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Bay Area Startups Want to Make Genetically Engineered Babies. What Could Go Wrong?

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An embryologist performs an embryo cleaning under a microscope in a Petri plate. (Natalia Lebedinskaia/Getty Images)

Airdate: Wednesday, December 3 at 9 AM

In the U.S., it’s illegal to edit genes in human embryos with the intention of creating a genetically engineered baby. But according to the Wall Street Journal, Bay Area startups are focused on just that. It wouldn’t be the first such baby: in 2018, a Chinese scientist announced he had altered embryos to create a baby immune from HIV. He was sentenced to prison for the illegal practice of medicine. In the US and across the globe, ethical concerns about gene editing embryos to eliminate disease and replicate certain traits like a higher IQ are raising alarms. We’ll talk to experts about what is at stake and how innovations in genetic engineering are being directed.

Guests:

Dr. Fyodor Urnov, Professor of Molecular Therapeutics, University of California, Berkeley - Urnov is also the scientific director at its Innovative Genomics Institute (IGI)

Katherine Long, reporter, investigations team, Wall Street Journal - Long's latest piece is titled "Genetically Engineered Babies Are Banned. Tech Titans Are Trying to Make One Anyway"

Katie Hasson, executive director, Center for Genetics and Society

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This partial transcript was computer-generated. While our team has reviewed it, there may be errors.

Grace Won: Welcome to Forum. I’m Grace Won in for Alexis Madrigal. Seven years ago, a Chinese scientist, He Jiankui, announced that he had helped produce genetically engineered babies, eliminating HIV from their embryos. He did not win the Nobel Prize. Instead, he went to jail. In the U.S. and in many other countries, it’s illegal to modify a human embryo with the intention of giving birth to a baby. But according to a Wall Street Journal investigation, that has not stopped a handful of Bay Area startups from trying to genetically engineer embryos.

Joining us to talk about the science and ethics of these endeavors, we’re joined by Dr. Fyodor Urnov, professor of molecular therapeutics at UC Berkeley and scientific director at its Innovative Genomics Institute. Welcome to Forum, Dr. Urnov.

Fyodor Urnov: Good morning. Thank you for having me.

Grace Won: We also have Katie Hasson. She’s the executive director at the Center for Genetics and Society. Welcome, Katie.

Katie Hasson: Good morning.

Grace Won: And we have Katherine Long, a reporter on the investigations team at The Wall Street Journal. She co-wrote the piece “Genetically Engineered Babies Are Banned — Tech Titans Are Trying to Make One Anyway.” Welcome, Katherine.

Katherine Long: So happy to be here. Thanks.

Grace Won: Well, Katherine, I wanted to start with you. Your piece looks at the work of a handful of Bay Area startups, one of which is called Preventive. Who’s behind that company, and what is it trying to accomplish?

Katherine Long: Our reporting found that about six or seven months ago, a company called Preventive incorporated in a downtown San Francisco WeWork, and it’s aiming to tackle a problem that has terrified and exhilarated scientists in equal measure for decades — editing embryos to create a genetically engineered baby.

Our reporting found that it’s backed by Sam Altman’s family office and Coinbase co-founder Brian Armstrong. In private, executives of the company have said that they’ve identified a couple with a genetic disease who’s interested in participating. Now, the company’s founder, Lucas Harrington, has said that’s inaccurate and that the company is not going to bring a baby to term until they’ve done enough preclinical research to show that the technology is safe.

Grace Won: Is the desire of Preventive to create a genetically engineered baby that’s free of disease, or are there other aspects they’re interested in?

Katherine Long: Preventive has said that it’s solely focused on preventing hereditary disease. And in a blog post on his personal website last year, Preventive’s founder Harrington brought up the example of sickle cell disease and said that he believes embryo editing could one day be as low-priced as maybe two thousand or five thousand dollars per cycle.

Grace Won: The practice of editing human embryos to create a baby, as we’ve mentioned, is illegal in the U.S. How is Preventive getting around that?

Katherine Long: Our reporting shows that Preventive is exploring other jurisdictions in which to conduct this research — possibly the United Arab Emirates, where embryo editing is legal.

Grace Won: And how would that work exactly? They would do all the research in a foreign country but have clients in the United States? Walk us through that.

