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Gene map may force tough calls
The Dallas Morning News, Sunday, July 2, 2000

Gene map may force tough calls

Discovery challenges view of abnormalities

By Jeffrey Weiss / The Dallas Morning News

Grant Laird is deaf. Members of his family going back three generations are also deaf. Mr. Laird has a powerful loyalty to deaf culture, the caring and creative parallel world of the hearing-impaired. But what if a magic wand could have given him normal hearing at birth?

"I wouldn't trade anything to hear again," the webmaster of the DFW Deaf Web site wrote in an e-mail interview. "But in deep somewhere in my heart, I would love to hear. It's strange, isn't it?"

Will Hall is the vice president of convention news for the Southern Baptist Convention. He's also the father of Jacob, a 2-year-old boy with Down syndrome. If Mr. Hall could transform his son's genetic code with a wave, would he?

"Why would we choose something so beautiful to be different than the special being that he is?" he asked. Like many members of families of those with Down syndrome, Mr. Hall says his son "has a special love he shares with everyone in the room. You can just sense it."

Culture or cure, compassion or correction - these tradeoffs are clouds behind the silver lining of new discoveries about human genetics. Doctors, religious leaders and people whose lives are directly touched by shifts in the genetic code have been forced to confront these choices with a new urgency.

Last week, two teams of scientists declared that they had assembled the first rough draft of the entire human genome the instructions that create hands and feet, eyes and ears and all of the differences between one person and another.

Mr. Laird, 30, lives with one of those differences hereditary deafness. Genetic shifts may create or contribute to a host of other conditions and attributes: Down syndrome, congenital obesity, Lou Gehrig's disease, sexual orientation, dwarfism.

One day, doctors may be able to fix a nonstandard genetic code with the ease that today's physicians set a broken bone. But at what cost? History may offer some answers.

When Alexander Graham Bell invented the telephone, he was actually trying to create a device to help hearing-impaired people. What if deafness had been much less common at the time? And what contributions might the unique perspective of the deaf offer to the larger culture in the future? 

"I certainly understand that there's a solidarity among people who are hearing impaired, and there is an expressiveness in their language and their joint activities that speaking people very often lack," said Dr. LeRoy Walters, director of the Kennedy Institute of Ethics at Georgetown University.

Ethical problems

Dr. Walters chaired a committee commissioned by the National Institutes of Heath and the Department of Energy to identify ethical problems posed by the identification of the human genome. For him, the benefits of hearing outweigh the benefits of deaf culture.

When Lou Gehrig strode to the microphone of Yankee Stadium in 1939 to tell the world the disease that would forevermore bear his name had ended his career, he created an indelible example of courage: "I consider myself the luckiest man on the face of the Earth."

More recently, sociology professor Morrie Schwartz offered a different example of courage as amyotrophic lateral sclerosis sapped his strength. His story was told on ABC's Nightline and recorded in the book Tuesdays With Morrie.

If ALS had been eliminated, these opportunities for education and compassion would have vanished along with myriad painful and prolonged deaths.

Down syndrome is caused by changes in one particular chromosome - a microscopic bit of the genetic blueprint. The result is mild to severe mental impairment, internal problems such as heart disease and a distinctive set of facial features. There's also that cheerfulness, almost an aura of goodness, described by many who know people with Down syndrome. And there are the challenges and tragedies faced by their families - challenges that help shape those lives.

Linda Daugherty, the resident playwright of the Dallas Children's Theater, wrote a play that was produced this year called Bless Cricket, Crest Toothpaste and Tommy Tune. It's loosely based on her childhood growing up with a brother who had Down syndrome.

"Do I wish I'd missed that Down syndrome? Yes and no," she said. "I learned great lessons. But would I like to have a grown-up brother with a family? Would I like life to be perfect? You better believe it."

Meaning of suffering

The value of suffering is a question that many religious traditions grapple with.

From a Jewish standpoint, God wants people to reduce suffering, said Rabbi Howard Wolk, leader of the Orthodox Congregation Shaare-Tefilla and an ethics adviser to several Dallas-area hospitals. A technology that could eliminate such conditions as Down syndrome and deafness would be welcomed, he said.

"From a Jewish perspective, a child who is healthy can fulfill more mitzvot [God's commandments]," he said.

Suffering is central to Buddhist thought, said Michael Trigilio, program coordinator at Community of Mindful Living in Berkeley, Calif., and an ordained member of the Zen Buddhist Order of Interbeing. The first "noble truth" of Buddhism is that suffering exists, the second is that it has a purpose, the third is that suffering is caused by thwarted desires, and the fourth is that there is a spiritual way to relieve suffering, he said. 

Having said that, Buddhism would not oppose technology that can reduce some physical suffering, he said.

"Even if all the illnesses in the world were cured, would there not be opportunities for compassion?" Mr. Trigilio asked. "It's a question of how we approach suffering in our lives so we can transform it to compassion, joy and peace."

Christianity has an example of suffering at its center: the suffering of Jesus on the cross, said the Rev. James Wiseman, former head of the theology department at Catholic University in Washington, D.C. The example of Jesus, who the Gospels say asked God, "If it be possible, let this cup pass from me," but nonetheless accepted God's will, offers an example for others, Father Wiseman said.

"On the other hand, I'm sure the church would never suggest it's great to suffer," he said. "Jesus himself healed people who were diseased."

Tricky balance

The tricky balance between the desires to heal illness and preserve diversity reflects a duality at the heart of reality for followers of the Muskogee Creek tradition, said Sakim, maker of medicine for the Pine Arbor Tribal Town in north Florida.

How to deal with genetic abnormalities is not an academic question for Sakim. Several children with genetic challenges have been born into his small American Indian community. For him, the question of whether to wave the imaginary magic wand would depend on the people involved.

"What kind of a mother is she going to be? Is her life in such shape that the Down syndrome is a gift to her to rebuild her life in a better manner?" he said.

His culture prizes diversity of all kinds, he said. Many of the Muskogee teaching tales, his faith's equivalent of sacred texts, involve a variety of human and animal characters. Often a seemingly obscure character - an ant, mouse or rabbit - saves the day.

"These stories teach us it's not always the big strong brute or the perfect warrior who succeeds," Sakim said.

Value of diversity

Biology offers a similar lesson about the value of diversity, said Martin Kreitman, ecology and evolution professor at the University of Chicago who co-authored a paper in this month's Nature Genetics journal. He argues that genetic abnormalities that seem harmful today might have been valuable in the past - and might be valuable again down the evolutionary road.

Mutations responsible for iron overload disease may have offered an advantage to people forced to eat an iron-poor diet. Genetic links to susceptibility to alcoholism or drug abuse may have contributed to creative risk-taking. And there has been speculation, he writes, that Alber Einstein may have had some characteristics of autism.

Tradeoffs

"Society should just be aware of the tradeoffs it's making and then try to act in some intelligent way," Dr. Kreitman said.

Individuals, not society, need to make these decisions, said Mr. Hall of the Southern Baptist Convention. He and his family take their cues from what they believe God intends for them.

"When we have a burden on us, God gives us strength and a change of heart. He blesses us with love and sends those to encourage us," Mr. Hall said. "That's what we would miss out on if our lives were perfect."

Staff writer Berta Delgado contributed to this report.

(c) 2000 The Dallas Morning News

 

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