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.
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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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