Linda Gillick began her quest convinced that science and a little common sense could explain why in one ordinary patch of New Jersey seashore, an unusual number of children, her son Michael among them, have similar types of cancers.
She reasoned that it must be something in the water or air, some unnoticed chemical lurking under a toxic-waste dump or factory -- but in any case, a specific factor that she assumed could be located, analyzed and then eradicated.
"When you have something that is grossly abnormal, you need to find out the indicator that is different from somewhere else," said Mrs. Gillick, who organized a movement that persuaded the state to make a comprehensive environmental study of her town, Toms River, and of surrounding Dover Township in Ocean County. "What do we have that's different? That's the key."
As logical as it may sound, Mrs. Gillick's assumption represents a challenge to science's traditional approach to cancer clusters. Many scientists say that there is a lot of cancer everywhere and that neighborhood concentrations of the disease result from chance, not from the environment. But people who live in areas where the incidence of cancer is higher than expected have rarely been content with that explanation.
Many of these people are turning their discontent into political action. Armed with the clout that gave them an audience with President Clinton in August and a starring role in some of New York Sen. Alfonse D'Amato's re-election campaign advertisements, they have become a driving force behind tens of millions of dollars' worth of new research into cancer clusters.
"This is pushing science to a new era -- of ecogenetic epidemiology," which looks at geographical variations of disease, said Ruth Allen, an environmental epidemiologist with the Federal Environmental Protection Agency. She is the agency's project leader for a $21 million study of elevated breast cancer rates on Long Island, N.Y. "This is where molecular biomarkers of disease and geographical variations are examined together."
Across the United States, health officials are re-examining old monitoring data, using newly refined techniques to search for chemicals that may not have been looked at in earlier air, water and soil tests in communities where cancer clusters are suspected.
An array of ambitious studies are under way using plain gumshoe detective work combined with computer mapping that can fine-tune the picture of what is in a community's environment, identify how people might be exposed to synthetic chemicals and determine whether small amounts of such chemicals may be toxic to humans.
In addition to the investigation of certain childhood cancers in Dover Township and breast cancer on Long Island, there are statewide studies of cancer and chemical use in Connecticut and California, a federal study of elevated breast cancer deaths in mid-Atlantic and Northeast states, and federal studies of childhood and adult brain cancers near toxic-waste sites in several states.
Cancer clusters -- the term is used to describe higher-than-expected concentrations of similar cancers in one discrete area -- have been in the national vocabulary for decades. They can be difficult to document with standard statistical analysis. Sometimes the data involve such small numbers of cases that epidemiologists cannot reach a conclusion about whether an anomaly exists. Sometimes, according to the National Cancer Institute, scientists find "a true excess," but cannot explain it.
"There are so many types of cancer and birth defects that just by chance alone you'd expect any one of them to be high in any one little town," said Dr. Bruce Ames, a biochemist and molecular biologist who directs the National Institute of Environmental Health Sciences Center at the University of California at Berkeley.
Expressing a view widely held in the scientific world, he said that the money devoted to research into environmental links to cancer is misspent and that there is "no convincing evidence" that synthetic chemicals in the atmosphere are an important cause of cancer in humans. "I'd put my money into basic research, not into chasing hypothetical risks," Ames said.
Like a growing number of citizen activists, the Gillick family was not willing to have Dover Township's record of childhood cancers written off as a statistical fluke. The township in southern New Jersey has had 90 cases over a 12-year period, compared with the 67 cases that New Jersey health officials said could be expected during that time.
"It's important to look at everything -- the water, the soil, the air, all of it, and try to find an answer," said Michael Gillick, who was found to have neuroblastoma, a cancer that affects the nervous system, when he was 3 1/2 months old.
Now 19, his growth stunted and his body painfully contorted by the disease, he said he realizes that all the research may never tell him why he, or any other cancer victim, is sick. "It's too late for me," Gillick said. "I already have what I have. I accept it. It's my wish that this not happen to others."
Public clamor for answers has prodded many states, including New York and New Jersey, to process and publish cancer data faster.
In April, for example, the New York state Assembly appropriated $1 million for a comprehensive statewide cancer-mapping project. It was to correlate the types and locations of specific cancers, information already assembled in the state cancer registry, with neighborhood-specific data on past and present water quality, pesticide and chemical emissions, radiation exposure, industrial pollution and local toxic-waste sites.
