PROSPECT HEIGHTS — When Debra Gleeson was pregnant with her son, doctors told her that he would be born with a rare genetic disorder and not survive a week, therefore her best option was to terminate the pregnancy. Gleeson didn’t listen. She went ahead with the birth of her son, who turned out not to have the rare genetic disorder that the noninvasive prenatal test warned about. The test was a false positive.
“If I would have listened to them because of a test to end his life, a test that wasn’t even true.” Gleeson told Currents News, her voice clearly indicating her disbelief over the possibility.
It turns out that the false positive test result that Gleeson received wasn’t an anomaly, but a common outcome. A recent New York Times analysis found that noninvasive prenatal tests for rare conditions are wrong 85% of the time.
“It’s reprehensible,” said Archbishop William Lori of Baltimore, the United States Conference of Catholics Bishops pro-life chair. “First because of the needless anguish it puts mothers and fathers and families through, and secondly that it results in the termination of pregnancies of babies that should’ve been born into the world.”
Prenatal tests originally screened for Down syndrome until manufacturers saw an opportunity for financial gain by expanding the scope of the tests to include other rare conditions. The new technology used to do so — noninvasive prenatal testing — has improved the accuracy of identifying Down Syndrome, but it has struggled to accurately identify the docket of other rare conditions, according to the Times.
The Times further found that the companies lie about the accuracy of the tests. The analysis reviewed 17 patient brochures across eight of the testing companies and found that 10 of the brochures never mention that a false positive can happen.
The false confidence in these tests, however, reaches further than words in a brochure.
Pro-life leaders also point the finger at doctors who relay these test results to women with certainty, and oftentimes encourage extreme action.
“As a priest of some 45 years, more than once I’ve found myself trying to counsel and help families that have been in this exact situation, and the pressure on them to terminate is tremendous by the medical community,” Archbishop Lori said.
“The thing that bothers me so much about this is that it’s as though terminating the pregnancy is better for the baby, and that’s a completely upside down way of thinking,” he added.
Gleeson said doctors told her that there’s “no option” other than terminating her pregnancy “because he’s going to die anyways.”
Dr. Tara Sander Lee told Currents News that regardless of false-positivity rates, doctors need to present a more life-affirming message to mothers and families.
“If the test is positive they are often pressured to abort this child, and they’re given the absolute worst-case scenario,” Lee said. “They’re not told of all of the possible treatments that could potentially be available to help them.”
Lee also highlighted that mothers and families often aren’t aware that the prenatal tests are just screens and not diagnostic.
“They just predict whether or not there’s a risk,” Lee said.
Kathleen Gallagher of the New York State Catholic Conference said the way doctors often utilize the tests is indicative of the culture of death that exists. A 2014 study by the American Journal of Obstetrics and Gynecology found that 6% of patients who screened positive got an abortion without getting another test to confirm the initial test result.
“These tests could be used in a positive way to help parents foresee the challenges that may lie ahead, and to prepare them for those challenges,” Gallagher said. “But instead, termination is always the first option thrown out to people.”
The Tablet reached out to four of the leading manufacturers of the noninvasive prenatal tests – Quest Diagnostics, Labcorp, Natera and Myriad Genetics. A spokesperson for Quest Diagnostics referred The Tablet to a statement from the American Clinical Laboratory Association (ACLA) in response to the Times’ piece.
The statement, signed by Tom Sparkman, senior vice president of the ACLA, calls the piece “misleading,” claiming it “excludes any mention of the comprehensive regulatory requirements and patient protections” that are required.
“These tests, like all screening tests, are optional and intended to provide a preliminary assessment of potential risk for certain health issues and are not equivalent to, nor intended to be used as, diagnostic tests for specific fetal conditions,” Sparkman said.
Labcorp, Natera and Myriad Genetics did not return The Tablet’s request for comment.
Like many issues within the pro-life movement, leaders tout the importance of both legislative action and grassroots work to raise awareness and change minds.
Lee noted that there are over a dozen states that have passed legislation that prohibits discrimination on abortions based on prenatal screens, and urges people to contact their lawmakers to get more states on board.
At the same time, Lee called on pro-lifers to “create education and awareness” around the topic among friends, neighbors and families at the grassroots level.
Kathleen Domingo, the executive director of the California Catholic Conference, also wants expectant mothers and families to ask themselves if it’s really worth getting the prenatal tests in the first place, knowing the likelihood that they’re wrong.
“I think we really have to recognize that every child is a gift [from] God. We’re Catholic, and we believe God sends gifts and He has a better understanding of why He’s sending a particular child at a particular moment to a particular family,” Domingo said.