Genetically Engineered Babies Are Banned. Tech Titans Trying to Make One Anyway.

For months, a small company in San Francisco has been pursuing a secretive project: the birth of a genetically engineered baby.

Backed by OpenAI chief executive Sam Altman and his husband, along with Coinbase co-founder and CEO Brian Armstrong, the startup—called Preventive—has been quietly preparing what would amount to a biological first. They are working toward creating a child born from an embryo edited to prevent a hereditary disease. In recent months, executives at the company privately said a couple with a genetic disease had been identified who was interested in participating, according to people familiar with the conversations.

Gene-editing technologies now in use for treatment after birth allow scientists to cut, edit and insert DNA, but using the process in sperm, eggs or embryos is far more controversial and has prompted calls by scientists for a global moratorium until the ethical and scientific questions get resolved. Editing genes in embryos with the intention of creating babies from them is banned in the U.S. and many countries.

Preventive has been searching for places to experiment where embryo editing is allowed, including the United Arab Emirates, according to correspondence reviewed by The Wall Street Journal.

Many experts worry that the science is too unpredictable to be safe and could usher in a new era of human experimentation by private companies without public or government input or debate. Some also raise the specter of eugenics.

There is only one known instance of children being born from edited embryos. In 2018, Chinese scientist He Jiankui shocked the world with news that he had produced three children genetically altered as embryos to be immune to HIV. He was sentenced to prison in China for three years for the illegal practice of medicine. He hasn't publicly shared the children's identities but says they are healthy.

Preventive is in the vanguard of a growing number of startups, funded by some of the most powerful people in Silicon Valley, that are pushing the boundaries of fertility and working to commercialize reproductive genetic technologies. Some are working on embryo editing, while others are already selling genetic screening tools that seek to account for the influence of dozens or hundreds of genes on a trait.

They say their ultimate goal is to produce babies who are free of genetic disease and resilient against illnesses.

Some say they can also give parents the ability to choose embryos that will have higher IQs and preferred traits such as height and eye color.

Armstrong, the cryptocurrency billionaire, is leading the charge to make embryo editing a reality. He has told people that gene-editing technology could produce children who are less prone to heart disease, with lower cholesterol and stronger bones to prevent osteoporosis. According to documents and people briefed on his plans, he is already an investor or in talks with embryo editing ventures.

He has held occasional private dinners to gather Silicon Valley elite alongside gene-editing experts.

One plan Armstrong floated, according to people he has talked to, was for a venture to work in secret and reveal a healthy genetically engineered baby before the scientific and medical establishment had a chance to object—a leap meant to shock the world into acceptance.

A spokeswoman for Armstrong said he had mentioned the idea of working in secret, saying it was someone else's idea, and said he and others present agreed it was a bad idea. “He would never recommend Preventive operate this way,” she said.

Preventive, which incorporated in May with headquarters at a WeWork in San Francisco, worked with a small staff, keeping its plans quiet for nearly six months. Like many startups, at least one employee signed an NDA, the company didn't openly solicit job applicants and kept its website bare of details.

After the Journal approached people close to the company last month to ask about its work, Preventive announced on its website that it had raised $30 million in investment to explore embryo editing. The statement pledged not to advance to human trials “if safety cannot be established through extensive research.”

Lucas Harrington, Preventive's CEO, said it was “completely false” that the company had identified or was working with a couple on editing their embryos. He said the company is focused on research to prove the safety of embryo editing before attempting to actually bring a baby to term. “We are not trying to rush things,” he said.

Harrington added that Preventive is compelled to work outside the U.S. because the Food and Drug Administration is prohibited from reviewing applications for human trials involving embryo editing.

“We are committed to transparency in our research and will publish our findings, whether positive or negative, before considering any potential clinical trials,” he said. Secrecy, he said, “is completely contrary to how we are approaching this research.”

After the Journal requested comment from Armstrong and his representatives, he posted on X that he is “excited to be an investor in Preventive!”

“More than 300 million people globally live with genetic disease,” he wrote. “It is far easier to correct a smaller number of cells before disease progression occurs, such as in an embryo.”

