“I was coming home to tell them that I was pregnant, but instead I had to tell them the news I got this horrible result back,” Ms. Bannon was driving to her parents’ house, with her son in the back seat wearing a “big brother” T-shirt. Bannon took to mean a choice about whether to end the pregnancy. When Meredith Bannon’s pregnancy tested positive for DiGeorge syndrome, a nurse called and told her she and her husband would soon face “tough decisions” related to their child’s “quality of life,” which Ms. Eight said they never received any information about the possibility of a false positive, and five recalled that their doctor treated the test results as definitive. They recalled frantically researching conditions they’d never heard of, followed by sleepless nights and days hiding their bulging bellies from friends. In interviews, 14 patients who got false positives said the experience was agonizing. They issued written statements that said patients should always review results with a doctor, and cautioned that the tests are meant not to diagnose a condition but rather to identify high-risk patients in need of additional testing. That same year The Boston Globe quoted a doctor describing three terminations following unconfirmed positive results.Īfter being presented with some of The Times’s reporting, half a dozen of the largest prenatal testing companies declined interview requests. A 2014 study found that 6 percent of patients who screened positive obtained an abortion without getting another test to confirm the result. The companies have known for years that the follow-up testing doesn’t always happen. Those tests can cost thousands of dollars, come with a small risk of miscarriage and can’t be performed until later in pregnancy - in some states, past the point where abortions are legal. Patients who receive a positive result are supposed to pursue follow-up testing, which often requires a drawing of amniotic fluid or a sample of placental tissue.
“I think the information they provide is misleading,” he said. office that oversees many medical tests, reviewed marketing materials from three testing companies and described them as “problematic.” does not regulate this type of test.Īlberto Gutierrez, the former director of the F.D.A. The Food and Drug Administration often requires evaluations of how frequently other consequential medical tests are right and whether shortfalls are clearly explained to patients and doctors. There are few restrictions on what test makers can offer. “The chance of breast cancer is so low, so why are you doing it? I think it’s purely a marketing thing.” “It’s a little like running mammograms on kids,” said Mary Norton, an obstetrician and geneticist at the University of California, San Francisco. Some said the blood screenings that look for the rarest conditions are good for little more than bolstering testing companies’ bottom lines.