Although Gov. George Pataki vetoed the appropriation, he promised that the Health Department would do the study from its own budget. But a department spokeswoman, Claire Pospisil, then said it could not create a meaningful map until it upgraded the registry. This year the department published data from 1994 for the registry; its goal is to have 1996 data assembled and published by the end of this year.
Many states, including Hawaii, Illinois and California, have undertaken statewide cancer-mapping projects. The proliferation of cancer mapping reflects a growing trend nationwide to integrate two sets of data that are widely and publicly available: one on toxic-chemical releases and the other on geographical variations in the incidence of some diseases. The trend follows a decade of intense focus on cancer risk factors like diet, lifestyle and heredity.
"Communities now are saying we don't have any of these risk factors, and still we have a problem," said Dr. Allen of the Environmental Protection Agency. "They ask common-sense questions that are at once simple and profound."
Dr. Allen said that "scientists have new tools and new hypotheses that they are testing," but that the political impetus for environmental research came after cancer-cluster activists in places like Toms River and Long Island presented elected officials with raw data from their own homemade cancer maps. Politicians have responded.
"They now look at graphical information and say: 'Gee, in my district it's this number and in yours it's that. What's going on?"' Dr. Allen said.
Policy-makers have acted on perceived health risks that are considered merely hypothetical by the scientific establishment. The surgeon-general first recommended putting warnings on cigarette packs in 1964, when the American Medical Association did not yet consider smoking the main cause of cancer.
In the Long Island breast-cancer study, the federal government is sponsoring more than a dozen studies that focus heavily on the possible role of environmental factors in the high breast-cancer rates in parts of the island..
Some try to correlate cancer incidence with historical data on wind patterns, groundwater flow and the accumulation of pesticides over time in the soil. Others involve new toxicological tests on 220 chemicals that might be found on Long Island. Half of them were added to the list at the demand of local activists.
Similarly, when the New Jersey authorities were pressed two years ago investigate what some experts said was a statistically unusual incidence of some childhood cancers in Dover Township, they agreed to look for 235 substances instead of the 85 they usually monitor in drinking water.
In the course of the testing, they found traces of a chemical compound, or trimer, that is a byproduct of styrene and acrylonitrile. Both chemicals, used for decades in local factories, are listed as carcinogens by the EPA.
The route to the water system, according to preliminary research results, appears to be from a Superfund toxic-waste dump, which received waste from these factories, less than one mile from a well field serving Dover Township.
When New Jersey officials examined old records of what was in the drinking water, they said they found that the compound had been present for at least 10 years. It was not investigated further, because it was not on the list of state and federally regulated pollutants. The trimer is now being tested to determine if it is a human carcinogen.
It is too early to draw any conclusions about whether there is a relationship between human cancers and the trimer, said James Blumenstock, acting senior assistant commissioner of the state Department of Health and Senior Services. But he said the study is prompting a reassessment of which and how many chemicals should be regulated. "As science advances," he said, "our ability to measure and detect contaminants will improve."
Public pressure to conduct the Dover Township study also focused attention on the New Jersey cancer registry, which was found to be too out of date to be useful. The data bank has since been updated, and the state Assembly passed a law that set fines of up to $1,000 a day for medical personnel who fail to file timely reports of cancer cases.
Dover Township's study is only one of many efforts to take a fresh look at childhood cancer and possible risks to children from chemicals in the environment.
The National Cancer Institute, for example, is financing a pioneering study in California of potential links between pesticides and childhood cancers. It was spurred by the discovery of an unexpectedly high number of brain cancers in children in the Central Valley town of McFarland.
"When we realized how impossible it is to explain why any one cluster exists, we tried to step back from looking at specific clusters and look at the big picture, whether there are patterns of risk we should be paying attention to," said Peggy Reynolds, chief of the environmental epidemiology and geographic information system section of the state health department.
The momentum behind cluster studies caught other health officials off guard. Mary Lerchen, an epidemiologist with the cancer surveillance branch of the Centers for Disease Control and Prevention, said the federal centers cannot keep track of the ballooning number of studies and is seeking money to set up a cancer-cluster registry that could coordinate research findings.
"Seldom have we found the cause of a cancer because a cluster brought it to our attention," Dr. Lerchen said, "but you never know, and you certainly can't start out with that attitude."
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