Tuesday, June 27, 2000

Genetic breakthrough poses ethical dilemmas

By Richelle Thompson
The Cincinnati Enquirer

Suzanne and Andy Hesselbrock, who lost their first child to a rare disease, had genetic testing on their unborn daughter.
(Michael Snyder photo)
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        Suzanne Hesselbrock always said she would never be able to have an abortion. That was before her blond, blue-eyed son died in her arms at age 2 years, 9 months and five days.

        When Mrs. Hesselbrock became pregnant again last fall, she and her husband, Andy, decided to have genetic testing done to determine whether their unborn child had Tay-Sachs, a rare, fatal genetic disease that killed their son. If the test was positive, the Hesselbrocks likely would have aborted.

        “No matter what, a (Tay-Sachs) baby is going to die,” said Mrs. Hesselbrock, 26, of Hamilton Township in Warren County. “The choice is whether you come to know it and watch it suffer or you give it back to God before it ever has a chance to suffer.”

Andy Hesselbrock with his son Kyle before he died in 1998.
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        The Hesselbrocks didn't have to make the heart-wrenching decision. Halia Kyle Catherine is expected to arrive Aug. 25. She does not have Tay-Sachs.

        But the Hesselbrocks' story shows that unraveling the genetic code creates a whole new tangle of ethical dilemmas.

        As science advances, parents may not only be able to test for fatal diseases such as Tay-Sachs but also whether their unborn child has a predilection for alcoholism or heart disease. Pinpointing “flawed genes” could lead to a new sort of discrimination where insurance companies deny coverage, and employers screen candidates based on their genetic makeup.

        It also could widen the divide between rich and poor, with the wealthy able to afford expensive genetic alterations while the impoverished continue to suffer.

  • What happened?
  Two teams of scientists announced Monday they have completed a rough draft of the human genetic code — the basic blueprint of human life — in what is potentially one of history's greatest medical breakthroughs.
  • What does it mean?
  Experts predict the map will lead to many improved treatments for a wide range of diseases. However, some ethicists worry a Pandora's box has been opened.
  • Infographic: The human genome
  • Continuing coverage from Associated Press
        Make no mistake; much good will come from this discovery, said the Rev. Robert Baumiller, a Jesuit priest and Xavier University's associate dean of health education. It will save people's lives. It will give them comfort and hope. It will enable doctors to offer tailor-made drugs to combat specific diseases.

        Mapping the genetic code is a tremendous scientific accomplishment, ranking with the ability to control the atom, he said.

        But the world should move slowly.

        “Knowledge is not unethical; the use of knowledge can be,” said Father Baumiller, who holds a doctorate in genetics and is a senior research fellow of ethics at the Kennedy Institute in Washington, D.C.

        After all, the world doesn't have a good track record of accepting genetic differences, he said. Just consider the sterilization of the mentally ill in the United States in the early part of the century, Hitler's attempted genocide of Jews and recent ethnic cleansing in the former Yugoslavia.

        “Anytime you take something that has not been in the control of man, you worry about what we might do to adjust what nature would normally have had happen,” he said.

        One danger of genetic testing is the implication some people are less worthy, less human, less beloved, said Dan Andriacco, spokes man for the Archdiocese of Cincinnati.

        “Are you saying that God made a mistake and we're going to fix it?” he asked. The Catholic church emphasizes the value of each individual, regardless of ability, disease or genetic makeup.

        Furthermore, doesn't variety spice up life?

        “I don't know if the world would be better off if Bee thoven hadn't been deaf or Helen Keller hadn't been blind and deaf,” Mr. Andriacco said. “One of the great concerns among ethicists is that just because we have the ability to do this, does that mean we must do it without thinking, "Is it a good thing or a helpful thing to the human family?'”

        The Hesselbrocks asked themselves that question. They can anticipate the dark side of genetic testing, such as the parents who want to pick the sex or eye color. That's playing God, Mrs. Hesselbrock said.

        But genetic testing for a devastating, fatal disease is a blessing of technology.

        “To me, you're sparing the child (from suffering), from all that you've already seen one child go through,” she said.

        Mrs. Hesselbrock is painting a mural of teddy bears on the wall of her daughter's nursery. The child may have other problems, like any child, but chances are she'll live past the age of 5.

        And that's all the Hesselbrocks wanted from the genetic testing: to know if their child had a chance.

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