Era of genetic testing spawns 'wrongful birth' suits against doctors, hospitals

December 12, 1991|By Kathy Boccella | Kathy Boccella,Knight-Ridder News Service

When Efser Garrison became pregnant at age 39, she did what most older mothers do -- she had a test to learn if she was carrying a baby with Down's syndrome.

But there were problems with the first amniocentesis, and by the time a second one revealed the disorder, it was too late for an abortion. A daughter, Hope, was born mentally retarded.

Her parents claim she was a "wrongful birth."

With the brave new world of genetic testing has come a brash new brand of lawsuit. In wrongful birth cases, parents claim a fetus' genetic problems should have been discovered. They argue that abortion would have been better than the birth of a defective child.

The Garrison case against a hospital outside Newark, Del., set for trial in March, is a watershed legal issue in Delaware. But elsewhere in the last two decades, there have been more than 100 such cases. About as many "wrongful life" lawsuits have been filed. In these, a severely disabled child alleges that to have no life would have been preferable to one filled with pain and suffering.

"There's no question there will be more of these suits," said Lynn Fleisher, a Chicago lawyer with a doctorate in genetics who specializes in health law. "The more [genetic] information that's available, the more cases you're going to have of the failure to give that information to parents."

Hundreds of prenatal screening tests such as amniocentesis, ultrasound and fetal-blood sampling can detect chromosome deficiencies and hereditary diseases in parents and fetuses. Some of the more common disorders that can now be identified are muscular dystrophy, sickle cell anemia and spina bifida.

Wrongful birth and wrongful life suits, although primarily aimed at collecting monetary damages, raise a wide spectrum of ethical and philosophical dilemmas, including:

* Is no life preferable to living with intense pain and suffering?

* Do parents have a right to bring a disabled child into the world and possibly burden society with the cost of care?

* Should doctors and laboratories be held accountable when their errors prevent parents from deciding whether to have a disabled child?

The suits also address a practical matter: the cost of raising a disabled and possibly unwanted child.

"The courts generally have taken the attitude that life with defects has to be better than no life at all," said Aubrey Milunksy, director of the Center for Human Genetics at the Boston University School of Medicine and author of the book "Heredity and Your Family's Health."

Wrongful life and wrongful birth suits are generally tried as negligence cases in which the physician's actions are said to fall below the "standard of care."

Shirley Berman's doctor neglected to tell her about amniocentesis, generally offered to women older than 35. At 38, Ms. Berman gave birth to a daughter with Down's syndrome on Nov. 23, 1974. A few days later, she learned about the test.

"I was enraged, enraged," said Ms. Berman, who lives in Upper Saddle River, N.J., and whose lawsuit was one of the first of the genre. Had she known that her daughter would be disabled, she would have chosen abortion, she said.

"At that point in my life, I had two beautiful and healthy children. I would not have chosen to bring an individual into the world who would not be capable in terms of intelligence and physical abilities. Certainly, I would not care to put upon myself the enormous burdens involved with care-giving."

Ms. Berman's case against her doctor changed the law in New Jersey, which had not recognized the concept of wrongful birth. Today, about 45 states do. New Jersey, Washington and California permit wrongful life actions as well. Although Maryland does not have a specific statute, both kinds of suits can be filed under common law.

Recently, New York recognized what appears to be the first "reverse wrongful birth" case. A woman underwent an abortion after her geneticist misinformed her that the child would be born with severe birth defects.

Because the only "remedy" for many fetal abnormalities is abortion, anti-abortion groups oppose such cases. In Pennsylvania and some other states, abortion opponents succeeded in getting laws passed barring wrongful birth or life suits.

Where such cases are permitted, they "represent the ultimate in discrimination based on disability," said Burke Balch, Pennsylvania legislative director of the National Right to Life Committee. "They say, literally, that it's better to be dead than disabled."

While the Garrisons are continuing to sue for wrongful birth, the Delaware Supreme Court dismissed the wrongful life portion of their complaint, saying, "The question of whether it would have been better for an impaired child to never have lived at all is a philosophical one not amenable to judicial resolution."

Another question remaining in the case is whether being born with Down's syndrome even constitutes an injury, said Mary Pat Trostle, lawyer for the Medical Center of Delaware Inc., owner of Christiana Hospital, where Hope Garrison was born.

"I don't think everybody takes the viewpoint that because a fetus is genetically defective they're going to terminate the pregnancy," she said.

The Bermans, whose daughter is now 17, lost their case after the defense successfully argued that it was not customary in 1974 for doctors to recommend amniocentesis.

Still, said Ms. Berman, "I heard through the grapevine that my obstetrician was telling women about amniocentesis within days after Sharon was born. That's what I call a victory."

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