America’s first IVF baby is fighting for the treatment that gave her life

Carr, 42 years old, is the first baby born by in vitro fertilization in the U.S. Over the years she has told countless audiences how the technology made it possible for her mother to have a baby.

In the weeks since Alabama’s Supreme Court ruled that frozen embryos should be considered children, Carr has called for protections around IVF procedures—extracting eggs, fertilizing them in a lab and transferring an embryo into a uterus—that now account for some 2% of U.S. births annually.

Sen. Tim Kaine (D., Va.) said federal legislation backing IVF access would “enable the Elizabeth Carrs of the world to continue to be born." Kaine invited Carr to accompany him on Thursday to President Biden’s State of the Union address.

“My life gives people hope," Carr said.

The Alabama ruling is galvanizing Carr’s work in another way. Carr leads public relations and patient advocacy at Genomic Prediction, which sells genetic tests to screen embryos. Doctors can order tests for patients who want to screen for diseases and abnormalities or get an overall embryo health score. Patients and doctors can use the results to decide which embryos to transfer. Unused embryos can be stored for years. Some get discarded.

The tests are controversial. Carr’s work, like her life story, are reminders that technology has already advanced beyond the creation of embryos outside the body to techniques that raise deeply personal questions. The tests can reveal information that obliges potential parents to choose among embryos and envision what constitutes a good life.

For years, genetic tests allowed people who knew they carried genes for lethal diseases to choose embryos that didn’t have them. Scientists checked whether embryos contained a gene that caused serious genetic conditions such as cystic fibrosis or Duchenne muscular dystrophy. Other tests of whether embryos have too many or too few chromosomes, a main cause of miscarriage, are increasingly common. Genomic Prediction also sells a test to predict a future child’s risk of heart disease, schizophrenia, cancers and diabetes. These are all complex conditions that can involve interactions among hundreds of genes. Many aren’t fully understood.

IVF doctors disagree over whether the benefit of the tests has been proven. “What causes a pregnancy to fail or to succeed is still a black box," said Dr. Eli Adashi, former dean of medicine and biological sciences at Brown University.

More than half of some 6,800 people surveyed for a paper published in the journal Science last year said they didn’t object to using genetic tests to screen embryos for medical and nonmedical issues.

Carr says patients should know what the latest tests can do and decide for themselves. “If my mother had not been told by her doctor about IVF, I would not be here," Carr said.

New beginnings

Judith Carr, now 70, was an elementary school teacher living in Westminster, Mass., when her doctor told her she couldn’t have biological children. Carr had suffered her third ectopic pregnancy, when a fertilized egg develops outside the uterus.

The doctor handed her a pamphlet he picked up at a medical conference about a novel procedure called IVF. He recommended she contact doctors at a new clinic in Norfolk, Va.

She and her husband, Roger, an engineer, flew to Norfolk and were accepted into a program that had made 41 unsuccessful IVF attempts up to then. The doctor asked Roger if he played craps. “IVF is a crapshoot," the doctor said.

They transferred the embryo on Judith Carr’s 28th birthday. A few weeks later, she learned she was pregnant.

During one checkup, a doctor asked Carr if she wanted a procedure called amniocentesis that removes amniotic fluid and cells around the fetus for testing. The procedure carries a risk of miscarriage. Judith and Roger decided against it.

“We decided whoever this child was, we would love," Judith said.

Elizabeth’s birth attracted so much attention that armed guards were posted outside Judith’s room and near the nursery. For years, Elizabeth and her parents flew to the fertility clinic every Mother’s Day for a reunion of all the IVF babies created there. When Elizabeth was 10, she held IVF babies 1,000 and 1,001, twins from Rhode Island, on her lap for a photo shoot.

The reunions stopped shortly afterward. “There was no space to hold us all," she said.

Carr received extensive medical testing including brain-wave measurements through her 20s. When she got pregnant naturally and had her now-13-year-old son, the IVF pioneers kept tabs on her pregnancy.

“People wanted to make sure everything was normal," Carr said.

Lively debate

The trajectory of Carr’s life illustrates how science often advances faster than the ethical rules to address it. Screening embryos for more complex conditions could eventually lead to scientists providing estimates about the likelihood of embryos having blue eyes, excelling in school or playing sports.

“We are being asked to decide these deeply difficult and complicated moral and ethical issues that come up in the context of making new people outside of bodies," said Kimberly Mutcherson, professor of law at Rutgers Law School, who writes about reproductive technology.

Nationwide debate following the Alabama court decision could draw scrutiny to tests from Genomic Prediction and other companies.

“We will have to spend more time on politics than science, which is unfortunate," said Nathan Treff, Genomic Prediction’s co-founder. Treff said he is relying on Carr to help bridge tensions between the two. For Carr, the lines between the personal and the political often blur. “How do we explain our product to people?" Carr said. “How do I explain my life?"

Write to Amy Dockser Marcus at Amy.Marcus@wsj.com