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The Community Responds to "Wrongful Birth" Lawsuit

Earlier this month in Portland, a jury awarded nearly $3 million to a local couple in a "wrongful birth" lawsuit against Legacy's Center for Maternal-Fetal Medicine.

This story has impacted our community in numerous ways, and sparked a lot of conversation among families and disability organizations, as well as in the broader Portland community. Here are some of the responses we've received from community members and leaders on this controversial legal ruling.

If you'd like to hear more about what we're doing in regards to the effects of this lawsuit and genetic testing, and participate in a positive conversation about community, feel free to call or email us.

We are also very grateful to the families that have trusted us with their personal stories of the the experience of genetic testing and diagnosis.

More reading:

BioEdge: “wrongful birth” of Down syndrome child

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NWDSA on OPB’s “Think Out Loud”

NWDSA Executive Director Angela Jarvis-Holland appeared on OPB’s radio program “Think Out Loud” on World Down Syndrome Day, March 21st, to speak about “living with Down syndrome”. Brian Skotko and self-advocate Karen Gaffney were also on the show.

Click here to Listen to the broadcast and join in the discussion.

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Statement by Michael T Bailey, President of the National Disability Rights Network Board of Directors, regarding the so called ‘wrongful birth’ judgment in Portland, Oregon.

As the father of a young adult with Down syndrome and President of the National Disability Rights Network Board of Directors I condemn this wrongful birth verdict.

The National Disability Rights Network strives to create a society in which people with disabilities are afforded equal opportunity and are able to fully participate by exercising choice. The notion that the birth of a perfectly healthy baby is a subject for the awarding of damages instead of a time for rejoicing is abhorrent to our organization principles.

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A perspective and statement from Disability rights Oregon

Oregon's "Wrongful Birth" Case by Bob Joondeph

A recent $3M jury award begs the question: does Oregon promote disability discrimination?

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 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 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.

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This is an article printed in The Oregonian in 2009 when the story first went public.

Rare prenatal testing case raises ethical questions
By Jerry Casey, The Oregonian
June 13, 2009, 9:45PM

In the months before their daughter was born in 2007, Deborah and Ariel Levy worried the baby might have Down syndrome.

They say a doctor at the Legacy Center for Maternal-Fetal Medicine assured them that a sample of tissue taken from the placenta early in the pregnancy ruled out the developmental disability, despite the results of later testing that showed the fetus might have it.

But within days of the birth of their daughter, the Southwest Portland couple learned the baby did have Down syndrome. Had they known, they say, they would have terminated the pregnancy. Now they're suing in Multnomah County Circuit Court, seeking more than $14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter, who turned 2 this month. The suit also seeks money to cover her life-long living expenses.

The Levys declined to be interviewed. Their attorney, David K. Miller, said the toddler is as dear to them as their two older children but they fear being perceived as "heartless."

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said fewer than 10 such suits -- for disabilities ranging from spina bifida to severe retardation -- are filed in the U.S. each year.

"The reason they're rare is you are forced to take a position that's very awkward," Caplan said. "Parents don't like arguing it, and courts don't like hearing it."

Parents must be willing to declare "we feel burdened to have this child," Caplan said.

And in order for the suits to succeed, courts must be willing to rule that "it's better not to exist and give damages for having to exist," Caplan said.

Miller said his clients are "committed to the best possible life for their daughter." He said one of their role models is Karen Gaffney, a 31-year-old Portland woman with Down syndrome who earned a regular high-school diploma and an associate of science degree from Portland Community College and travels the nation as a renowned speaker.

"They feel very strongly that what happened to them was wrong," Miller said. "They were given incorrect information, and their lives have changed because of it."

The 1973 decision Roe v. Wade by the U.S. Supreme Court opened the door for such suits because parents generally must claim that they would have aborted the fetus.

The "wrongful birth" and "wrongful life" lawsuits are controversial. High courts in roughly two-thirds of states have allowed the suits. Some states -- including Michigan, Georgia and Utah -- have banned them.

