This week brought news of a vitally important medical development for millions of future parents. A study published in the New England Journal of Medicine reported that a new fetal DNA test is far more accurate and much less risky than current methods at identifying—and ruling out—serious genetic disorders including Down syndrome and Trisomy 18. Though still expensive (up to $2,000) and not yet covered by most insurers, the new blood test for pregnant women could bring a new generation of families peace of mind—or a crucial early warning—without first turning to invasive procedures like amniocentesis.
As the Boston Globe explained, the findings from the Boston researchers (funded by the test's creator, Illumina) could pave the way "for a new generation of prenatal genetic tests to be offered to all pregnant women." But because earlier and more accurate information about catastrophic fetal disorders could lead some women to terminate their pregnancies, a medical advance that could be a blessing for many Americans will be seen as a curse by the anti-abortion forces that now dominate the Republican Party. And as the flood of draconian abortion restrictions in states like Kansas, Alabama and Arizona suggests, conservatives can be counted on to undermine the use of the new test—or perhaps even ban it outright.
To understand why, a quick overview is in order. As the New York Times reported, the NEJM study "found that the fetal DNA test was 10 times better in predicting cases of Down syndrome than the standard blood test and ultrasound screening, and five times better in predicting the other disorder, Trisomy 18. It also greatly reduced the number of false-positive results." While a negative result from fetal DNA found in a pregnant woman's blood would rule out Down syndrome and Trisomy 18, a positive finding "would still need to be confirmed with invasive tests, because in more than half the cases in which the newer test predicted a disorder, there was no chromosomal abnormality." Dr. Diana Bianchi, the executive director of the Mother Infant Research Institute at Tufts Medical Center's Floating Hospital for Children and lead author of the study explained, "Nine out of 10 women who are currently being referred for further testing would not need invasive tests" like amniocentesis or chorionic villus sampling, which can be stressful, much more costly and carry small risks of miscarriage.
Please read below the fold for more on this story.
But as the Globe suggested, for anti-abortion activists that good for American women will negated by what they perceive as complete evil:
Since 2011, four companies have begun offering prenatal DNA tests that use a vial of the mother's blood to screen for conditions in which her fetus has abnormal numbers of chromosomes, such as Down syndrome. The research published Wednesday is the first US study to compare these new genetic tests with standard screening methods in large numbers of low-risk pregnant women, and it found the tests were more accurate and produced far fewer false positive readings.
That means fewer women who get tested would have to confirm their result with invasive tests such as amniocentesis, which carry a small risk of miscarriage. It could also lead to more women being screened with the new technology and more abnormal fetuses being identified at an early stage of pregnancy—when parents could consider having an abortion.
Dr. Hank Greely, director of the center for law and the biosciences at Stanford University predicted, "I think non-invasive prenatal testing is likely to be very, very widely adopted." But with that progress will come controversy. "I think that is likely to lead to some increase in the number of Down syndrome fetuses that are aborted," Greely concluded, adding, "How big an increase, I don't think we know."
One approach the GOP will certainly take is to try to limit access to or outright ban abortion in cases of fetal abnormalities. Last week, South Dakota Republicans tried—and failed for now—to get a bill out of committee banning abortion in cases of Down syndrome:
Under the measure, a doctor who performed or attempted an abortion sought because a fetus had been diagnosed with Down syndrome could have been charged with a misdemeanor punishable by up to a year in jail and a $4,000 fine. A woman seeking such an abortion could not have been penalized.
Rep. Steve Hickey, R-Sioux Falls, explained he reluctantly voted against the bill because its passage could complicate an ongoing legal challenge to other abortion restrictions recently passed by GOP-dominated South Dakota. “We all agree with this bill,” he lamented, “but there's a bigger battle."
And his Republican colleagues in other states are fighting it by other means. While Texas allows abortions in cases of fetal anomalies, in violation of Roe v. Wade the procedure is now illegal altogether 20 weeks after conception. (Combined with harsh new restrictions that have shuttered a third of the clinics in the Lone Star State, that law produced a horror story for one Texas couple who learned only in her 19th week that their child "had a brain defect so severe that the doctor described it as incompatible with life.") But as ThinkProgress detailed last week, states like Alabama and Oklahoma are trying new approaches to erect new barriers to what the National Right to Life Council deemed a woman's "search and destroy mission:"
Two obscure abortion proposals are currently advancing in Oklahoma and Alabama that would target women during some of the most emotionally painful moments in their lives. Both bills seek to prohibit women from having an abortion based on fatal fetal abnormalities unless their doctor provides them with "alternate options" first -- essentially, information about perinatal hospice centers that can care for the infants in the first few weeks or months of their lives, before they succumb to their fatal medical conditions.
