After Bobby Ginther, 10, finished dinner Thursday at his home in Burnsville, his dad, John, discussed Bobby's homework. (JEAN PIERI, Pioneer Press)

At his kitchen table, John Ginther flips through photos of his son, Bobby.

Here is Bobby at a wedding, he says. Here's Bobby at a walk-a-thon, Bobby in a water park, Bobby with his sister.

The pictures show a boy with Down syndrome, doing things every 10-year-old boy does. It pains Ginther to think of a future without more children like Bobby - a future without Down syndrome.

"Look at these pictures, and tell me it's a bad thing," says Ginther defiantly. "It is not a disease. It should not be eliminated."

With those soft-spoken words, Ginther thrust himself into the medical debate of the future.

Thanks to advances in genetic testing and prenatal screening, science is winning the war against ailments that have plagued mankind for centuries.

But mankind may not want the victories.

As scientific breakthroughs tumble out of America's research labs, resistance to medical advances is gathering momentum, said Steven Miles, a medical ethics expert at the University of Minnesota and past president of the American Society for Bioethics and Humanities.

Increasingly, doctors confront angry groups armed with arguments about diversity, freedom, human value, love of children and definitions of disease.

"You are targeting people with Down syndrome. Why are you doing this to a particular class of people?" said Kathleen Forney, the director of the Down Syndrome Association of Minnesota, who has a 10-year-old son with Down syndrome.

Miles said doctors now scan fetuses for a broad range of disabilities, including blindness and congenital disabilities such as one that results in a baby without a brain. Tests for other conditions are being developed rapidly - leaving pregnant women with ever-more-difficult choices.

"What happens when we get a test for Alzheimer's?" Miles asked.

MORE SCREENING?

For Down syndrome - the No. 1 cause of mental retardation - the questions are no longer hypothetical.

It occurs at the moment of conception, when the fetus is given three copies of chromosome 21, instead of the usual two. It is not inherited but is an irreversible change in a person's genetic structure.

Dozens of organizations are arguing that Down syndrome is a condition to be accepted, not a disease to be cured.

Lisa Schiltz, an associate professor of law at St. Thomas University, has a 12-year-old son with Down syndrome.

"There are things my son adds to the world that we will lose irretrievably if we do not have more people in the world like him," Schiltz said

"Do we want a world with no people in it who challenge our strongest notions of diversity?"

Last week, the Down Syndrome Association of Minnesota was preparing letters to be sent to 2,500 doctors - for the purpose of discouraging abortions when a Down syndrome diagnosis is made.

The screenings undercut what parents tell their children: They are normal and loveable. It's a joy to raise them, say the parents, even if it is difficult.

Statistics show how difficult it is.

Extra costs over a lifetime? About $750,000. Unemployment rate among adults? 85 percent. Percent born with defective hearts? 40. Life expectancy? 55. Percent unable to walk or talk? Three to 12.

It raises the question: Should doctors use genetic testing to reduce the number of children born with Down syndrome? Autism? Spina bifida? Or should those numbers be maintained because of the ramifications of prenatal testing?

To most scientists, the question of not battling Down syndrome is crazy-talk.

Eradicating ailments - from deafness to polio to AIDS - is the very heart of what medicine seeks to do. In the past, researchers who cured or eased human suffering in any form were proclaimed heroes.

So, in January, doctors didn't anticipate an outcry against a call for more Down syndrome screening.

The American College of Obstetricians and Gynecologists said its members should offer Down syndrome screening to all women - not just those older than 35, as previously recommended.

College spokeswoman Dr. Deb Driscoll said combinations of new tests are able to identify a fetus with Down syndrome 95 percent of the time. After that, women can get an amniocentesis for a diagnosis.

As a toddler in 2000, Bobby was on the cover of a Down Syndrome Association calendar. "Down syndrome brings more to society than it takes away," John Ginther says. (JEAN PIERI, Pioneer Press)

The amniocentesis is 100 percent accurate, but carries a small risk of miscarriage.

Driscoll applauded people who rise to the task of raising a child who has disabilities, but she said others find it a tremendous hardship. Some don't have the money.

Whatever their reasons, about 85 percent of women faced with a Down diagnosis end their pregnancies, Driscoll said.

"It's a personal decision," Driscoll said. "Screening guidelines are not meant to be an attack on individuals or families."

