention. A healthy diet can reduce your risk of developing those conditions. And it makes total sense to educate the future doctors of America about nutrition.

Medical bodies are on board with the idea, too. “The importance of nutrition in medical education is increasingly clear, and we support expanded, evidence-based instruction to better equip physicians to prevent and manage chronic disease and improve patient outcomes,” David H. Aizuss, chair of the American Medical Association’s board of trustees, said in a statement.

But it’s not as though medical students aren’t getting any nutrition education. And that training has increased in the last five years, according to surveys carried out by the American Association of Medical Colleges.

Kennedy has referred to a 2021 survey suggesting that medical students in the US get only around one hour of nutrition education per year. But the AAMC argues that nutrition education increasingly happens through “integrated experiences” rather than stand-alone lectures.

“Medical schools understand the critical role that nutrition plays in preventing, managing, and treating chronic health conditions, and incorporate significant nutrition education across their required curricula,” Alison J. Whelan, AAMC’s chief academic officer, said in a statement.

That’s not to say there isn’t room for improvement. Gabby Headrick, a food systems dietician and associate director of food and nutrition policy at George Washington University’s Institute for Food Safety & Nutrition Security, thinks nutritionists could take a more prominent role in patient care, too.

But it’s somewhat galling for the administration to choose medical education as its focus given the recent cuts in federal funding that will affect health. For example, funding for the National Diabetes Prevention Program, which offers support and guidance to help thousands of people adopt healthy diets and exercise routines, was canceled by the Trump administration in March.

The focus on medical schools also overlooks one of the biggest factors behind poor nutrition in the US: access to healthy food. A recent survey by the Pew Research Center found that increased costs make it harder for most Americans to eat well. Twenty percent of the people surveyed acknowledged that their diets were not healthy.

“So many people know what a healthy diet is, and they know what should be on their plate every night,” says Headrick, who has researched this issue. “But the vast majority of folks just truly do not have the money or the time to get the food on the plate.”

The Supplemental Nutrition Assistance Program (SNAP) has been helping low-income Americans afford some of those healthier foods. It supported over 41 million people in 2024. But under the Trump administration’s tax and spending bill, the program is set to lose around $186 billion in funding over the next 10 years.

Kennedy’s focus is on education. And it just so happens that there is a nutrition education program in place—one that helps people of all ages learn not only what healthy foods are, but how to source them on a budget and use them to prepare meals.

SNAP-Ed, as it’s known, has already provided this support to millions of Americans. Under the Trump administration, it is set to be eliminated.

It is difficult to see how these actions are going to help people adopt healthier diets. What might be a better approach? I put the question to Headrick: If she were in charge, what policies would she enact?

“Universal health care,” she told me. Being able to access health care without risking financial hardship not only improves health outcomes and life expectancy; it also spares people from medical debt—something that affects around 40% of adults in the US, according to a recent survey.

And the Trump administration’s plans to cut federal health spending by about a trillion dollars over the next decade certainly aren’t going to help with that. All told, around 16 million people could lose their health insurance by 2034, according to estimates by the Congressional Budget Office.

“The evidence suggests that if we cut folks’ social benefit programs, such as access to health care and food, we are going to see detrimental impacts,” says Headrick. “And it’s going to cause an increased burden of preventable disease.”

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

I gave the police access to my DNA—and maybe some of yours

Last year, I added my DNA profile to a private genealogical database, FamilyTreeDNA, and clicked “Yes” to allow the police to search my genes.

In 2018, police in California announced they’d caught the Golden State Killer, a man who had eluded capture for decades. They did it by uploading crime-scene DNA to websites like the one I’d joined, where genealogy hobbyists share genetic profiles to find relatives and explore ancestry. Once the police had “matches” to a few relatives of the killer, they built a large family tree from which they plucked the likely suspect.