Altman's husband, Oliver Mulherin, said in a statement he is driving the couple's investment in Preventive. “I chose to invest in Preventive because I care about research that helps people avoid disease,” Mulherin said. “Sam is supportive, as he is with all of my work, and of the cause.”

The size of Altman and Mulherin's and Armstrong's investments in Preventive couldn't be determined.

Some in the scientific community are skeptical of the company's plans and goals.

“These people are not working on genetic diseases,” said Fyodor Urnov, a director at the Innovative Genomics Institute at the University of California, Berkeley. “They are either lying, delusional, or both. These people armed with very poorly deployed sacks of cash are working on ‘baby improvement.'”

Scientists say they still don't understand everything about the human genome or how different genes interact with each other. Any edits, changes or deletions of an embryo's genes could be passed down to future generations, including unintended mistakes.

In April, Armstrong on X said he envisioned “the IVF clinic of the future” powered by a “Gattaca stack” of technologies—a reference to the 1997 movie depicting a dystopian eugenic future—combining embryo editing and genetic screening.

Together, he wrote, the technologies could “start to accelerate evolution.”

Separately from embryo editing, startups are vastly expanding the power of genetic screening technology.

Some genetic tests for embryos, for sex and diseases such as cystic fibrosis and Tay Sachs, have long been available to parents who undergo IVF. Some parents choose which embryos to implant on the basis of those tests, deciding between freezing, discarding or donating the embryos they don't use.

Now, some startups are focusing on a process called polygenic screening, which involves extracting DNA from an embryo, analyzing it with statistical algorithms and generating probabilities for a much wider array of characteristics and diseases the child might have.

A handful are already selling these services, backed by investors such as Armstrong, venture capitalist Peter Thiel and Reddit co-founder and venture capitalist Alexis Ohanian.

Orchid and Genomic Prediction give probabilities for disease risk, while Herasight and Nucleus Genomics say they can also give insight into a child's likely intelligence, height and other traits.

Parents can log on to portals to view multicolored charts and graphs showing how their embryos stack up genetically across different diseases and traits. For example, various tests might show an embryo projected to have an IQ of 130, or an embryo with a 1.5% chance of developing schizophrenia, or an embryo 14% more likely than its siblings to suffer from anxiety. Similar probability scores are available for ADHD, bipolar disorder, diabetes or even male-pattern baldness.

The companies have said these are laboratory-developed tests that aren't subject to FDA regulation.

The American College of Medical Genetics and Genomics, a professional organization for geneticists and genetic counselors, concluded last year that polygenic screening offers no proven clinical benefit. It isn't yet fully understood whether disease risks suggested for embryos during polygenic screening hold true into adulthood, the medical society said. Marketing unproven promises of vague optimization, University of Virginia behavioral geneticist Eric Turkheimer said, is “corporate eugenics.”

“The tech people control so much of their lives it's like, ‘Why shouldn't I have the perfect child?'” said Dr. Marcelle Cedars, the lead physician at the University of California, San Francisco's IVF clinic. “But children, they come hardwired, and I don't think you can predict that.”

The four polygenic screening companies said their methodologies are valid and that the tests offer valuable insight into a child's future health and characteristics. Some of them said many critics don't adequately understand the underlying science and that their clients were primarily focused on disease reduction.

“It's not about genetic superiority, it's about disease risk mitigation. Children who make it to adulthood without life-threatening diseases are genetically lucky,” said an Orchid spokeswoman.

Orchid founder Noor Siddiqui, 31, counts Armstrong, Ethereum co-creator Vitalik Buterin and 23andMe co-founder and CEO Anne Wojcicki as investors. Orchid charges $2,500 per embryo to run a slate of genetic tests and produce a “risk score” for diseases including Alzheimer's, bipolar disorder and schizophrenia.

Nucleus founder Kian Sadeghi, along with Siddiqui, is a former Thiel Fellow, a grant and mentorship program for college dropouts. He has described polygenic screening as “genetic optimization software” and talked of it as part of a “neo-evolution,” a term he defined in a now-deleted post on X as “genetically engineering ourselves at scale.”

