Earlier this month, a Portland jury awarded nearly $3 million to a couple who claimed that they were damaged by the negligence of Legacy's Center for Maternal-Fetal Medicine. The couple, who were expecting a baby, had gone to Legacy for a prenatal test called chorionic villus sampling (CVS). CVS is supposed to determine if a fetus has a normal chromosomal profile. The test results showed that all was "normal" and yet, months later, the couple gave birth to a baby with Down syndrome. According to the Oregonian newspaper, the couple sued to recover the "estimated extra lifetime costs of caring for a child with Down syndrome."

The legal argument went like this: the couple had depended upon Legacy to perform competent testing. If they had known the fetus had Down syndrome, they would have chosen to abort (like 89% of other pregnant women who receive this information.) Having foregone abortion in reliance upon the test results, the couple had the baby and now expected a significantly greater financial burden to raise and care for their child.

For many parents of children with Down syndrome, this verdict was a slap in the face. It is bad enough that so many expectant parents choose to abort when learning that they will have a child with disabilities. But for society, a court and a jury to award damages to a couple who have given birth to a child who is entitled to the same love, support and opportunity to reach his or her potential as any other person, seems insulting and nonsensical.  

Viewed from a public policy perspective, this case says that a parent who chooses not to have prenatal screening or chooses to have a child with Down syndrome is expected to carry most of the additional financial load of raising the child with, in certain cases, meager public assistance offered by the state of Oregon. A parent, however, who chooses to have testing and is willing to abort upon receipt of the results, shall be held financially harmless.

Ten years ago, in a ceremony at the Oregon state capitol, Gov. John Kitzhaber apologized for the state's past policy of forcibly sterilizing people who were in state care. He was the second governor in the nation to formally recognize that this practice was wrong. (Oregon had been one of 33 states with forced sterilization laws.) Kitzhaber told a packed room of about 80 survivors and their supporters: “The time has come to apologize for misdeeds that resulted from widespread misconceptions, from ignorance and from bigotry. To those who suffered, I say the people of Oregon are sorry, and our hearts are heavy for the pain that you endured.”

At least 2,648 people were sterilized in Oregon between 1917 and 1981, under the banner of "eugenics" which sought to breed a better human race by preventing those with traits they deemed undesirable from having children. The practice targeted a broad range of people including individuals with disabilities, criminals, promiscuous girls and homosexuals.

Sterilizations were legally authorized at Fairview Training Center, then called the State Institution for the Feeble-Minded, under a law passed by the Oregon Legislature which created the State Board of Eugenics in 1923. The Board of Eugenics was abolished in 1983.  That's right, less than 30 years ago.

Today, we do not summarily castrate people with Down syndrome.  Our policies, instead, encourage couples to forestall these individuals' existence altogether.  

I am not writing this to challenge a woman's constitutional right to control her own body. But Disability Rights Oregon is dedicated to protecting the civil and human rights of individuals with disabilities. We must ask these profound questions: Who can legitimately place a higher value on one human life over another? What assumptions does a person make when deciding that a life is inferior? What role does the government (including the courts) have in encouraging, discouraging or even just recognizing the practice of disability discrimination, particularly when life is at stake?  

Governor Kitzhaber is now back in office. He has put a halt to state executions of those convicted of aggravated murder. Perhaps it's time to re-evaluate how Oregon values the lives of individuals with disabilities.

The headline in the June 14 Oregonian reads: "Prenatal testing goes to court."  The accompanying article describes a Portland couple suing a doctor for $14 million to cover the costs of raising their daughter, who was born in 2007 with Down syndrome.  The suit alleges that the doctor assured the couple their child would not have the disability. The couple says that had they known of the condition, they would have chosen abortion. Read more about the suit on OregonLive. 

Similar lawsuits -- called “wrongful birth” and “wrongful life” cases -- have raised complex legal, ethical and moral issues across the country.  Some would say that a botched prenatal test is like any other mishandled medical procedure and should be treated as medical malpractice.  Others would ask if a person can truly be damaged because she is alive.

One sentence in the article particularly grabbed my attention:  “Several studies show 90% or more of women who discover they’ll give birth to a baby with Down syndrome choose to have an abortion.”  Angela Jarvis-Holland of the Northwest Down Syndrome Association comments that this seems to reflect a “tyranny of perfection.”  As medical science advances, parents will be able to test for “virtually every conceivable disadvantage facing their fetus.”   Will parents of the future sue their doctors if their child does not have the desired height, athletic ability or IQ? 

 An approach to addressing these issues is contained in a section of the Pregnant Women Support Act (S.270), now pending in the U.S. Senate.   It would require health care providers to provide information to parents who receive a positive test result from a prenatal test for Down syndrome.  That information is to include written, up-to-date, scientific information about the syndrome and referral to support services including a hot-line, website, peer-supports and national registry of adoption options.

One’s view of this proposal is bound to be highly affected by one’s position in the larger abortion debate.  But if I can gingerly sidestep that issue, I would like to raise the relationship of  “wrongful life” cases to health care reform.

 I wonder: What if everyone had insurance that covered the additional costs of raising a child with disabilities?  What if there were no fiscal incentives to abort a child with Down syndrome? It would not affect the choice of a person who only wants to carry a child that has a good shot at Harvard or the Trail Blazers' roster; but it could save us from putting a negative price on life.