This process, called forensic investigative genetic genealogy, or FIGG, has since helped solve hundreds of murders and sexual assaults. Still, while the technology is potent, it’s incompletely realized. It operates via a mishmash of private labs and unregulated websites, like FamilyTree, which give users a choice to opt into or out of police searches. The number of profiles available for search by police hovers around 1.5 million, not yet enough to find matches in all cases.

To do my bit to increase those numbers, I traveled to Springfield, Massachusetts.

The staff of the local district attorney, Anthony D. Gulluni, was giving away free FamilyTree tests at a minor-league hockey game in an effort to widen its DNA net and help solve several cold-case murders. After glancing over a consent form, I spit into a tube and handed it back. According to the promotional material from Gulluni’s office, I’d “become a hero.”

But I wasn’t really driven by some urge to capture distantly related serial killers. Rather, my spit had a less gallant and more quarrelsome motive: to troll privacy advocates whose fears around DNA I think are overblown and unhelpful. By giving up my saliva for inspection, I was going against the view that a person’s DNA is the individualized, sacred text that privacy advocates sometimes claim.

Indeed, the only reason FIGG works is that relatives share DNA: You share about 50% with a parent, 25% with a grandparent, about 12.5% with a first cousin, and so on. When I got my FamilyTree report back, my DNA had “matched” with 3,309 people.

Some people are frightened by FIGG or reject its punitive aims. One European genealogist I know says her DNA is kept private because she opposes the death penalty and doesn’t want to risk aiding US authorities in cases where lethal injection might be applied. But if enough people share their DNA, conscientious objectors won’t matter. Scientists estimate that a database including 2% of the US population, or 6 million people, could identify the source of nearly any crime-scene DNA, given how many distant relatives each of us has.

Scholars of big data have termed this phenomenon “tyranny of the minority.” One person’s voluntary disclosure can end up exposing the same information about many others. And that tyranny can be abused.

DNA information held in private genealogy websites like FamilyTree is lightly guarded by terms of service. These agreements have flip-flopped over time; at one point all users were included in law enforcement searches by default. Rules are easily ignored, too. Recent court filings indicate that the FBI, in its zeal to solve crimes, sometimes barges past restrictions to look for matches in databases whose policies exclude police.

“Noble aims; no rules” is how one genetic genealogist described the overall situation in her field.

My uncertainty grew the more questions I asked. Who even controls my DNA file? That’s not easy to find out. FamilyTree is a brand operated by another company, Gene by Gene, which in 2021 was sold to a third company, MyDNA—ultimately owned by an Australian mogul whose name appears nowhere on its website. When I reached FamilyTree’s general manager, the genealogist Dave Vance, he told me that three-quarters of the profiles on the site were “opted in” to law enforcement searches.

One solution holds that the federal government should organize its own national DNA database for FIGG. But that would require new laws, new technical standards, and a debate about how our society wants to employ this type of big data—not just getting individual consent like mine. No such national project—or consensus—exists.

I’m still ready to join a national crime-fighting database, but I regret doing it the way I did—spitting in a tube on the sidelines of a hockey game and signing a consent form that affects not just me but all my thousands of genetic relatives. To them, I say: Whoops. Your DNA; my bad.

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

Why US federal health agencies are abandoning mRNA vaccines

This time five years ago, we were in the throes of the covid-19 pandemic. By August 2020, we’d seen school closures, national lockdowns, and widespread panic. That year, the coronavirus was responsible for around 3 million deaths, according to the World Health Organization.

Then came the vaccines. The first mRNA vaccines for covid were authorized for use in December 2020. By the end of the following month, over 100 million doses had been administered. Billions more have been administered since then. The vaccines worked well and are thought to have saved millions of lives.

The US government played an important role in the introduction of these vaccines, providing $18 billion to support their development as part of Operation Warp Speed.

But now, that government is turning its back on the technology. Funding is being withdrawn. Partnerships are being canceled. Leaders of US health agencies are casting doubt on the vaccines’ effectiveness and safety. And this week, the director of the National Institutes of Health implied that the reversal was due to a lack of public trust in the technology.