“The genetic-optimization industry is already here: technologies from embryo selection to gene-editing research are expanding what parents can understand—and choose—for their future children,” Sadeghi said in a statement to the Journal.

Nucleus, which has raised $32 million, is backed by venture-capital firms founded by Thiel and Ohanian and charges $9,999 to provide polygenic screening on up to 20 embryos.

Siddiqui and Sadeghi, 25, both imagine a world in which more couples create embryos through IVF, enabling them to select genetically preferred embryos. “Sex is for fun,” Siddiqui has said. “Embryo screening is for babies.”

Preventive and some other startups aim to go further, hoping to offer a technology to actually change the genetic code of embryos and produce a baby parents prefer.

Currently, cutting-edge gene-editing treatments are available for adults and children, including a breakthrough technology called Crispr that has been used to make changes in genetic code that causes diseases. Doctors reported this spring that an infant was successfully treated with a customized Crispr therapy for a rare and deadly metabolic disease.

Preventive and other companies are now proposing to take gene editing to the embryo stage.

Other embryo editing startups are Manhattan Genomics, co-founded by Thiel Fellow Cathy Tie, and Bootstrap Bio, which plans to conduct tests in Honduras. Both companies are in early stages.

Harrington, 34, said Preventive's current focus is on preclinical research. Preventive's launch statement said it is focused on “preventing severe genetic diseases where families have limited or no alternatives.”

Harrington said the company may conduct some work outside of the U.S. He added he hoped Congress would reconsider restrictions on embryo editing.

Two prominent research labs that study genetics and embryos are expected to announce breakthroughs in coming months, including the lab of Columbia University's Dieter Egli, with whom Armstrong has held talks about commercializing embryo editing.

In an email, Egli said his research is broadly relevant to gene-editing safety, though he said there are no “direct commercial applications” of his forthcoming work.

Despite the advancements, gene editing still carries the risk of inadvertently inserting or deleting snippets of DNA.

“Responsible adults agree we can't do it now because it's unreasonably unsafe,” said Stanford University bioethicist Hank Greely. “The risk-benefit ratio sucks at this point.”

“We believe as a business that embryonic selection, genetic optimization, is not for the few, but for everyone,” Sadeghi said at the June launch of Nucleus's polygenic embryo screening product.

Several prominent members of the Silicon Valley elite, including Altman and Elon Musk, have used polygenic screening to evaluate embryos for their children, people briefed on the matter said.

Musk used Orchid to select embryos for two children he had with Shivon Zilis, an executive at his brain-computer interface company Neuralink, one of the people said. Musk, Zilis and their representatives didn't respond to requests for comment.

Parents outside the tech elite have been slower to adopt the polygenic screening technology, clinicians said.

Orchid, which has raised $16.5 million since its launch in 2019, markets its tests in part through the private equity-backed chain of Kindbody fertility clinics. People familiar with the clinics' operations said they have performed only a handful of tests at patients' request. An Orchid spokeswoman said the company has seen “strong and growing interest” in its tests at clinics across the country.

Sadeghi said that Nucleus has served thousands of families, extending “well beyond the walls of Silicon Valley.”

Herasight, which formally launched this summer with backing from influential Silicon Valley venture-capital firm Draper Associates, is charging $50,000 for testing and analysis on up to 100 embryos over the course of five years. Jonathan Anomaly, Herasight's “in-house philosopher,” said the company is exploring offering less expensive alternatives.

Herasight counts “well known billionaires” among its 80 initial customers, according to a May venture capital email to potential investors reviewed by the Journal. The message pitched the company as one that “empowers parents to have children with the best predicted traits,” including IQ, impulsivity, height and risk of developing common diseases.

On a night in September, Anomaly addressed a crowd of roughly 60 people gathered in celebrity economist Nouriel Roubini's Manhattan apartment. Anomaly, who changed his last name as a college student, is a former professor of political science at Duke University.