To be sure, as ThinkProgress rightly noted, "Perinatal hospice centers are an important resource for parents who are faced with a devastating diagnosis that reveals their pregnancy is doomed." The centers helped grieving parents spend what little time they have with their child and help them with the process of saying good-bye. But many families seeking an abortion have already grappled with the heartbreaking end of life decision; for them the intervention of the state is just more torment. Phoebe Day Danziger
, who decided to have an abortion after learning her baby would quickly die from severe abnormalities, explained:
These decisions aren't really about "life" in the traditional way that term is used in debates over abortion rights. In reality, they're decisions about the best end-of-life care that a family can provide for a child who they will not have the chance to raise. "In our case, abortion was a parenting decision -- the most important and powerful one I have yet to make," Day Danziger noted.
To deny women like Day Danziger the moral agency to make perhaps the most painful decisions of their lives, Republicans in states like Arizona and Kansas want to prevent them from getting the information they need to make any choice at all.
With Senate Bill 142 signed into law last March by Governor Sam Brownback, Kansas moved to the forefront of the "Right to Lie" movement. That is, under SB 142, physicians who refuse to test for or communicate to parents findings of severe fetal defects are shielded from civil suits in so-called "wrongful birth" cases. The Kansas law, to which Brownback added the message "Jesus + Mary," states:
No civil action may be commenced in any court for a claim of wrongful life or wrongful birth, and no damages may be recovered in any civil action for any physical condition of a minor that existed at the time of such minor's birth if the damages sought arise out of a claim that a person's action or omission contributed to such minor's mother not obtaining an abortion.
(While Kansas has banned lawsuits by parents against physicians who refused to inform them of catastrophic fetal disorders, a new Iowa bill
now under consideration would allow women to sue their doctors for having performed a legal abortion at all.)
In Kansas and Arizona, social conservatives are encouraging—and protecting—medical malpractice to help deceive parents about the true health of their fetuses. There will be no more multimillion dollar judgments against doctors like those in Oregon, New Jersey and Washington because, as Kari Ann Rinker of the Kansas chapter of the National Organization for Women worried, "I believe it would allow them to lie about the results of an amniocentesis or simply opt out of even performing an amniocentesis that would normally be a part of standard care."
Sadly, Republicans across the nation are rapidly succeeding in making medical malpractice part of "standard care" for women seeking an abortion. Whether regarding potential birth defects, the spurious abortion-breast cancer link, fetal pain and mythical "post-abortion syndrome," doctors are being required to lie to their patients. More and more, physicians are being mandated to provide medically unnecessary and invasive ultrasound procedures in needlessly regulated facilities solely for the purpose of making Americans' reproductive rights a thing of the past. Meanwhile, states like Iowa are already trying to outlaw routine and safe practices like “doctors prescribing abortion-inducing drugs from remote locations, typically using a video link.” The slippery slope from such bans to restrictions or outright prohibitions on new fetal DNA testing techniques is a short one.
Simple genetic testing for fetal abnormalities, meanwhile, is the future for American women and their families. And while it is not without its ethical quandaries (imagine tests for eye or hair color, etc.), the benefits are profound. "The current testing scares the wits out of a very large number of women, relatively speaking, who when they go through further testing are found to have totally normal fetuses," said Dr. Michael Greene, chief of obstetrics at Massachusetts General Hospital, who wasn't involved in the study. "With this new test, the number of women who get inappropriately or improperly labeled as having an abnormal fetus is very small. So that's a major advantage."
A major advantage, indeed, as 29 year-old Jennifer Fontaine can attest. After a standard screening showed an elevated risk of Trisomy 18 in her fetus, Fontaine chose a "free-cell" DNA test over amniocentesis. "I wanted the noninvasive procedure," she said. Her DNA screen was negative for Trisomy 18, and her daughter, Morgan, was born healthy.
But women who instead receive the worst possible news will have advantages, too. They and their families will be armed with the knowledge to make the most private—and for many, the most difficult—choice imaginable.
Unless, that is, the Republican Party and its anti-abortion allies prevent it from ever happening. After all, American women can have no right to choose if there is no right to know.