Plenty of claims are being thrown about. Let’s consider the evidence.

mRNA is a molecule found in cells that essentially helps DNA make proteins. The vaccines work in a similar way, except they carry genetic instructions for proteins found on the surface of the coronavirus. This can help train our immune systems to tackle the virus itself.

Research into mRNA vaccines has been underway for decades. But things really kicked into gear when the virus behind covid-19 triggered a pandemic in 2020. A huge international effort—along with plenty of funding—fast-tracked research and development.

The genetic code for the Sars-CoV-2 virus was sequenced in January 2020. The first vaccines were being administered by the end of that year. That’s wildly fast by pharma standards—drugs can typically spend around a decade in development.

And they seemed to work really well. Early trials in tens of thousands of volunteers suggested that Pfizer and BioNTech’s vaccine conferred “95% protection against covid-19.” No vaccine is perfect, but for a disease that was responsible for millions of deaths, the figures were impressive.

Still, there were naysayers. Including Robert F. Kennedy Jr., the notorious antivaccine activist who currently leads the US’s health agencies. He has called covid vaccines “unsafe and ineffective.” In 2021, he petitioned the US Food and Drug Administration to revoke the authorization for covid vaccines. That same year, Instagram removed his account from the platform after he repeatedly shared “debunked claims about the coronavirus or vaccines.”

So perhaps we shouldn’t have been surprised when the US Department of Health and Human Services, which RFK Jr. now heads, announced “the beginning of a coordinated wind-down” of mRNA vaccine development earlier this month. HHS is canceling almost $500 million worth of funding for the technology. “The data show these vaccines fail to protect effectively against upper respiratory infections like covid and flu,” Kennedy said in a statement.

Well, as we’ve seen, the mRNA covid vaccines were hugely effective during the pandemic. And researchers are working on other mRNA vaccines for infections including flu. Our current flu vaccines aren’t ideal—they are produced slowly in a process that requires hen’s eggs, based on predictions about which flu strains are likely to be prominent in the winter. They’re not all that protective.

mRNA vaccines, on the other hand, can be made quickly and cheaply, perhaps once we already know which flu strains we need to protect against. And scientists are making progress with universal flu vaccines—drugs that could potentially protect against multiple flu strains.

Kennedy’s other claim is that the vaccines aren’t safe. There have certainly been reports of adverse events. Usually these are mild and short-lived—most people will be familiar with the fatigue and flu-like symptoms that can follow a covid jab. But some are more serious: Some people have developed neurological and cardiovascular conditions. 

These problems are rare, according to an evaluation of adverse outcomes in almost 100 million people who received covid vaccines. Most studies of mRNA vaccines haven’t reported an increase in the risk of Guillain-Barré syndrome, a condition that affects nerves and has been linked to covid vaccines.

Covid vaccines can increase the risk of myocarditis and pericarditis in young men. But the picture isn’t straightforward. Vaccinated individuals appear to have double the risk of myocarditis compared with unvaccinated people. But the overall risk is still low. And it’s still not as high as the risk of myocarditis following a covid infection.

And then there are the claims that mRNA vaccines don’t have the support of the public. That’s what Jay Bhattacharya, director of the NIH, wrote in an opinion piece published in the Washington Post on Wednesday.

“No matter how elegant the science, a platform that lacks credibility among the people it seeks to protect cannot fulfill its public health mission,” Bhattacharya wrote. He blamed the Biden administration, which he wrote “did not manage public trust in the coronavirus vaccines.”

It’s an interesting take from someone who played a pretty significant role in undermining public trust in covid policies, including vaccine mandates. In 2020, Bhattacharya coauthored the Great Barrington Declaration—an open letter making the case against lockdowns. He became a vocal critic of US health agencies, including the NIH, and their handling of the outbreak. Unlike Kennedy, Bhattacharya hasn’t called the vaccines unsafe or ineffective. But he has called vaccine mandates “unethical.”

