Last month, my daughter Juliet began second grade, where her mother and I expect her to maintain her B+ average on spelling tests and straight A’s in Chinese. In addition to being a loving daughter and big sister, Juliet also is endowed with Down syndrome. At the start of the month, the Department for Health and Human Services (HHS) announced that future births of children like Juliet should be prevented. Down syndrome is the most common genetic cause of intellectual disability and, as such, will be targeted in the new HHS regulation’s free nationwide prenatal testing program.
Discussions of HHS’s new regulation have focused on the required availability of free contraceptive services under the Patient Protection and Affordable Care Act (PPACA). The regulation is the result of HHS’s adopting, in its entirety, the Institute of Medicine’s (IOM) report on Clinical Preventive Services for Women. Buried in the IOM report is the recommendation for no-cost well-woman visits; these visits include prenatal care—and thus prenatal testing for “genetic or developmental conditions.” The regulation was issued as part of the PPACA’s coverage of preventive services. This prompts the question, how does prenatal testing prevent Down syndrome?
The IOM report defines preventive services “to be measures . . . shown to improve wellbeing, and/or decrease the likelihood or delay the onset of targeted disease or condition.” Down syndrome occurs at conception. Prenatal testing simply identifies whether a pregnancy is positive for Down syndrome—a prenatal diagnosis after which most women choose to terminate their pregnancy. A prenatal test does not decrease the likelihood of Down syndrome in a person; it does allow for a decreased likelihood of a person with Down syndrome surviving beyond the womb. If this is how HHS is justifying prenatal testing for Down syndrome as preventive care, then HHS has ushered in a program meant to target future children like Juliet.
The targeted elimination of people with Down syndrome is, in fact, the goal of other countries that have adopted nationwide prenatal testing programs—a goal some other countries are now realizing. Indeed, according to the Copenhagen Post, Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future,” due to its nationwide prenatal screening program, in place since 2004.
Perhaps the HHS is not purposefully trying to sneak in a modern-day eugenics program to eliminate Down syndrome by regulation. It is likely that the IOM report relied on professional guidelines that recommend the offering of prenatal testing for Down syndrome. Actual experience, however, has shown that such tests do not “improve wellbeing”—certainly not for the aborted child, but also not for the expecting parents.
Robert Resta, a Genetic Counselor, notes in August’s American Journal of Medical Genetics that “there is very little empirical evidence that prenatal knowledge improves medical, developmental, emotional, or adaptational outcomes.” Further, studies have found that prenatal testing increases the mother’s anxiety, regardless of the test results; that women often do not make informed decisions about accepting prenatal testing or decisions made after a diagnosis and that, when abortion is the chosen response, a significant number of women experience post-traumatic stress.
The lone dissent to the IOM report by a committee member makes the point that clinical guidelines “were never intended to provide a basis for insurance coverage determinations; they are intended as guides to physician practices.” Yet, if the IOM’s incorporation of such guidelines is the HHS’s justification for covering prenatal testing, then why does HHS not provide for the other information required to accompany prenatal testing?
The IOM report states that informed decision-making “is structured to give an individual all the information needed to choose from among different clinical options, such as whether to undergo genetic testing.” Professional guidelines require that physicians be well-informed about Down syndrome, offer accurate information, and recognize that parent support organizations can be very helpful. This summer, the National Society for Genetic Counselors and the American Academy of Pediatrics required that this balancing information be part of prenatal care. Both further note that families “benefit from hearing a fair and balanced perspective, including the many positive outcomes of children with Down syndrome and their effect on the family.”
The need for this information is so apparent that, in 2005, two senators from opposite sides of the abortion issue, Senators Ted Kennedy and Sam Brownback, co-sponsored legislation that recognized the need to provide accurate, balanced information and support by parent organizations. In 2008, the Prenatally and Postnatally Diagnosed Conditions Awareness Act was signed into law, but it has yet to receive any appropriations. Similarly, the HHS regulation only requires coverage of the testing itself, but says nothing about covering the provision of proper training, accurate written materials, or support to or through parent organizations—things that could, in fact, improve the parents’ and child’s wellbeing after receiving a prenatal diagnosis.
It seems hard to believe that Congress and the President meant for the PPACA to institute a national prenatal screening program that targets Down syndrome and also fails to provide all of the required information to expectant mothers. Sen. Mikulski introduced the provision for preventive services for women, yet she was also the lead sponsor of Rosa’s Law, a law that replaces “mental retardation” with “intellectual disability” in federal publications. Rosa’s law was named after one of her constituents, who, like Juliet, happens to have Down syndrome. Further, given that HHS's regulation not only encourages prenatal testing's discrimination against Down syndrome, but also disrespects a woman's exercise of informed choice, it is unlikely that members of the bipartisan Congressional Down Syndrome Caucus would allow the regulation to remain in effect.
Prenatal testing for Down syndrome should not be labeled as preventive medicine—an inaccurate and misleading description of a procedure that may prevent Down syndrome births, but certainly does not prevent Down syndrome. A regulation should not be allowed to target a portion of our society for elimination without public debate by accountable elected officials. If the regulation is to remain in place, then additional funding should be provided for all the information required to respect a woman’s choice following a prenatal diagnosis. The President and the Congress should see that the new HHS requirements for preventive care expressly exclude coverage of prenatal testing for Down syndrome unless and until there is public debate and balanced funding for the needed resources. You can help them do that by leaving a comment on this new regulation here.
Mark W. Leach is an attorney from Louisville, Kentucky. He serves on the Board of Directors for Down Syndrome of Louisville and Down Syndrome Affiliates in Action, a trade association of local parent support organizations. The views expressed here are entirely his own and not to be attributed to any associated organization.