Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: TUESDAY, August 8, 1995 TAG: 9508080032
SECTION: CURRENT PAGE: NRV-1 EDITION: NEW RIVER VALLEY
SOURCE: ALLISON BLAKE STAFF WRITER
DATELINE: BLACKSBURG LENGTH: Medium
She'll have a better idea if she undergoes genetic testing, a peephole into the future. People who undergo tests can find out if they are disease carriers, or more likely to contract an illness themselves.
But there remains a thorny ethical question: If treatment options are limited, is it helpful to know your genetic truth?
A Virginia Tech medical ethicist who studied cell biology for years had her personal epiphany on the subject in 1980. Now Doris Zallen is writing a book, due to her publisher in December, for regular folks trying to decide if they should be genetically tested.
The working title: "Does It Run in the Family?"
Back in 1980, as a biologist for the University of Rochester, Zallen developed a genetic test for a disorder called myotonic dystrophy. The disease causes muscle functions to deteriorate. When mothers and their fetuses both carry the disease, the child may be born with mental retardation and severe muscle problems.
Zallen's test was administered by giving different family members "marker tests."
As part of her research, Zallen joined patients in the examining room.
"That was the eye opening experience - looking at more than 'my gene' in the test tube," she said.
One family's testing was initiated by a man in his 30s. He wanted to know if he had the muscular ailment - but his cousins weren't interested in knowing the same about themselves. As they saw it, if they had the disease, they'd deal with it. If not, why worry?
Zallen realized then that she'd perfected a double-edged sword. To some, genetic tests proferred great hope. To others, they portended great harm.
In her office at Tech's Lane Hall, she talks now of life and death, and of quality of whatever life is lived. Ultimately, she believes people must make decisions for themselves, with the help of family.
"If you knew ahead of time you had Alzheimer's Disease - is that going to be useful information? It might torment you every time you lose something, or drop your keys," she said.
For the past four years, Zallen has been interviewing people who've decided to go ahead with genetic testing. She asks them why. They have different reasons. Some people want to know if a genetic time bomb ticks inside, and illness lies ahead.
Many women want to know if they carry genes that could produce disease in their babies. Some may opt not to get pregnant. Others have their babies, but prepare for the medical difficulties.
Prognosticators believe the relatively young fields of genetic testing and treatment are destined for common use. As they do, Zallen hopes her book will help people come to their own decisions about whether to be tested.
She remains philosophical on the matter.
"Our genes are not everything. Our genes direct a lot of what we turn out to be. But I've seen people with a particular [damaging] gene and they've done certain things and been creative. They didn't let it become a mark of Cain."
Parents are likely to give in to "genetic guilt" if they pass something to their children; Zallen counsels that they focus on things they control. Genes, they can't.
"We inherit them by chance," she said.
Among our 100,000 genes, all of us have six or eight that are faulty. Will they ever shift into damage mode? Nobody knows, but as genetic testing moves to the fore, more and more we'll have the choice of undergoing tests. Zallen's hoping her book, to be issued next year by Rutgers University Press, will help us decide if we can live with the results.
"I think people have to make judgments for themselves," she said. "All the wisdom does not lie with the experts."
by CNB