The event was billed as an upscale salon about the future of designer children, with guests recommended to dress “sexy, hip, original, elegant.”

Anomaly is a vocal defender of voluntary eugenics. Humans, he wrote in 2018, should make reproductive choices that “produce future people who thrive.”

During the event, he displayed an image of a mobile Nazi gas chamber used to kill people with disabilities to make the point that Herasight's aim is “morally a completely different model than the worst form of state-sponsored coercive eugenics.”

Still, Anomaly said, several generations of selecting the most optimal embryos could cause societal changes. In time, he said, there could be a marked difference in intelligence between the “genetically enhanced” and the “genetically unenhanced.”

Some day, Anomaly said, those who choose embryos for higher intelligence might pity those who leave their children unenhanced. “There's going to be inequality,” he said.

In an email, Roubini said that he has “serious doubts and concerns” about polygenic screening, and though he co-hosted the event, he doesn't agree with everything Anomaly said.

Weeks later, Herasight unveiled what it called the most powerful genetic intelligence prediction model on the market. It said in some cases parents could select an embryo with an IQ up to 9 points higher than the others being tested—an increase that a scientist at the company said was correlated with increased income and education and a lower risk of heart disease.

Max Howald, 31, and his wife used Herasight to select one embryo among the five they had created. The embryo they chose “was rated as somewhat lower risk for most diseases, as well as higher for IQ and slightly higher for height,” said Howald, a software engineer at a financial technology startup. The couple is due in February.

Howald learned about polygenic screening from a post on LessWrong, a blog popular in the effective altruism community, which is focused on identifying evidence-based ways to do good.

He and his wife were attracted to the technology in part because it felt like exercising control over their reproductive future, Howald said. Howald is Jewish, and his wife was born in China during that country's one-child policy.

“We're both familiar with what can happen and what has happened, when the state coerces people and restricts fundamental human rights, on a very personal level,” Howald said. “We view the opportunity and choice to do polygenic screening as exercising rights that were unavailable or forcibly denied to many of our ancestors.”

The return on investments in embryo technology remains hazy, even as the U.S. market for IVF is expected to grow from roughly $3.5 billion in 2023 to more than $5 billion in 2028, according to market research from McKinsey.

It's also not yet clear how embryo editing will be commercialized and how many could afford it. The list price for the first FDA-approved personalized gene editing treatment for adults, which treats sickle cell disease, is $2.2 million, although it's unclear what a patient would actually pay.

In a November 2024 post on his personal blog, Preventive's Harrington wrote that embryo editing could eventually cost as little as $2,000. “When amortized across the generations this number becomes vanishingly small,” he wrote. The technology could be especially promising for couples who have the same genetic condition, such as in Nigeria, where many people have sickle cell disease, he wrote.

Harrington told the Journal the example shows that significant numbers of couples globally face difficult choices about biological children and hereditary disease, and he wasn't suggesting a starting point for clinical use.

Altman informally advised Harrington to incorporate Preventive as a public-benefit corporation—which pursues a social good in addition to profit—according to people familiar with the discussions.

Preventive defines its social good as “the responsible advancement of the science and safety of genome editing technologies applied before birth to benefit humanity,” according to its corporate charter. In Delaware, where Preventive is incorporated, public-benefit corporations have additional protections against shareholder lawsuits, a measure Harrington described as enabling such corporations to focus on social good rather than solely on profits.

Harrington earned his doctorate in the lab of Jennifer Doudna, who shared the Nobel Prize in 2020 for her groundbreaking work on Crispr. The two are among co-founders of a company, Mammoth Biosciences, focused on gene-editing therapies.

When asked about the launch of Preventive, Doudna said that Harrington was “bringing rigorous scientific standards and transparency needed to explore whether Crispr technology has matured enough to safely address severe genetic diseases preventively.”

“The field will be watching to see whether the science supports moving forward responsibly,” she said.

Write to Emily Glazer at Emily.Glazer@wsj.com and Katherine Long at katherine.long@wsj.com

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Source: HindustanTimes
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