Katherine Long: That’s a great question, and it’s something we weren’t able to uncover. It’s something we’re interested in continuing to follow.

Grace Won: We should note that we invited Preventive to join our program, but they declined. And, Dr. Urnov, I want to turn to you. You’ve been on the leading edge of human genome editing in embryos. Is it scientifically feasible to edit an embryo in the way Preventive is talking about?

Fyodor Urnov: Unfortunately, it is.

Grace Won: And how does it work?

Fyodor Urnov: Jennifer Doudna, professor at UC Berkeley, won the Nobel Prize for inventing a method of gene editing — a layperson’s term for it is CRISPR. The technology is well understood. It’s been used clinically over the past seven years. There is an approved medicine to treat sickle cell disease in existing adolescents and adults.

If you want to make a CRISPR to fix a mutation in a human cell — whether it’s inside an adult or a child or in a human embryo — we know how to do that.

In adults or children, you have various ways of getting the CRISPR into the body. You can inject it intravenously, or you can take some cells out, fix them, and put them back in.

Embryo editing is very different. You rely on established in vitro fertilization technologies. You generate a human embryo — which does not look at all like a human, let’s be clear; it’s a very small, beautiful little thing, but not yet a human baby — and then you inject CRISPR directly into it. And then you hold your breath — close your eyes — hide behind closed doors — in the hope that CRISPR will do its thing.

And then, presumably, that embryo gets delivered to a mother, and she gives birth to this improved baby.

As you can tell from the hesitance in my voice, this is absolutely beyond the pale ethically and clinically. For me to say it’s scientifically feasible — I want to be clear — I say this with zero joy and one hundred percent dread.

Grace Won: Tell me about that dread. These companies say they could eliminate disease — that sounds like a good thing. So where does the dread come in?

Fyodor Urnov: I’m glad you asked. I was thinking of an analogy. Imagine you wanted a poem about hope. Emily Dickinson might write, “ ‘Hope’ is the thing with feathers … ” Or you could ask ChatGPT or Gemini to write you a poem.

The process behind those two poems — one written by a human, one generated by enormous technological infrastructure — is completely different. And here, that difference matters.

We’ve known about genetic diseases since the early 1900s. We understood their molecular basis starting in the 1950s. In the 1970s, scientists said, “Let’s use DNA to fix genetic diseases.” The first attempts were in the late ’80s; the first successes in the ’90s. And in 2012, CRISPR arrived — and now we have clinical trials.

We now know how to treat an existing child or adult. Kyle Muldoon Jr., for example, was treated earlier this year with a personalized CRISPR that fixed his disease. Victoria Gray, an adult with sickle cell disease, had her stem cells edited and re-infused and is now living a full, symptom-free life.

Now imagine a couple at genetic risk of having a child with a disease. What do you do? Maybe edit the baby? No.

We already have two extremely effective approaches:

— carrier screening
— IVF with embryo selection

If each parent carries a disease allele, there’s a one-in-four chance of an affected child. Fertilize four embryos. Choose the one without the mutation. Implant that one.

Safe. Effective. Well established. No embryo editing needed.

Grace Won: We’re talking about these companies saying, “We’re going to prevent disease.” But Katherine, in your piece, it’s not just diseases they’re looking at. It’s traits they want to promote. What traits are people being told their future baby might have?

Katherine Long: In our article, we describe two kinds of companies: embryo-editing companies and polygenic-screening companies.

Polygenic screening is a form of pre-implantation testing — Dr. Urnov referred to this — that can determine whether an embryo may carry a specific disease.

For embryo-editing companies like Preventive — as we’ve said, they claim to focus on disease. That said, investor Brian Armstrong has privately talked about a future in which IVF clinics use a “Gattaca stack” of technologies to optimize human development — for example, increasing bone density.

Turning to polygenic-screening companies — firms like Nucleus Genomics, Orchid Health, and Parasite — some have unveiled tests they say can give insight into an embryo’s future IQ, height, or even eye color.

Grace Won: Wow.

We’re talking about efforts to create a genetically engineered baby by modifying its embryo. What could go wrong? We’re joined by Dr. Fyodor Urnov, Katie Hasson, and Katherine Long. More after the break.

I’m Grace Won in for Alexis Madrigal. Stay tuned.

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