Curiously, the US government doesn’t seem to be turning away from all vaccine research. Just work on mRNA vaccines. Some of the funding budget originally earmarked for covid vaccines will be redirected to two senior staffers at the NIH who are exploring the use of an old vaccine technology that makes use of inactivated viruses—a move that researchers are describing as “troubling” and “appalling,” according to reporting by Science.

Not all mRNA research is being abandoned, either. Bhattacharya has expressed his support for research into the use of mRNA-based treatments for cancer. Such “vaccine therapeutics” were being explored before covid came along. (Notably, Bhattacharya isn’t referring to them as “vaccines.”)

It is difficult to predict how this will all shake out for mRNA vaccines. We mustn’t forget that this technology helped save millions of lives and shows huge promise for the development of cheap, effective, and potentially universal vaccines. Let’s hope that the recent upsets won’t prevent it from achieving its potential.

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

How decades-old frozen embryos are changing the shape of families

This week we welcomed a record-breaking baby to the world. Thaddeus Daniel Pierce, who arrived over the weekend, developed from an embryo that was frozen in storage for 30 and a half years. You could call him the world’s oldest baby.

His parents, Lindsey and Tim Pierce, were themselves only young children when that embryo was created, all the way back in 1994. Linda Archerd, who donated the embryo, described the experience as “surreal.”

Stories like this also highlight how reproductive technologies are shaping families. Thaddeus already has a 30-year-old sister and a 10-year-old niece. Lindsey and Tim are his birth parents, but his genes came from two other people who divorced decades ago.

And while baby Thaddeus is a record-breaker, plenty of other babies have been born from embryos that have been frozen for significant spells of time.

Thaddeus has taken the title of “world’s oldest baby” from the previous record-holders: twins Lydia Ann and Timothy Ronald Ridgeway, born in 2022, who developed from embryos that were created 30 years earlier, in 1992. Before that, the title was held by Molly Gibson, who developed from an embryo that was in storage for 27 years.

These remarkable stories suggest there may be no limit to how long embryos can be stored. Even after more than 30 years of being frozen at -196 °C (-321 °F), these tiny cells can be reanimated and develop into healthy babies. (Proponents of cryogenics can only dream of achieving anything like this with grown people.)

These stories also serve as a reminder that thanks to advances in cryopreservation and the ever-increasing popularity of IVF, a growing number of embryos are being stored in tanks. No one knows for sure how many there are, but there are millions of them.

Not all of them will be used in IVF. There are plenty of reasons why someone who created embryos might never use them. Archerd says that while she had always planned to use all four of the embryos she created with her then husband, he didn’t want a bigger family. Some couples create embryos and then separate. Some people “age out” of being able to use their embryos themselves—many clinics refuse to transfer an embryo to people in their late 40s or older.

What then? In most cases, people who have embryos they won’t use can choose to donate them, either to potential parents or for research, or discard them. Donation to other parents tends to be the least popular option. (In some countries, none of those options are available, and unused embryos end up in a strange limbo—you can read more about that here.)

But some people, like Archerd, do donate their embryos. The recipients of those embryos will be the legal parents of the resulting children, but they won’t share a genetic link. The children might not ever meet their genetic “parents.” (Archerd is, however, very keen to meet Thaddeus.)

Some people might have donated their embryos anonymously. But anonymity can never be guaranteed. Nowadays, consumer genetic tests allow anyone to search for family members—even if the people they track down thought they were making an anonymous donation 20 years ago, before these tests even existed.

These kinds of tests have already resulted in surprise revelations that have disrupted families. People who discover that they were conceived using a donated egg or sperm can find multiple long-lost siblings. One man who spoke at a major reproduction conference in 2024 said that since taking a DNA test, he had found he had 50 of them. 

