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