America’s first IVF baby is pitching a way to pick the DNA of your kids

Elizabeth Carr is head of commercial development at Genomic Prediction, a New Jersey genetic testing startup that says it will assess embryos created in IVF clinics for their future chance of common diseases and then rank them, so parents can pick the one with the best future. 

It’s a controversial area that has some critics anguishing over the prospect of consumer eugenics. The American College of Medical Genetics said in March that the tests are “not yet appropriate” for use in medicine, calling them unproven.

Still, word of the company’s “health scores” for embryos is spreading via media reports and as the company starts to promote the tests to IVF clinics and at meetings. 

And Carr, who is in charge of sales and marketing, may just be the perfect spokesperson. That is because she is “America’s first test-tube baby,” as the headlines shouted in 1981, when she became the first person born through in vitro fertilization in the US.

MIT Technology Review spoke to Carr about the tests and her unique background.

How she learned about her birth: “My parents explained it as ‘We couldn’t have had you without some very special doctors and science,” says Carr. One prominent memory is attending a screening of the Nova documentary that captured scenes of her birth. She was seated between Howard and Georgeanna Jones, the IVF pioneers who created her in a Virginia lab. “I had an ongoing commentary from these two scientists, explaining to a six-year-old; ‘Now this is why we did this, and this is why we did this.’”

Career path: Carr first became a health journalist, spending 15 years at the Boston Globe, where she covered the Boston Marathon bombings and the first face transplant. “I had my first press conference when I was three days old,” she says. “I always had reporters asking me questions, and I was like, ‘I could do a better job.’” Later, she moved into ghostwriting and marketing for IVF clinics.

The product: IVF procedures typically generate several embryos in a lab. The company says its genetic tests can help parents pick which has the lowest chance of a dozen common diseases and try to use that one to get pregnant. The tests work by measuring thousands of individual genetic differences, resulting in what’s known as a polygenic score. Testing an embryo costs about $1,000. “This was not even in the realm of possibility when I was born. And so it’s really exciting,” says Carr.

What the tests promise: The company says the tests predict a future person’s chance of heart disease, schizophrenia, and other diseases. “Essentially, using the embryo health score allows the patient along with their clinician to be able to compare overall disease risks among the embryos that they have at their fingertips,” says Carr. “If you are worried about the diabetes risk in your family, you can look at three embryos and say: ‘This one has the lowest risk overall compared to the other two.’”

What makes them think the test works: The company generated prediction scores scores for a large number of real-life siblings. Then they checked to see if the gene statistics helped explain actual differences in their health. “The results lined up,” says Carr. “That is how we validated it.”

Handling controversy:  Embryo scores are still hotly debated, with some geneticists calling them unproven and even unethical. Carr notes that IVF itself once attracted similar concerns. “Not to draw a very, very, obvious conclusion from my own life, but it’s really no different, right?” she says. “If you have moral objections to the test or you don’t agree with it, don’t use it.”

Meeting opposition: Recently, a group of experts writing in Science called on the Federal Trade Commission to scrutinize Genomic Prediction’s advertising, putting Carr’s work in the spotlight. Carr says she hasn’t heard from the agency.  “I think all opposition is based in fear and lack of understanding,” she says. Once people learn how the tests work, “nine times out of 10, they’re like, okay, this isn’t what I thought it was.”

Predicting intelligence? The same types of scores that could handicap someone’s likelihood of developing schizophrenia can also put odds on how tall people will grow up to be, or even how far they will go in school. And it’s picking children’s intelligence that’s the real societal lightning rod. Genomic Prediction doesn’t currently offer an intelligence score. “Theoretically speaking, it’s probably possible,” says Carr. “I just don’t see that happening anytime soon. Maybe eventually, but as far as I know, we have no plans of adding that. To be honest, we’ve got our hands full.”

What will reproduction look like in 40 years? Tough question, says Carr. “I think more and more people will access IVF for new reasons, and genetic testing will be chief among them,” she says. “You Uber a car and you can DoorDash and see when a pizza is going to land. My generation and younger have come to expect more information.”

Downside of being America’s first IVF baby: “There’s no lying about my age for sure, and yes, it is slightly awkward to still be referred to as a baby,” says Carr. “I think I’m just saddled with this awkward title, but that’s okay.”