One director of a national Catholic organization praised the prohibition of such suits, saying "it is never wrongful for a baby to be born."

But others say the bans strip families of the right to seek compensation for medical malpractice. Susan Wolf, a professor of law and medicine at the University of Minnesota, said suing for a botched prenatal test is no different than suing for a botched knee surgery. Answering the essential question, if a child would have been better off never being born, is a tough one, she said.

Help for parents
"So many courts have resisted compensating the child directly," Wolf said. "But most of them have found a way to compensate the parents."

In 1994, the Oregon Supreme Court ruled that two Eugene parents could sue for the costs of raising their child and for providing a college education after they claimed that a doctor failed to perform a requested tubal ligation during the C-section delivery of the mother's second child. Jonni Zehr found out she was pregnant with a third child seven months later.

The number of wrongful birth lawsuits is expected to grow as an increasing number of women give birth over age 35, when the probability of chromosomal birth abnormalities such as Down syndrome rises. Rapidly advancing technology, especially in the past decade, means prenatal tests can now identify hundreds of conditions although the vast majority of these tests aren't given to women who aren't deemed a specific risk.

In some cases, testing allows doctors to treat conditions before birth. In other cases, test results give parents time to prepare for the challenges of raising a special-needs child. It also provides information that prompts some parents to terminate the pregnancies.

Ethical questions
The decision to get an abortion, experts say, is less difficult for many parents when the disability is a condition such as Tay-Sachs disease, which in its most common form kills most children before age 4. Ethicists wonder about the morality of such a decision when the condition is deafness, blindness, a cleft lip, obesity or a propensity to develop breast cancer or have a heart attack later in life -- all of which can be identified in the womb.

One decade-long study referenced in a policy brief by the Washington State Department of Health found that 28 percent of women who knew they'd give birth to a baby with a cleft lip or mouth deformity chose to end their pregnancies.

Increasing numbers of pregnancies are being screened for Down syndrome. Doctors formerly reserved the test largely for women age 35 and older, but in 2007, the American College of Obstetricians and Gynecologists recommended that all pregnant women be offered the screenings. Several studies show 90 percent or more of women who discover they'll give birth to a baby with Down syndrome choose to have an abortion.

Deborah Levy, who was 34 when she was pregnant with her third child, was given a chorionic villus sampling (CVS) during her first trimester, and the results came back negative for Down syndrome.

The couple's suit claims that they were repeatedly told that the test had "definitively ruled out" Down syndrome. The test is reported to be more than 99 percent accurate. The suit contends that the clinic bungled the test.

A Legacy spokeswoman declined to comment because of the litigation.

In addition to seeking money for the child's future care, the couple ask compensation for the depression and emotional distress Deborah Levy has suffered and for her inability to go back to work as a dental hygienist. Ariel Levy, a civil engineer, also seeks compensation for the effect his daughter has had on his relationship with his wife.

Society offers help
The Northwest Down Syndrome Association in Portland encourages doctors to send parents expecting a baby with Down syndrome to her organization, said Executive Director Angela Jarvis-Holland, because it is equipped to answer questions about what life will be like.

"Because what constitutes a good life?" Jarvis-Holland said. "I don't think doctors can answer that in a two-minute conversation."

Prenatal tests can't discern the severity of Down syndrome, and it varies widely by individual. Jarvis-Holland said involved parents with the right resources can greatly improve their child's development.

She said the ability to test for a growing array of conditions means many more women will be faced with the question of whether they want to be tested for everything from autism to an alcoholism gene (tests are in the works), and what they'll do if the results come back positive.

"Down syndrome is really the canary in the coal mine," Jarvis-Holland said. "It will be everybody's question before we know it."

Jarvis-Holland, who has a 10-year-old son with Down syndrome, worries about what she calls the "tyranny of perfection" if parents one day will be able to test for virtually every conceivable disadvantage facing their fetus.

"If you keep growing the list, where and when do we grow uncomfortable about that list?" Jarvis-Holland said. "I'm not sure where this is taking us."

--Aimee Green;

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