Each year, March 21st is World Down Syndrome Day (WDSD). The date 3/21 was chosen as a representation of the genetic cause of the condition, a triplicate of the 21st chromosome. WDSD seeks to raise awareness of a genetic condition that may very well diminish to the point of disappearing. This is due to the prenatal testing sham.
Since the beginning of the year, headlines have touted advancements in prenatal testing. Laboratories are promising a prenatal diagnostic test for Down syndrome based solely on a blood sample from the expectant mother. This would be an improvement over current diagnostic testing, which involves the insertion of a needle into the womb and a risk of miscarriage. The promised new testing is on the verge of realization as soon as next year.
This new testing is being justified for its ability to provide mothers with information about their pregnancies more safely and earlier than ever. News reports relay how the new testing will save babies, eliminating the risk of miscarriage inherent in current diagnostic testing and promoting healthy births. Once available, it is expected that the testing will have almost universal uptake. Indeed, the test developers are banking on this—literally, in the case of Sequenom, a publicly traded company whose stock price is rebounding after plummeting from earlier, false reports about its testing.
But what is less reported in the coverage on the new testing is its likely impact. Already, existing prenatal testing is followed by high termination rates, exceeding 70 percent in California, and 90 percent in England and Europe. At this high percentage, it is more accurate to call it an “elimination rate.” With each advance in prenatal testing, the next generation of children born with Down syndrome is smaller, so much so that there are close to 50 percent fewer children born with Down syndrome than if all were carried to term.
Some have argued that this impact is modern-day eugenics. Certainly the halving of future generations, with abortions being performed purely because of the genetic makeup of the child, sounds of eugenics. But the test developers, and many others, are quick to point out that the testing itself is purely informative. And many mothers of children with Down syndrome will say the same thing, expressing appreciation for having known their child’s condition prenatally so that they could prepare, on their terms, for how to share the news and for delivering at a hospital with the appropriate neonatal services. Furthermore, professional medical associations, noted bioethicists, and many courts in this nation have found an obligation that prenatal testing be offered, out of respect for the mother’s autonomy and her right to choose whether to continue her pregnancy.
This is the medical, ethical, legal, and industry line: the availability of prenatal testing for Down syndrome is required out of respect for a woman’s right to choose. This, too, is a sham.
Since 2007, the professional recommendation has been for all expectant mothers to be offered prenatal testing for Down syndrome. A study issued the previous year found that almost half of all obstetricians admitted that their training on prenatal testing was “barely adequate” or “non-existent.” Studies since have shown that prenatal testing for Down syndrome overwhelmingly does not respect a woman’s autonomy. At best, less than half of all expectant mothers make an informed decision in accepting prenatal testing. The most likely outcome following a positive prenatal test, abortion, is rarely mentioned until a positive diagnosis, and then in a rushed, hurried, and often coercive fashion. Those who terminate often already consider themselves mothers and their fetus a baby, and recognize that their decision ends their child’s life.
What’s more is that, for all the talk of prenatal testing being only the sharing of information and not requiring abortion, test developers nonetheless count on most mothers terminating. They have to in order to justify the unnecessary costs of their testing. Over 99 percent of pregnant women are not carrying a child with Down syndrome. While a negative prenatal test may provide welcomed reassurance, from a dollars-and-cents perspective, it is an unnecessary expense. Developers of prenatal testing, however, have justified these unnecessary expenses by demonstrating through cost-effectiveness studies that such costs can be offset to the private insurer or the public healthcare system, provided that enough children prenatally identified with Down syndrome are terminated. In this way, prenatal testing is promoted as “saving” the health care system the added medical costs associated with Down syndrome. For all their public defenses, test developers nevertheless rely on a high percentage of abortions to justify the cost of their testing.
But the regime of prenatal testing for Down syndrome is exposed for the sham that it is when the double standard within prenatal testing is considered. In 2007, the same year that the American Congress of Obstetricians and Gynecologists (ACOG) recommended that all women be offered testing for Down syndrome, ACOG’s ethics committee issued an opinion finding that prenatal testing for sex selection was unethical. The same arguments for prenatal testing for Down syndrome can be made for prenatal testing for sex selection. Sharing the information about the sex of the child is simply respecting a woman’s right to choose by giving her information she can use to determine whether to continue her pregnancy. But, in the same year that ACOG said all women should be offered testing for Down syndrome, it also said it is unethical to use prenatal testing for sex selection because it enforces sexist opinions that one sex is more desirable or valuable to society or a family than another. The ACOG committees that worked on the contrasting statements failed to appreciate the doublespeak, since prenatal testing for Down syndrome reinforces discriminatory attitudes against those considered to have disabilities. Upon seeing a baby girl, strangers do not ask “why didn’t her parents undergo prenatal testing,” but that question is asked of parents when that little girl happens to have Down syndrome.
The recommendation for universal offering of testing, however, has quickly become the standard of care, with the prenatal testing laboratories benefiting. If the test developers do believe that all they are providing is information, then perhaps they also should provide fuller and more complete information.
In 2008, the passage of the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act expressly recognized the need for balancing the information on Down syndrome given after positive prenatal tests. Yet it has never been fully funded and has no compulsory language requiring the sharing of accurate information. The laboratories, however, would certainly strengthen their defense against the charge of purveying a sham on society if they were to provide more balanced and accurate information, and, in doing so, truly respect women’s autonomy.
Resources to balance the conversation are available right now: Lettercase distributes a printed resource, approved by representatives of ACOG, the American College of Medical Genetics, the National Society of Genetic Counselors, the National Down Syndrome Society, and the National Down Syndrome Congress, for mothers still deciding about prenatal testing or following a diagnosis; Brighter Tomorrows is a physician training module on delivering a prenatal or postnatal diagnosis of Down syndrome; Down Syndrome Association of Greater Cincinnati maintains a national registry of over 250 parents wanting to adopt children with Down syndrome; and Down Syndrome Pregnancy is an online resource for mothers who have decided to continue their pregnancy following a diagnosis.
Absent some fundamental societal change, these offsetting resources are really the only chance we have to turn the tide of decisions following a prenatal diagnosis. Otherwise, we will continue to see ever fewer children born with Down syndrome. Those of us who happen to be blessed with a child with Down syndrome, or blessed to know one, know that our society will be that much poorer for every missed opportunity to experience the unique kind of love and compassion delivered by and to these fellow members of our society.
Mark W. Leach is an attorney from Louisville, Kentucky pursuing a Master of Arts in Bioethics. He serves on the Board of Directors for Lettercase, recently presented on Brighter-Tomorrows at the annual conference for professors of obstetrics, and was a reviewer of the free downloadable book at downsyndromepregnancy.org. The views expressed here are entirely his own and not to be attributed to any associated organization.