A recent case of parents suing for "wrongful birth" demonstrates some of the unforeseen legal complications in an era of prenatal genetic screening. When Sarah Hall was 16 weeks pregnant, the Daily Beast reports (while changing the names of all involved for reasons of privacy), she underwent amniocentesis, a commonly used procedure for prenatal screening of genetic defects. Because her husband Mark’s sister had a rare genetic disease and Mark himself was an asymptomatic carrier of the disease, the expectant mother wanted to be certain as to whether or not her child would be born healthy. After the geneticist’s report was sent to her obstetrician, an employee in that office called the Halls to inform them their daughter was a carrier, just like Mark, but she would not be symptomatic.
The worst you can imagine soon came to pass. While the Halls’ daughter, Ellie, appeared healthy at birth and during her first few months of life, she suddenly stopped developing normally when she was about 6 months old. Ellie’s earliest symptoms, however, were immediately ruled out as evidence of any genomic defect, since the prenatal tests indicated she was free of such genetic abnormalities. Yet, their daughter’s condition continued to worsen, and at 18 months, their pediatrician carefully suggested they see a geneticist.
After further testing, a diagnosis was made: Ellie was not a carrier but a sufferer of the rare disease screened for during amniocentesis. This sad news prompted the Halls to ask for the geneticist’s original report. It was clear: The amniocentesis results had been misread by the obstetrician’s office, and so today, they are negotiating a legal settlement by suing for "wrongful birth." Essentially, they are claiming they would never have had Ellie if they had known she would be disabled.
What is a ‘wrongful birth’ lawsuit?
Currently, when a doctor fails to notify parents of an abnormality on prenatal screening tests, parents who wish to seek damages file a "wrongful birth" lawsuit, a type of lawsuit permitted in about half the states in the United States. Wrongful life suits, in which the child must act as the plaintiff, are only permitted in three states. Both types of lawsuits are relatively rare, as they present complex legal and ethical questions.
NPR reports a Florida couple won $4.5 million when a jury agreed their doctor did not adequately screen for birth defects and their son was born with just one limb. In a similar case, parents of a child born with Tay-Sachs, a genetic disorder that is usually fatal by age 4 or 5, settled out of court with their doctor who had failed to test for the disease, though they were likely carriers as the disease mainly affects Jewish families. In another case, ABC reported Oregon parents of a 4-year-old with Down syndrome won $2.9 million after doctors misdiagnosed the child during prenatal screening.
To bring these lawsuits, parents must argue if they’d known about their child’s disability, they would never have had the child — they must testify, then, they would have terminated the pregnancy. Yet, many people argue there’s no need for a special lawsuit (and special arguments) in such cases; instead, parents might simply file a standard medical malpractice lawsuit — same as when a doctor fails to identify a brain tumor, say — without testifying they most certainly would have aborted their child.
(After all, malpractice suits do not require a patient to say what they would have done given the news of a brain tumor.) In the case of the Halls, for instance, the incorrect results lengthened their "diagnostic journey," a term used to describe the amount of time, effort, money, and heartache involved when searching for a correct diagnosis, especially in cases of a rare disease. Most of us would interpret a needlessly long "diagnostic journey" as substantial evidence of personal harm resulting from a mis-read test.
What is most clear about any form of medical malpractice case is that the personal details matter a great deal while the private effects are significant. What is most interesting in "wrongful birth" cases is no one speaks of possible instances of the opposite. For instance, one family I know had undergone genetic screening and when the test results returned, their doctor delivered exceedingly sad and painful news: Their daughter had a genetic anomaly, which meant she had Down syndrome. Because this couple had already decided against abortion, no matter what their doctor told them, they proceeded with the pregnancy, preparing for a disabled child. By the time the mother’s due date arrived, they had fully accepted their daughter’s (and their own) fate. However, the birth of their daughter brought unexpected delight; she was entirely lacking in any genetic defect, Down syndrome or otherwise. They welcomed their "perfect," healthy girl.
Privately, I’ve always wondered what exactly happened behind the scenes: Was the test itself inaccurate or had a technician misread the report, similar to what happened in the case of the Halls? A likely scenario could be the results were accidentally swapped with those of another family. Perhaps another family had been told their child would be healthy and normal, when in fact their child was born with Down syndrome. Today, I wonder, how many times have parents been told their child is unhealthy only to abort what could have been a healthy child? Knowing a couple who luckily did not abort their healthy child, I certainly would recommend a second opinion whenever it comes to genetic tests.