Elizabeth Carr has an exciting job: she is the director of commercial development at Genomic Prediction, a genetic testing start-up in the US state of New Jersey. It says it can now screen embryos created in in vitro fertilization clinics for their future risk of common diseases. The idea here is that parents should be able to select the healthiest embryo before it is placed in the uterus.
The offer is controversial. Critics see it as a kind of eugenics for consumers. For example, the American College of Medical Genetics said in March that the tests are for medical use “not yet suitable”. and called them unproven. Nevertheless, word of embryo “health assessment” got around in the media, and Genomic Prediction is now beginning to promote the testing in fertility centers and at conferences.
Carr, who also oversees sales and marketing, makes the perfect voice actress here. Because she is a special person: She became famous as “America’s first test-tube baby”. She was born in 1981 as part of an in vitro fertilization (IVF) procedure that had never been performed before in the United States.
“My parents explained it like this: We couldn’t have gotten you without very special doctors and science,” she tells MIT Technology Review. A special memory is the visit to a screening of the documentary series “Nova”, which shows scenes from her birth. She sat between Howard and Georgeanna Jones, the pioneers of IVF who created them in a Virginia lab. “When I was six, the two scientists explained to me, like football commentators, why they were doing this and that,” she laughs.
From newspaper to genetic engineering company
Carr first became a health journalist and worked for the Boston Globe for 15 years, where she covered, among other things, the Boston Marathon bombings and the first-ever face transplant. “I had my first press conference when I was three days old,” she says. “Reporters kept asking me questions afterwards and I thought to myself: I can do better than that.” She later transitioned into ghostwriting and marketing for IVF clinics.
In IVF procedures, several embryos are usually created in the laboratory. Genomic Prediction now claims its genetic testing can help parents pinpoint the embryo least likely to contract a dozen common diseases. It should then preferably be inserted into the uterus so that pregnancy can occur. The tests check for thousands of individual genetic differences, resulting in what is known as a polygenic score. Testing costs about $1,000 per embryo. “When I was born, that wasn’t even in the realm of possibility, so it’s really exciting,” says Carr.
The startup claims the tests can predict a person’s risk of heart disease, schizophrenia and other diseases. “The Embryo Health Score allows parents and the doctor to compare the overall disease risk of the embryos available to them,” explains Carr. “If you’re concerned about the risk of diabetes in your family, you can look at three embryos and say, ‘This one has the lowest overall risk compared to the other two.’
The start-up created predictive values for a large number of real-life siblings. Then they checked whether their genetic statistics helped explain the actual differences in health status. “The results were consistent,” says Carr. “That’s how we validated that.”
A scoring of intelligence?
Such embryo scores continue to be the subject of controversy. Some geneticists call them unproven and even unethical. Carr points out that IVF itself once raised similar concerns. “I don’t want to draw a very, very obvious conclusion from my own life here, but it’s really no different,” she says. Anyone who has moral concerns about the test or rejects it should not have it carried out.
But there is scientific resistance. Recently, in the journal Science, a group of genetic experts the US Federal Trade Commission to review advertisements by Genomic Prediction, putting Carr’s work in the spotlight. Carr says no one has heard from the agency yet. “I believe this resistance is based on fear and a lack of understanding,” she says. Once people figured out how the tests worked, nine times out of ten they would say they were very different from what they thought.
The same kind of scoring that determines the likelihood of developing schizophrenia can also tell how tall someone is getting or how far they are doing in school. But the area of intelligence is the actual social lightning rod. Genomic Prediction does not currently offer scoring for this. “In theory, it’s probably possible,” says Carr. “I just don’t think that’s going to happen anytime soon. Maybe someday.” There are no plans for this. “To be honest, we have our hands full.”
What will reproduction look like in 40 years? A difficult question, says Carr. “I think that more and more people will take up IVF for completely new reasons – and genetic testing will play an important role in this,” she says. “Today there are driving service apps like Uber and delivery apps that show you when the pizza is coming. My generation and younger people simply expect more data.” Meanwhile, Carr already sees certain disadvantages of being America’s first test-tube baby: “I can’t lie about my age and it’s a bit uncomfortable to still be called a baby.”
(jl)
