I asked Mark Leach, a lawyer whose daughter has Down syndrome, to offer a reflection on how the Supreme Court’s recent ruling regarding the Patient Protection and Affordable Care Act would impact the lives of individuals:
A common reaction to the recent Supreme Court decision upholding the Patient Protection and Affordable Care Act (PPACA) was that it was “unexpected.” The Chief Justice reportedly sided with the dissenters to overturn the entire law, only to then switch and author the majority opinion. But buried within the PPACA regulations is something that for many also should be unexpected. If it’s not addressed, it does not matter what else PPACA does for individuals with Down syndrome and their families.
Pursuant to PPACA’s provision for no-cost preventive care services for women, insurance policies will be required to provide no-cost prenatal genetic testing starting August 1, 2012. A preventive treatment exists in response to many non-genetic prenatal tests. For instance, when my wife was expecting our daughter, she was prenatally tested for gestational diabetes and was able to monitor her condition so that it did not negatively impact the pregnancy. This is not the case, however, for prenatal testing for Down syndrome, the condition our daughter has had since at or near her conception.
There is no treatment pre- or post-natally for the extra 21st-chromosomal material that causes Down syndrome. Currently, an estimated 400,000 Americans have Down syndrome. Characterizing prenatal testing for Down syndrome as “preventive care” expresses a policy that fetuses diagnosed with Down syndrome should be prevented from being born. Indeed, a member of the Court’s majority, Justice Ginsberg, previously stated in an interview that one purpose of abortion is to reduce “populations that we don’t want to have too many of.” Population reduction is exactly what happens where there is a public policy for prenatal genetic testing.
Public policies for prenatal testing result in more pregnancies being diagnosed and aborted. Graphs accessible at the European Surveillance of Congenital Anomalies database demonstrate this impact, with the rate of Down syndrome pregnancies increasing, but the number of live births decreasing in those countries with a public prenatal testing program. This impact is not solely a European experience.
California has had a state prenatal testing program since the 1980’s. Program researchers have stated that the program’s purpose was to reduce the number of babies born with Down syndrome. Though almost 1,400 births with Down syndrome would otherwise have been expected during the study’s time period, only just over 700 babies were actually born, resulting in an almost halving of the next generation of children with Down syndrome. For every baby born with Down syndrome, another was aborted. The goal of the program is being achieved: babies with Down syndrome are being prevented from being born through prenatal diagnosis and abortion.
In and of itself, prenatal testing is value neutral and simply provides information—indeed, the diagnosis of Down syndrome is typically accompanied by shock because it, too, is unexpected. Further, reducing the cost of prenatal testing through public policies is not necessarily problematic. But if prenatal testing is to be offered at no-cost, why is there not a corresponding mandate to provide all of the information necessary for an expectant mother to make an informed decision?
Adequate training of health professionals on prenatal testing and what life is like for individuals with Down syndrome and their families; accurate information about the prenatal tests and Down syndrome for patients; access to genetic counselors; and referral to support organizations are all called for by professional guidelines and federal law. Yet the PPACA regulation does not require providing this information. As a result, only part of the information, the prenatal diagnosis, is required to be offered, but not the other resources necessary for mothers to make an informed decision.
To say that a genetic condition should be prevented, with the only means of that prevention being abortion, is morally objectionable. It hearkens back to the eugenics atrocities of the last century. To further have that goal stated by a federal regulation is grossly objectionable and, one would hope, unexpected by our elected officials, as it very likely was when the regulations were passed. But since then, the Senate sponsor of the amendment under which the regulations were issued, Sen. Mikulski (D-MD), has been called out in local print media, and Rep. Cathy McMorris-Rodgers (R-WA), a mother to a son with Down syndrome and leader of the Congressional Down Syndrome Caucus, has been briefed on the regulation targeting Down syndrome for prevention. But nothing has been done.
The remaining merits of PPACA can and should be addressed as it impacts families with Down syndrome. Discussing the benefits or negatives of PPACA to individuals with Down syndrome, however, will not matter if PPACA’s intention of preventing these fellow members of our society from being born is allowed to go into effect this August 1, 2012. The Supreme Court had a chance to void these regulations by striking down the law. I now would welcome the unexpected action to rescind the PPACA regulation’s requirement for no-cost prenatal genetic testing for conditions that cannot be treated by Rep. McMorris-Rodgers, Sen. Mikulski, or any other elected official who wishes to keep our government from saying that those with conditions like my daughter’s should be prevented from being born.
Mark W. Leach is an attorney from Louisville, Kentucky, and a Master of Arts in Bioethics candidate (2012). Today happens to be his daughter’s birthday, a gift that has received an unexpected outpouring of support since the day she was born.