In December 2014, the New England Center for Investigative Reporting (NECIR) released its research into the new non-invasive prenatal-screening tests that are now being offered to pregnant women.
These tests look at minute amounts of placental DNA that are in the mother’s blood. This small amount of fetal DNA can be detected as early as 10-weeks’ gestation. The tests only require a blood sample, and they give a couple a non-invasive, early look at the genetic health of their unborn baby.
The NECIR exposé, titled “Oversold and Misunderstood,” is shocking. While many of the companies offering these new screens, which are not approved by the Food and Drug Administration, tout that the tests are “99% accurate,” the center uncovered that these tests gave false alarms nearly half the time, especially for rare chromosomal abnormalities like trisomy 13.
This means that perfectly healthy fetuses are being aborted because of the results of these screens. The NECIR reports: “And at Stanford University, there have been at least three cases of women aborting healthy fetuses that had received a high-risk screen result.” “The worry is women are terminating without really knowing if [the initial test result] is true or not,” said Athena Cherry, professor of pathology at the Stanford University School of Medicine, whose lab examined the cells of the healthy aborted fetuses. In one of the three Stanford cases, the woman actually obtained a confirmatory test and was told the fetus was fine, but aborted anyway because of her faith in the screening company’s accuracy claims. “She felt it couldn’t be wrong,” Cherry said.
The NECIR concludes that “companies are overselling the accuracy of their tests.”
It is a tragedy when any child is aborted, for sure, but it seems particularly horrifying that babies are being torn from their mothers’ wombs because of misleading, even predatory, marketing.
How has this happened? When did we become a society where the lives of the next generation hinge on the results of a single test that is not even regulated by the FDA?
As someone who has performed genetic testing for thousands of patients, I can say that the problem is deep and multifaceted.
On the surface, there is a general lack of understanding about the limits of genetic testing by both the public and by medical professionals. These new non-invasive prenatal tests are only screens. They are not diagnostic tests and should not be used as such.
What is the difference between a screen and a diagnostic test? A screen is given to a general healthy population and usually is highly sensitive, so that any potential problems are identified. Because of the high sensitivity, false positives are more common. A screen is always supposed to be confirmed with a diagnostic test. A diagnostic test is designed with high specificity for a particular condition. It is often more invasive and is meant as a tool to make a definitive diagnosis.
Because these new prenatal screens are advertised as having “near-diagnostic accuracy,” women are skipping the diagnostic test or, in the Stanford case mentioned above, disregarding the diagnostic results in favor of the screen. Either way, if companies are presenting these screens as good as or better than diagnostic tests to doctors and patients, then these businesses are seriously negligent.
But the distinction between a screen and a diagnostic test is only a small issue on top of a much larger and more systemic problem: the use of prenatal testing in conjunction with abortion as a seek-and-destroy mission to kill anyone with a genetic abnormality.
In general, prenatal testing is not inherently immoral. Ideally, prenatal testing would only be used to find out more about the life growing in the womb in order to give that new life the best possible medical care. There will likely be a time when gene therapy has progressed to a point where the effects of chromosomal abnormalities can be treated in utero, and babies with genetic diseases can be born to live healthy lives, thanks to early intervention.
Prenatal testing is, and should be, an essential component to treating the unborn.
The Vatican Congregation for the Doctrine of the Faith, in the late 1980s, asked, “Is prenatal diagnosis morally licit?” and then answered, “If prenatal diagnosis respects the life and integrity of the embryo and the human fetus and is directed towards its safeguarding or healing as an individual, then the answer is affirmative.”
Unfortunately, abortion on demand has spoiled the fruit of the prenatal-testing tree. Instead of focusing on cures or treatment, the medical community has turned instead to making sure no one with a genetic abnormality ever makes it out of the womb. This is not medicine; it is simply getting rid of the sick. And yet many medical professionals truly believe this is a valid method for dealing with genetic disease.
This misguided approach is analogous to killing all the patients with cancer and then proclaiming that cancer has been “eliminated.” Prenatal testing followed by abortion is no different: No disease is actually treated; the patient is eradicated instead. It is quite literally throwing the baby out with the genetic bath water.
Even more pernicious is the pervasive idea that abortion is the compassionate option once an adverse prenatal diagnosis is made. Our society has the erroneous belief that it is better to be dead than disabled. Also, there is the short-sighted assumption that if there is no treatment now there never will be. Together, these fallacies give medical professionals the perceived obligation to bully vulnerable women into abortion.
There is ample evidence that this is a common occurrence. Look on any website that supports those with genetic abnormalities, and there are countless stories of families that were given very little relevant information about their unborn children’s conditions and then were repeatedly encouraged to terminate their pregnancies.
Lori Andrews, a lawyer, wrote in her book The Clone Age:
“A woman I know was told by her obstetrician that her fetus had Down syndrome. The doctor ordered her to abort; she refused. ... Another woman was similarly coerced. Her doctor told her that her baby would be more like a fish than a human and would only be as smart as a baboon.”
A Special Mother Is Born, by Leticia Velasquez, is a compilation of stories from families of children with special needs. It seems that in every story the medical community is guilty of some dereliction of duty. In a disturbing undercurrent, the book chronicles mistreatment of parents and children by doctors, nurses and genetic counselors. These medical professionals have pressured women into aborting their children with special needs and have neglected these children if they were lucky enough to be born.
Not only is the idea that is it better to be dead than disabled wrong-headed, it is flat out wrong. Researchers at Children’s Hospital in Boston surveyed more than 2,000 families where a member had Down syndrome. They found that nearly 80% of parents said their outlook on life was more positive because of their child with Down syndrome.
In addition, 99% of adults with Down syndrome report that they are happy with their lives. Such a statistic would never be found in “normal” adult populations.
New prenatal tests will continue to be developed. They will tell us more about the unborn at even earlier stages. These tests have the capacity to accomplish great good. But unless we acknowledge that the most important thing they tell us is that an actual human being is growing and developing inside the womb, their effect will continue to be poisonous to the unborn and to society as a whole.
A massive shift is needed. We as a society need to abandon the fallacy that abortion is an appropriate medical treatment for genetic abnormalities. Medical professionals need to get back to sound medical principles, namely caring for the unborn, instead of simply discarding them.
Rebecca Taylor is a clinical
in molecular biology.
She writes about bioethics on
her blog Mary Meets Dolly.