A billionaire-backed startup is seeking to create banned 'gene-edited babies'



Preventive, a San Francisco-based startup backed by technology billionaires such as OpenAI CEO Sam Altman and Coinbase CEO Brian Armstrong, is working on a secret project to create gene-edited babies, a project that would be prohibited by law, according to a Wall Street Journal report.

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

https://www.wsj.com/tech/biotech/genetically-engineered-babies-tech-billionaires-6779efc8

Preventive has been quietly working on a project that would be a first in biology. Preventive aims to create children from gene-edited embryos to prevent genetic diseases. According to information obtained from a Preventive source, company executives have privately expressed interest in creating gene-edited babies from 'couples with genetic diseases.'

At the time of writing, gene editing is being used for postnatal treatment, allowing scientists to cut, edit, or insert DNA. However, applying gene editing to sperm, eggs, and embryos is far more controversial, and scientists have called for a global moratorium on its use until ethical and scientific issues are resolved. Furthermore, editing the genes of embryos to produce children is prohibited or heavily restricted by law in several countries, including the United States.

According to documents obtained exclusively by The Wall Street Journal, Preventive is seeking to conduct its experiments in countries 'where gene editing of embryos is permitted,' including the United Arab Emirates.



But some experts fear that 'embryo gene editing' is so unpredictable that it could usher in a new era of human experimentation by private companies without public or government input or discussion.

As of the time of writing, there has only been one reported case of a child being born from a gene-edited embryo. In 2018, Chinese scientist

He Jiankui gave birth to twin girls from embryos that had been gene-edited to confer immunity to HIV. He was sentenced to three years in prison for violating Chinese law by creating gene-edited babies. He has not released the identities of the gene-edited babies, but has stated that the children are healthy.

Chinese scientists announce that HIV-resistant twin girls were born through genome editing, raising serious ethical and content questions - GIGAZINE



Preventive is at the forefront of a growing number of startups aiming to commercialize technology for gene-editing babies. Some of these startups work on gene editing in embryos, while others sell genetic screening tools to test the effect of genes on traits.

Preventive says its ultimate goal is to produce babies that are free of genetic diseases and resistant to disease, but some argue that gene-edited babies involve editing embryos to give children superior traits such as higher IQs, taller height, or specific eye colors.

Coinbase CEO Armstrong is one of several billionaires who have been touting embryo gene editing technology. A person familiar with the matter who has been briefed on the embryo gene editing plan by Armstrong testified that Armstrong has been promoting the technology, claiming that 'embryo gene editing can result in babies with reduced heart disease, lower cholesterol levels, and stronger bones that can prevent osteoporosis.'

Armstrong occasionally hosts private dinners for Silicon Valley elites and gene editing experts. According to a person who has heard Armstrong's plans, he has a very bold plan: to announce a gene-edited baby before the scientific and medical communities have a chance to object, and to shock the world into accepting it.



Preventive is raising $30 million to study its embryo gene editing technology. In a statement announcing the funding, the company promised not to proceed with human clinical trials unless safety is established through extensive research.

Preventive CEO Lucas Harrington dismissed allegations that his company is already gene-editing embryos as 'completely false,' adding that the company is focused on research to prove the safety of gene editing before attempting to produce a live birth. 'We're not trying to rush things,' he said.

Harrington also argues that Preventive will have to operate outside the United States because

the U.S. Food and Drug Administration (FDA) prohibits human experimentation, including genetic editing of embryos.

In response to a request for comment from The Wall Street Journal, Armstrong posted on X, 'I'm thrilled to be an investor in Preventive! More than 300 million people worldwide live with genetic diseases, and basic research must be conducted to determine whether safe and effective therapies can be developed to treat these diseases at birth. It is much easier to correct these diseases at a stage when there are only a few cells, such as in the embryo, before disease progression occurs.'




Oliver Mulherin, Altman's partner, noted that he and Altman are investing in Preventive together. 'I chose to invest in Preventive because I'm interested in research that helps people prevent disease,' he told The Wall Street Journal. 'Sam is supportive of all my work and the principles behind my work.'

Meanwhile, Fyodor Urnov, director of the Innovative Genomics Institute at the University of California, Berkeley, criticized Preventive and its associates, saying, 'They're not researching genetic diseases. They're either lying, delusional, or both. They're using a lot of money they have no use for to improve babies.'



In addition to gene editing of embryos, other companies are developing technologies for gene-editing babies. One such technology, called 'polygenic screening,' involves extracting DNA from fertilized eggs and analyzing it with statistical algorithms to calculate the probability of a wider range of traits and diseases that the child may have.

Several companies are already offering multi-gene screening services, and in addition to CEO Armstrong, they are backed by investors such as venture capitalist Peter Thiel and Reddit co-founder Alexi Ohanian.

Orchid and Genomic Prediction, which offer multi-gene screening services, claim to indicate disease risk, while Herasight and Nucleus Genomics claim to offer insights into traits such as a child's intelligence and height. Users can log into a portal and view charts and graphs that display their fetus's genetic profile for various diseases and traits. For example, a test might predict a fetus with an IQ of 130, but also show a 1.5% chance of developing schizophrenia and a 14% higher chance of suffering from anxiety than its siblings. Other potential risks include ADHD, bipolar disorder, diabetes, and male pattern baldness.

This technology is not subject to FDA regulation, so it is being promoted as a technology developed in a US laboratory.

On the other hand, the American Society of Clinical Genetics and Genomics, a professional organization for geneticists and genetic counselors, concluded in 2024 that 'multigenic screening has no proven clinical benefit.' According to the society, it is not yet fully understood whether disease risks suggested in the fetus by multigenic screening persist into adulthood.

In response, four companies—Orchid, Genomic Prediction, Herasight, and Nucleus Genomics—argue that their multi-gene screening is valid and provides valuable insights into a child's future health and traits. Some companies offering multi-gene screening services also point out that many critics do not fully understand the underlying science, and that their customers are primarily focused on disease mitigation.



According to market research by McKinsey & Company, the IVF market in the United States is expected to grow from approximately $3.5 billion in 2023 to more than $5 billion in 2028. However, the return on investment in embryo technology remains unclear.

It's still unclear how embryo gene editing will be commercialized and how many people will have access to it. The first FDA-approved personalized gene editing therapy for adults has a list price of $2.2 million, but it's unclear how much patients will actually pay.

Preventive CEO Harrington wrote in a November 2024 blog post that the cost of embryo gene editing could eventually be as low as $2,000. 'When amortized over generations, this amount becomes negligible,' he said. He noted that this could be particularly promising for couples with the same genetic condition, such as those in Nigeria, where sickle cell disease is prevalent.

Harrington told The Wall Street Journal that the case illustrates the difficult choices many couples around the world face about their children and genetic diseases, and that it doesn't signal a starting point for clinical use.

Harrington earned his PhD in the lab of Jennifer Doudna, who shared the Nobel Prize in 2020 for her groundbreaking research on CRISPR. The two are also co-founders of Mammoth Biosciences , a company specializing in gene-editing therapeutics.

Regarding Preventive, Doudna said, 'It brings the rigorous scientific standards and transparency needed to explore whether CRISPR technology is mature enough to safely treat serious genetic diseases preventatively.'

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