Snapshots

COMMON SENSE AND UNCOMMON FEARS
Parents want reasons for childhood cancer, property owners
fear reasons behind the move to protect a river

Whom to believe? A couple of long-running news events raise that question. Four families asked the
legal system to confirm that toxic coal tar is to blame for their community's "cancer cluster," something
science has been unable to verify. But while lawyers and doctors clash in court, the case is challenging the
way the media cover issues when the public and experts disagree. Meanwhile, a federal effort to save the
Illinois River has roused suspicions among property owners. The idea certainly sounds well-intentioned,
but some activists call the Heritage Rivers Initiative a scheme to control land use through aerial
photography and satellite surveillance. In an effort to soothe such worries, President Bill Clinton says
the program will have "no federal mandates, no regulations, no restrictions on property holders' rights."
Still, there are doubters.

TRUST IN SCIENCE

Bridging the gulf
between evidence and emotion

by Kevin McDermott

In the summer of 1990, a group of Taylorville parents went public with a frightening theory: A toxic waste site on the south side of that small central Illinois town had caused three infants to develop neuroblastoma, a rare pediatric cancer of the adrenal glands and nervous system that normally strikes fewer than one of 100,000 children annually. Eight years and three additional cancer victims later, the theory has moved from the laboratory to the courtroom.

Four families have asked the legal system to confirm that carcinogenic coal tar is to blame for their community's "cancer cluster," something medical science has been unable to verify. A decision on the suit is expected in the next couplemof months.

But while lawyers and doctors continue to clash in court, the case is challenging the way the media cover issues when the public and the experts disagree. As one frustrated state agency scientist asked reporters during a Springfield panel discussion not long after the neuroblastoma controversy broke: "Why do you guys always quote the hysterical mother?"

Illustrations by Mike Cramer

At the center of the controversy is a former coal gasification plant in a town. of little more than 11,400 residents. The factory, owned by Central Illinois Public Service Co., produced gas from coal around the turn of the century, along with the toxic by-product coal tar. CIPS closed the site in 1932, but in the mid-1980s, a contractor accidentally punctured an underground tank, releasing some of the stored substance into the ground. Under an agreement with the Illinois Environmental Protection Agency, CIPS removed 9,000 cubic yards of coal tar and contaminated dirt, but plaintiffs in the suit — parents of four of the six known cancer victims — allege toxins were released into the environment during the cleanup. At the heart of the story, though, is this question: Should science be trusted when it draws conclusions that seem to defy common sense? After reports of the first three cases of neuroblastoma were made

28 / March 1998 Illinois Issues

public, the Illinois Department of Public Health launched a study, concluding in 1991 that Taylorville's "cancer cluster," while unusual, can't be linked to toxic waste or any other causes. Today, the list of known neuroblastoma cases in and around Taylorville totals six, twice the number that had alarmed state officials enough to launch their study. And two of the young victims have died.

Yet most experts argue there is still no scientific reason to believe the town is plagued by anything more than tragic coincidence. Furious parents counter that mere coincidence can't explain why three children simultaneously developed a cancer that, statistically, shouldn't appear in a town the size of Taylorville more than once in a generation.

"I want whatever is out there to be taken care of so no one else has to go through this," said Tammy Donaldson, the mother of 9-year-old neuroblastoma victim Zachary Donaldson, as she went into court one morning last December. "I just want to know the truth."

That won't be easy. With no conclusive proof either way, both sides in the trial have relied on conflicting testimony as to whether the toxic waste site could have caused the children's cancer. The defendants — CIPS and two contractors involved in the cleanup project — maintain that, although coal tar is a known carcinogen, it hasn't been proven to cause neuroblastoma. State health officials, doctors and scientists generally agree.

Media coverage of the case, laced from the beginning with pictures of sick children and the trembling voices of their parents, has led to complaints from the scientific community that reporters are too quick to give credence to the uninformed fears of laypeople, while downplaying scientific sources that would cast doubt on those fears. "[Reporters] concentrate on the families and children, on how terrible it is, and I would, too. ... But some of the homework hasn't been done," says state Public Health spokesman Tom Schafer. He notes that those who conclude the toxins caused the cancer are making a claim that the best minds of science have been unable to prove, despite years of research. "The frustration [among scientists]," says Schafer, "is that nobody in the world knows what the answer is, as far as neuroblastoma [goes]."

Reporters who have covered the long-running story argue that parents have as much right as scientists to weigh in on that question.

"When I'm talking to a parent who has a sick child, I'm not trying to establish some link" between toxins and cancer, says Tony Cappasso, who has covered the Taylorville trial for the Springfield State Journal- Register. "I'm trying to get the parent to tell my readers why she's suing. It doesn't mean the reporter endorses the argument."

Perhaps more to the point is the tone of uncertainty in scientific pronouncements on coal tar and neuroblastoma, a tone that gnaws at laypeople.

Scientists don't outright discount that coal tar or other toxins could cause the cancer; rather, they say, no cause has been proven — the same distinction scientists of 50 years ago would have drawn on the issue of, say, cigarettes and lung cancer.

It's a distinction that speaks to the gulf between scientists, who necessarily require all the evidence to be in before drawing any conclusions, and the public, which tends to think in worst-case scenarios when it comes to toxic waste and pediatric cancers. Lack of proof isn't proof to a scientist, but it can scare the hell out of a parent — sometimes rightly so.