The general advice now is for parents to let their children know how they were conceived relatively early on.

When I shared the story of baby Thaddeus on social media, a couple of people commented that they had concerns for the child. One person mentioned the age gap between Thaddeus and his 30-year-old sister. That person added that being donor conceived “isn’t easy.”

For the record, that is not what researchers find when they evaluate donor-conceived children and their families. Studies find that embryo donation doesn’t affect parents’ attachment to a child or their parenting style. And donor-conceived children tend to be psychosocially well adjusted.

Families come in all shapes and sizes. Reproductive technologies are extending the range of those shapes and sizes.

This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.

Exclusive: A record-breaking baby has been born from an embryo that’s over 30 years old

A baby boy born over the weekend holds the new record for the “oldest baby.” Thaddeus Daniel Pierce, who arrived on July 26, developed from an embryo that had been in storage for 30 and a half years.

“We had a rough birth but we are both doing well now,” says Lindsey Pierce, his mother. “He is so chill. We are in awe that we have this precious baby!”

Lindsey and her husband, Tim Pierce, who live in London, Ohio, “adopted” the embryo from a woman who had it created in 1994. She says her family and church family think “it’s like something from a sci-fi movie.” 

“The baby has a 30-year-old sister,” she adds. Tim was a toddler when the embryos were first created.

“It’s been pretty surreal,” says Linda Archerd, 62, who donated the embryo. “It’s hard to even believe.”

Three little hopes

The story starts back in the early 1990s. Archerd had been trying—and failing—to get pregnant for six years. She and her husband decided to try IVF, a fairly new technology at the time. “People were [unfamiliar] with it,” says Archerd. “A lot of people were like, what are you doing?”

They did it anyway, and in May 1994, they managed to create four embryos. One of them was transferred to Linda’s uterus. It resulted in a healthy baby girl. “I was so blessed to have a baby,” Archerd says. The remaining three embryos were cryopreserved and kept in a storage tank.

That was 31 years ago. The healthy baby girl is now a 30-year-old woman who has her own 10-year-old daughter. But the other three embryos remained frozen in time.

Archerd originally planned to use the embryos herself. “I always wanted another baby desperately,” she says. “I called them my three little hopes.” Her then husband felt differently, she says. Archerd went on to divorce him, but she won custody of the embryos and kept them in storage, still hopeful she might use them one day, perhaps with another partner.

That meant paying annual storage fees, which increased over time and ended up costing Archerd around a thousand dollars a year, she says. To her, it was worth it. “I always thought it was the right thing to do,” she says. 

Things changed when she started going through menopause, she says. She considered her options. She didn’t want to discard the embryos or donate them for research. And she didn’t want to donate them to another family anonymously—she wanted to meet the parents and any resulting babies. “It’s my DNA; it came from me … and [it’s] my daughter’s sibling,” she says.

Then she found out about embryo “adoption.” This is a type of embryo donation in which both donors and recipients have a say in whom they “place” their embryos with or “adopt” them from. It is overseen by agencies—usually explicitly religious ones—that believe an embryo is morally equivalent to a born human. Archerd is Christian.

There are several agencies that offer these adoption services in the US, but not all of them accept embryos that have been stored for a very long time. That’s partly because those embryos will have been frozen and stored in unfamiliar, old-fashioned ways, and partly because old embryos are thought to be less likely to survive thawing and transfer to successfully develop into a baby.

“So many places wouldn’t even take my information,” says Archerd. Then she came across the Snowflakes program run by the Nightlight Christian Adoptions agency. The agency was willing to accept her embryos, but it needed Archerd’s medical records from the time the embryos had been created, as well as the embryos’ lab records.

So Archerd called the fertility doctor who had treated her decades before. “I still remembered his phone number by heart,” she says. That doctor, now in his 70s, is still practicing at a clinic in Oregon. He dug Archerd’s records out from his basement, she says. “Some of [them] were handwritten,” she adds. Her embryos entered Nightlight’s “matching pool” in 2022.

