A Few Make a Rare Few Rarer: Reflections on World Down Syndrome Day

 
 

Unless regulations and laws are changed, there will be fewer people with Down syndrome to celebrate on future World Down Syndrome Days, making this year the high water mark of lives with Down syndrome.

In 2011, the United Nations passed a resolution formally recognizing today, March 21, as World Down Syndrome Day (WDSD). This past weekend, my family attended a potluck for parents of children up to age five and then attended two birthday parties for friends we had met at one of those potlucks years ago. A rare few will make these types of weekends even rarer for future families.

The most recent news about Down syndrome, unfortunately, has been the headlines about “wrongful birth.” On March 9, 2012, an Oregon jury awarded Ariel and Deborah Levy $2.9 million against Legacy Health System. Their claim: that but for Legacy’s negligence in conducting prenatal testing, the Levys swore under oath that they would have aborted their daughter—whom they say they dearly love—because she was born with Down syndrome, making her birth wrongful. The reporting politely characterized this testimony as “awkward,” but it is probably true.

The Levys aggressively pursued prenatal testing. Deborah Levy underwent the riskiest prenatal diagnostic test: chorionic villus sampling. Of all forms of prenatal testing, this first-trimester procedure has the highest risk of miscarriage. While many opt for prenatal testing in order to be informed and to prepare for the birth of their child, undergoing the earliest available prenatal diagnostic test makes it more likely than not that the Levys were at least considering abortion if their daughter’s cells showed the triplicate of the 21st chromosome, the genetic cause of Down syndrome (and why 3/21 was chosen as World Down Syndrome Day). So, it is probably true that they planned on aborting their daughter.

It is also probably true that the Levys do dearly love their now four-year-old daughter. Studies have shown that parents and siblings overwhelmingly report loving their family member with Down syndrome and that individuals with Down syndrome similarly report being happy with their lives. However, it does not sound as though their love for their daughter was the focus of the Levys’ testimony.

Instead, in order to prove that they have been damaged by missing the opportunity to abort their daughter, the Levys testified about their fears of having to provide for their daughter over her lifetime. Experts further predicted that this pre-schooler probably would not be able to live independently or earn a living, although there is, of course, no way of knowing whether she would have joined the ever-increasing number of individuals with Down syndrome who both work and live in their own homes. In post-trial comments, jurors, who refused to be named, expressed pity for the Levys.

And so, twelve people issued a multi-million-dollar verdict that probably will result in medical providers practicing defensive medicine in order to avoid wrongful birth lawsuits. Prenatal testing will be aggressively offered, repeatedly, with reminders of the window closing on the chance to have an abortion. By doing so, the medical providers will then have a defense should any patient end up actually giving birth to a child with Down syndrome and sue them in order to potentially receive millions of dollars. Indeed, this is part of the reason why patients are offered prenatal testing for Down syndrome in the first place.

When the first prenatal screening test came out, called AFP, short for alpha fetoprotein test, the American Congress of Obstetricians and Gynecologists (ACOG) recommended against it being used for Down syndrome because its false positives were so high that it did not provide medically reliable information for that condition. Then, lawsuits were brought by parents who, like the Levys, said they would have aborted their child with Down syndrome but for their practitioner failing to offer them AFP testing. In response, ACOG issued its first ever “Liability Alert,” which stated that it was “imperative that every prenatal patient be advised of the availability of [AFP] … and the patient’s decision with respect to the test be documented in the patient’s chart.” Thus, ACOG recommended prenatal screening testing for Down syndrome not for medical reasons, but out of concern for doctors being sued.

In 2007, a select few who serve on ACOG’s practice guidelines committee issued practice bulletins recommending that all women be offered prenatal screening and diagnostic testing for Down syndrome. Another group of select few have been developing newer forms of prenatal testing for Down syndrome, with these tests entering the market last fall. These new tests promise earlier detection of Down syndrome. With more women expected to accept this testing, there will be a corresponding increase in the chance for wrongful birth claims by those who were not offered testing or received incorrect results. That is, depending on where these mothers are located.

Despite the focus of the news coverage, there is a lack of consensus in allowing wrongful birth lawsuits. While a majority of states do allow them, it is a slim majority. Courts recognizing wrongful birth claims have acknowledged their expressly eugenic policy. As the Illinois Supreme Court said: “imposing liability on individual physicians or other health-care providers … vindicates the societal interest in reducing and preventing the incidence of such defects.” Indeed, the California Supreme Court referred to those born with birth defects as a “genetic disaster” to be avoided, considering that “genetic defects represent an increasingly large part of the overall national health care burden.”

On the other hand, it is because of these eugenic implications that other courts have decided not to recognize such claims. As the Michigan Court of Appeals stated in denying a wrongful birth claim, “if one accepts the premise that the birth of one ‘defective’ child should have been prevented, then it is but a short step to accepting the premise that the births of classes of ‘defective’ children should be similarly prevented, not just for the benefit of the parents but also for the benefit of the society as a whole. This is the operating principle of eugenics.”

In most jurisdictions, whether parents can sue for wrongful birth is determined by the court system. This system involves at most a select few trial and appellate judges who get to determine which lives might be considered legal damage, making such determinations dependent on the experiences of these select few with those living a life with a disability. When another governmental branch has considered the issue of wrongful birth, a different outcome occurs.

In denying a wrongful birth claim, one court recognized the limitations of the judicial system:

The General Assembly of North Carolina … is better suited than this Court to address the issues raised by this case. Only that body can provide an appropriate forum for a full and open debate of all of the issues arising from the related theories of “wrongful” birth and “wrongful” life. Unlike courts of law, the General Assembly can address all of the issues at one time and do so without being required to attempt to squeeze its results into the mold of conventional tort concepts which clearly do not fit.

Eleven legislatures have considered the tort of wrongful birth: only two have voted to recognize such claims legislatively, whereas nine have outlawed them.

Greater representation is needed. A handful are deciding the make-up of future generations: the ACOG committee on practice bulletins; judges and jurors; and the sixteen members of the Institutes of Medicine’s committee that recommended that prenatal testing for Down syndrome be free for expectant mothers, which has been adopted by federal regulation. How many of these individuals know someone with Down syndrome or sought out individuals or their support organizations for input before publishing professional guidelines, issuing jury verdicts, and promulgating federal regulations? Probably very few, and yet it is this dearth of experience that has instituted a system of prenatal testing that, as currently practiced, results in more abortions and fewer informed decisions.

For World Down Syndrome Day 2012, I wish I could write more on the gifts that our fellow citizens with Down syndrome give to their families, friends, community and the world. The fact of the matter is, though, that unless regulations and laws are changed, there will be fewer people with Down syndrome to celebrate on future World Down Syndrome Days, making this year the high water mark of lives with Down syndrome. Because these individuals should be celebrated, they deserve more and better representation by those who have sworn oaths to their medical profession to do no harm, and by others who have sworn to provide equal justice for all, and to promote the general welfare to ourselves and our posterity.

Mark W. Leach is an attorney from Louisville, Kentucky, and a Master of Arts in bioethics candidate.

 

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