"Scientists work in a much different world, a controlled, lab-type reality," says Rob Moore of the Central States Education Center, a Champaign-based environmental group rooted in science and advocacy. "They're not supposed to bring in issues of emotionalism and loss. They go to great lengths to remove themselves from the emotions."

What is certain is that emotions, including the shrill voices of "hysterical mothers," have brought more scientific scrutiny to bear on Taylorville's "cancer cluster" — four studies so far. If that attention contributes to an understanding of the disease, it could fairly be said that the hysteria scientists have dismissed has helped them to do their jobs.

"Does public outcry drive scientific conclusions? I would hope not," says Moore. "Should it drive scientific inquiry? Absolutely. There's no way around that."

Kevin McDermott is Statehouse bureau chief for the St. Louis Post-Dispatch. He spent years covering the "cancer cluster" issue for The State Journal-Register of Springfield.

TRUST IN GOVERNMENT

Saving a river or scheming to control land?

by Adriana Colindres

The idea certainly sounds well- intentioned: Get the federal government to select the ailing Illinois River for the new American Heritage Rivers Initiative, a program designed to channel money and technical know-how to 10 rivers that demonstrate a broad range of natural, economic, scenic, historic, cultural and recreational features. Then, take advantage of that program, and others, to nurse the silt-choked Illinois back to health.

But the Heritage Rivers Initiative, proposed by President Bill Clinton in his 1997 State of the Union address, has become a punching bag, with critics expressing skepticism about what the initiative really means and whether it will threaten the rights of property owners.

Liberty Matters, a nonprofit group formed by land rights organizations

Illinois Issues March 1998 / 29

in Idaho, New York and Texas, has called the initiative a federal scheme to control land use through "aerial photography and satellite surveillance." The plan "has demonstrated the imperial intentions of the Clinton Administration," Liberty Matters announced on its Internet site.

Illustration by Mike Cramer

In an effort to soothe such worries, President Clinton said last September the initiative will have "no federal mandates, no regulations, no restrictions on property holders' rights." Still, there are doubters. One is John Robb, a western Illinois farmer who has been vocal in urging citizens and local governmental bodies to oppose efforts to include the Illinois River in the initiative. Meanwhile, at least a half-dozen Illinois counties, as well as the Illinois Farm Bureau, have passed resolutions opposing the program. Jon Scholl, director of public policy for the Farm Bureau, says his organization's members have a "fairly strong mistrust" of the federal government, much of it stemming from the response to the flooding along the state's river system in 1993.

Robb cites two main objections to the river initiative. First, the program is being coordinated by the Council on Environmental Quality, an arm of the White House that Robb says has an "environmental bias." Second, he adds, property owners are unclear about the implications of the program.

"We don't know what kind of enforcement regulations they're going to have, or what [federal officials] can actually do to force a landowner to comply with the plan," Robb says. "Basically, we want to see what it is that we're going to be involved in and what's going to be expected of us."

U.S. Rep. Ray LaHood, a Peoria Republican and one of the Illinois River's leading boosters, sees those sentiments as nonsense.

"If you listen to John Robb, you think if the Illinois River gets designated, central Illinois is going to be inundated with a bunch of bureaucrats telling them what they can and cannot do," LaHood says. "It's the whole Chicken Little philosophy that the sky is falling."

Likewise, Lt. Gov. Bob Kustra, a longtime advocate for the Illinois River and the state's point man in the attempt to get it included in the federal initiative, says Robb and other skeptics needn't be so skittish.

In what LaHood called a smart political move, Kustra and Chicago Mayor Richard Daley jointly nominated the 55-county Illinois River watershed and its Chicago tributaries for the Heritage River designation. "It helps when you have a mayor that has been supportive of the president on several public policy issues and a president who thinks highly of the job the mayor is doing," Kustra says. But, he adds, partisanship won't get in the way of the restoration efforts along the Illinois.

A panel of experts, probably sometime this month or next, will wrap up consideration of the 126 nominees and send its recommendations on the 10 finalists to the president. Each Heritage River will have a full-time liaison, called a "navigator," whose job will be to help line up federal and private resources to tackle various aspects of river restoration.

Despite opposing views on the initiative, everyone agrees on one point: The river and its watershed need help. "There's no doubt about it," says Robb. "The Illinois River and the Mississippi and Missouri rivers are all filling up with sand and sediment. Especially the Illinois. It's really getting bad."

Sediment clogs the river, necessitating dredging just to keep boats and barges from getting stuck in the muck. Further, the silt prevents aquatic plants from taking root, and that leaves the river unable to support other forms of life, from clams to geese. (See Illinois Issues, January 1997, page 22.)

Mike Platt, head of the Heartland Water Resources Council in Peoria, finds it hard to believe anyone wouldn't want the Illinois River to be picked for the federal initiative. Any lessons learned during the process of saving the Illinois, he says, could be transferred to other rivers that are in poor health.

He adds that the potential repercussions are huge. If the Illinois can be revived, then perhaps other rivers can meet with similar success. "But if we can't do it here," he warns, "it's pretty sure we can't do it anywhere else." 

Adriana Colindres, a reporter in the Copley Illinois Newspapers State Capitol Bureau, covers state government for the Peoria Journal Star and the Springfield State Journal-Register and other Copleyowned newspapers.

30 / March 1998 Illinois Issues