COUNTERATTACK

But to many parents, an attack is exactly what it is.

A call to arms was issued in January by George Will, a nationally syndicated columnist whose son Jon has Down syndrome.

In a column headlined, "What did Jon do?" he lashed out against screening: "So diagnosing Down syndrome can have only the purpose of enabling - and, in a clinically neutral way, of encouraging - parents to choose to reject people like Jon as unworthy of life."

Schiltz, the St. Thomas associate professor, joined the argument. In a July essay in Business Week, she said she had been called a "genetic outlaw" for giving birth to a son with Down syndrome.

She wrote that she was worried about a new technique called Preimplantation Genetic Haplotyping, which has the potential to screen in-vitro embryos for 6,000 inherited diseases.

"I can't help but see 6,000 new reasons that parents will be branded as sinners or made to feel socially irresponsible for bringing their children into this world," she wrote.

In an interview last week, she said: "There is nothing wrong with testing. But it can be so dangerous if given in the wrong context.

"I think it's a good thing if we have more people who don't meet ideals of physical or mental perfection."

Others have framed the issue as a matter of eugenics - manipulating genes to produce children with a certain intelligence, height or even eye color.

"It should give us pause when any characteristic is singled out. What is next? Sex-screening selection?" said Jon Colman, chief operating officer of the National Down Syndrome Society. "The founding ideals of this country are at odds with that."

But Miles, the medical ethics expert, scoffed at that comparison.

"To compare this to eye color trivializes the nature of this condition," he said.

"Half these kids have some kind of heart defect. Ten percent have their intestines blocked. They have serious eye problems, hearing problems, thyroid problems."

They are mentally disabled, to varying degrees.

Some are almost indistinguishable from their peers, graduating from high school, getting jobs and having families of their own. About 80 percent have mental impairment from moderate to profound; some will never walk or talk.

But most of these disabilities should be considered within the normal range, Forney said. "At the Pioneer Press, you certainly have people of different IQs," she said.

RAISING THE DISABLED

Miles said the screening shouldn't become a referendum on how much parents love their children - but what is best for children, parents and society.

He knows firsthand the difficulties of raising a disabled child - he and his wife adopted a girl with fetal alcohol syndrome.

"We could afford to take on a disabled kid. I am a doctor," he said.

"But I think there is a measure of hypocrisy saying, 'You have to carry these children to term,' unless you are willing to serve as foster parents for the unwanted children," Miles said.

The Down association's Forney said the upcoming letter to doctors will encourage them to put pregnant women in touch with the association. Then, Forney said, they will be given information and encouraged to visit homes with children who have Down syndrome - to show women that raising a child with Down syndrome is worthwhile.

"This is not something to be considered horrible for families," Forney said.

The only ethical absolute for Miles comes with the idea of censorship - deliberately keeping screening information from pregnant women.

"It is absolutely wrong to say to any woman: 'We have a way for you to know in advance, but we are not going to tell you about it,' " he said.

Underlying the arguments of parents is a reality that science can't address - the love they feel for their children.

Seeing Ginther in his Burnsville home Thursday evening, it was obvious he adores Bobby, who was typing a report on a book titled "Volcanoes."

"Down syndrome brings more to society than it takes away," Ginther said. "No human should be shut down or eliminated (if they don't have) blond hair or blue eyes or whatever is in fashion."

He admitted there have been rough times. During his first year of life, Bobby had to be taken to the doctor "several times a week" for various health problems, Ginther said.

Schiltz, too, said the early years are the worst, especially when the doctors break the news to parents.

"It is very, very sad when it happens," she said. "But there is something about that sadness. It stretches your heart and emotions. You find yourself capable of feeling deeper happiness."

Miles recalled his memories of raising a disabled daughter.

"Yeah, I learned a lot about being depressed," Miles said, "but I wouldn't wish it on anyone."

Bob Shaw can be reached at bshaw@pioneerpress.com or 651-228-5433.

1ST

Down syndrome's rank as cause of mental retardation

85%

of people with the syndrome are unemployed as adults

40%

are born with birth defects

55

life expectancy today

$750,000

estimated extra costs per lifetime

85%

of women end a pregnancy after a Down syndrome diagnosis

800

births of children without Down syndrome for every one with the syndrome

350,000

U.S. Down syndrome population in 2006