Making a match

“Our matching process is really driven by the preferences of the placing family,” says Beth Button, executive director of the Snowflakes program. Archerd’s preference was for a married Caucasian, Christian couple living in the US. “I didn’t want them to go out of the country,” says Archerd. “And being Christian is very important to me, because I am.”

It took a while to find a match. Most of the “adopting parents” signed up for the Snowflakes program were already registered at fertility clinics that wouldn’t have accepted the embryos, says Button. “I would say that over 90% of clinics in the US would not have accepted these embryos,” she says.

Expecting parents Tim and Lindsey Pierce.
Lindsey and Tim Pierce at Rejoice Fertility.
COURTESY LINDSEY PIERCE

Archerd’s embryos were assigned to the agency’s Open Hearts program for embryos that are “hard to place,” along with others that have been in storage for a long time or are otherwise thought to be less likely to result in a healthy birth.

Lindsey and Tim Pierce had also signed up for the Open Hearts program. The couple, aged 35 and 34, respectively, had been trying for a baby for seven years and had seen multiple doctors.

Lindsey was researching child adoption when she came across the Snowflakes program. 

When the couple were considering their criteria for embryos they might receive, they decided that they’d be open to any. “We checkmarked anything and everything,” says Tim. That’s how they ended up being matched with Archerd’s embryos. “We thought it was wild,” says Lindsey. “We didn’t know they froze embryos that long ago.”

Lindsey and Tim had registered with Rejoice Fertility, an IVF clinic in Knoxville, Tennessee, run by John Gordon, a reproductive endocrinologist who prides himself on his efforts to reduce the number of embryos in storage. The huge numbers of embryos left in storage tanks was weighing on his conscience, he says, so around six years ago, he set up Rejoice Fertility with the aim of doing things differently.  

“Now we’re here in the belt buckle of the Bible Belt,” says Gordon, who is Reformed Presbyterian. “I’ve changed my mode of practice.” IVF treatments performed at the clinic are designed to create as few excess embryos as possible. The clinic works with multiple embryo adoption agencies and will accept any embryo, no matter how long it has been in storage.

A portrait of Linda Archerd.

COURTESY LINDA ARCHERD

It was his clinic that treated the parents who previously held the record for the longest-stored embryo—in 2022, Rachel and Philip Ridgeway had twins from embryos created more than 30 years earlier. “They’re such a lovely couple,” says Gordon. When we spoke, he was making plans to meet the family for breakfast. The twins are “growing like weeds,” he says with a laugh.

“We have certain guiding principles, and they’re coming from our faith,” says Gordon, although he adds that he sees patients who hold alternative views. One of those principles is that “every embryo deserves a chance at life and that the only embryo that cannot result in a healthy baby is the embryo not given the opportunity to be transferred into a patient.”

That’s why his team will endeavor to transfer any embryo they receive, no matter the age or conditions. That can be challenging, especially when the embryos have been frozen or stored in unusual or outdated ways. “It’s scary for people who don’t know how to do it,” says Sarah Atkinson, lab supervisor and head embryologist at Rejoice Fertility. “You don’t want to kill someone’s embryos if you don’t know what you’re doing.”

Cumbersome and explosive

In the early days of IVF, embryos earmarked for storage were slow-frozen. This technique involves gradually lowering the temperature of the embryos. But because slow freezing can cause harmful ice crystals to form, clinics switched in the 2000s to a technique called vitrification, in which the embryos are placed in thin plastic tubes called straws and lowered into tanks of liquid nitrogen. This rapidly freezes the embryos and converts them into a glass-like state. 

The embryos can later be thawed by removing them from the tanks and rapidly—within two seconds—plunging them into warm “thaw media,” says Atkinson. Thawing slow-frozen embryos is more complicated. And the exact thawing method required varies, depending on how the embryos were preserved and what they were stored in. Some of the devices need to be opened while they are inside the storage tank, which can involve using forceps, diamond-bladed knives, and other tools in the liquid nitrogen, says Atkinson.

Sarah Atkinson, lab supervisor and head embryologist at Rejoice Fertility, directly injects sperm into two eggs to fertilize them.
COURTESY OF SARAH ATKINSON AT REJOICE FERTILITY.

Recently, she was tasked with retrieving embryos that had been stored inside a glass vial. The vial was made from blown glass and had been heat-sealed with the embryo inside. Atkinson had to use her diamond-bladed knife to snap open the seal inside the nitrogen tank. It was fiddly work, and when the device snapped, a small shard of glass flew out and hit Atkinson’s face. “Hit me on the cheek, cut my cheek, blood running down my face, and I’m like, Oh shit,” she says. Luckily, she had her safety goggles on. And the embryos survived, she adds.

The two embryos that were transferred to Lindsey Pierce.

Atkinson has a folder in her office with notes she’s collected on various devices over the years. She flicks through it over a video call and points to the notes she made about the glass vial. “Might explode; wear face shield and eye protection,” she reads. A few pages later, she points to another embryo-storage device. “You have to thaw this one in your fingers,” she tells me. “I don’t like it.”

The record-breaking embryos had been slow-frozen and stored in a plastic vial, says Atkinson. Thawing them was a cumbersome process. But all three embryos survived it.

The Pierces had to travel from their home in Ohio to the clinic in Tennessee five times over a two-week period. “It was like a five-hour drive,” says Lindsey. One of the three embryos stopped growing. The other two were transferred to Lindsey’s uterus on November 14, she says. And one developed into a fetus.

Now that the baby has arrived, Archerd is keen to meet him. “The first thing that I noticed when Lindsey sent me his pictures is how much he looks like my daughter when she was a baby,” she says. “I pulled out my baby book and compared them side by side, and there is no doubt that they are siblings.”

She doesn’t yet have plans to meet the baby, but doing so would be “a dream come true,” she says. “I wish that they didn’t live so far away from me … He is perfect!”

“We didn’t go into it thinking we would break any records,” says Lindsey. “We just wanted to have a baby.”

The deadly saga of the controversial gene therapy Elevidys

It has been a grim few months for the Duchenne muscular dystrophy (DMD) community. There had been some excitement when, a couple of years ago, a gene therapy for the disorder was approved by the US Food and Drug Administration for the first time. That drug, Elevidys, has now been implicated in the deaths of two teenage boys.

The drug’s approval was always controversial—there was a lack of evidence that it actually worked, for starters. But the agency that once rubber-stamped the drug has now turned on its manufacturer, Sarepta Therapeutics. In a remarkable chain of events, the FDA asked the company to stop shipping the drug on July 18. Sarepta refused to comply.

In the days since, the company has acquiesced. But its reputation has already been hit. And the events have dealt a devastating blow to people desperate for treatments that might help them, their children, or other family members with DMD.

DMD is a rare genetic disorder that causes muscles to degenerate over time. It’s caused by a mutation in a gene that codes for a protein called dystrophin. That protein is essential for muscles—without it, muscles weaken and waste away. The disease mostly affects boys, and symptoms usually start in early childhood.

At first, affected children usually start to find it hard to jump or climb stairs. But as the disease progresses, other movements become difficult too. Eventually, the condition might affect the heart and lungs. The life expectancy of a person with DMD has recently improved, but it is still only around 30 or 40 years. There is no cure. It’s a devastating diagnosis.

Elevidys was designed to replace missing dystrophin with a shortened, engineered version of the protein. In June 2023, the FDA approved the therapy for eligible four- and five-year-olds. It came with a $3.2 million price tag.

The approval was celebrated by people affected by DMD, says Debra Miller, founder of CureDuchenne, an organization that funds research into the condition and offers support to those affected by it. “We’ve not had much in the way of meaningful therapies,” she says. “The excitement was great.”

But the approval was controversial. It came under an “accelerated approval” program that essentially lowers the bar of evidence for drugs designed to treat “serious or life-threatening diseases where there is an unmet medical need.”

Elevidys was approved because it appeared to increase levels of the engineered protein in patients’ muscles. But it had not been shown to improve patient outcomes: It had failed a randomized clinical trial.

The FDA approval was granted on the condition that Sarepta complete another clinical trial. The topline results of that trial were described in October 2023 and were published in detail a year later. Again, the drug failed to meet its “primary endpoint”—in other words, it didn’t work as well as hoped.

In June 2024, the FDA expanded the approval of Elevidys. It granted traditional approval for the drug to treat people with DMD who are over the age of four and can walk independently, and another accelerated approval for those who can’t.

Some experts were appalled at the FDA’s decision—even some within the FDA disagreed with it. But things weren’t so simple for people living with DMD. I spoke to some parents of such children a couple of years ago. They pointed out that drug approvals can help bring interest and investment to DMD research. And, above all, they were desperate for any drug that might help their children. They were desperate for hope.

Unfortunately, the treatment does not appear to be delivering on that hope. There have always been questions over whether it works. But now there are serious questions over how safe it is. 

In March 2025, a 16-year-old boy died after being treated with Elevidys. He had developed acute liver failure (ALF) after having the treatment, Sarepta said in a statement. On June 15, the company announced a second death—a 15-year-old who also developed ALF following Elevidys treatment. The company said it would pause shipments of the drug, but only for patients who are not able to walk.

The following day, Sarepta held an online presentation in which CEO Doug Ingram said that the company was exploring ways to make the treatment safer, perhaps by treating recipients with another drug that dampens their immune systems. But that same day, the company announced that it was laying off 500 employees—36% of its workforce. Sarepta did not respond to a request for comment.

On June 24, the FDA announced that it was investigating the risks of serious outcomes “including hospitalization and death” associated with Elevidys, and “evaluating the need for further regulatory action.”

There was more tragic news on July 18, when there were reports that a third patient had died following a Sarepta treatment. This patient, a 51-year-old, hadn’t been taking Elevidys but was enrolled in a clinical trial for a different Sarepta gene therapy designed to treat limb-girdle muscular dystrophy. The same day, the FDA asked Sarepta to voluntarily pause all shipments of Elevidys. Sarepta refused to do so.

The refusal was surprising, says Michael Kelly, chief scientific officer at CureDuchenne: “It was an unusual step to take.”

After significant media coverage, including reporting that the FDA was “deeply troubled” by the decision and would use its “full regulatory authority,” Sarepta backed down a few days later. On July 21, the company announced its decision to “voluntarily and temporarily” pause all shipments of Elevidys in the US.

Sarepta says it will now work with the FDA to address safety and labeling concerns. But in the meantime, the saga has left the DMD community grappling with “a mix of disappointment and concern,” says Kelly. Many are worried about the risks of taking the treatment. Others are devastated that they are no longer able to access it.

Miller says she knows of families who have been working with their insurance providers to get authorization for the drug. “It’s like the rug has been pulled out from under them,” she says. Many families have no other treatment options. “And we know what happens when you do nothing with Duchenne,” she says. Others, particularly those with teenage children with DMD, are deciding against trying the drug, she adds.

The decision over whether to take Elevidys was already a personal one based on several factors, he says. People with DMD and their families deserve clear and transparent information about the treatment in order to make that decision.

The FDA’s decision to approve Elevidys was made on limited data, says Kelly. But as things stand today, over 900 people have been treated with Elevidys. “That gives the FDA… an opportunity to look at real data and make informed decisions,” he says.

“Families facing Duchenne do not have time to waste,” Kelly says. “They must navigate a landscape where hope is tempered by the realities of medical complexity.”

A version of this article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.