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In Disease Cluster Communities, ‘Salvation’ Is An Elusive Goal

Dan Fagin’s new book “Toms River: A Story of Science and Salvation” is a well-written history of the egregious chemical pollution of Toms River, N.J. decades ago, and the scientific detective work that tried to figure out whether the pollution caused the "cancer cluster" in that area.

But the subtitle suggests there was "salvation," and as anyone who has lived in a cancer or disease ‘cluster’ community can tell you, salvation never really comes. At least not if your definition of salvation includes a clear answer to the key question at hand: Is something in the environment making us sick?

I reported on several of these communities over the years. Sadly, people dealing with illness and death and tragedy, those who are most hungry for explanations, were almost always left unsatisfied.

  • Anne Anderson and Donna Robbins and the other parents in Woburn, Mass. who believed industrial solvents in the town’s water killed more than a dozen kids from leukemia.
  • The parents of a group of autistic children in Leominster, Mass. who suspected that the high prevalence of the disease in their area was the result of the plastic industry’s activity there years before.
  • The Lowell, Mass. residents who were sure that the industrial chemicals oozing from rusted barrels on the Silresim hazardous waste site had caused an unusual spate of respiratory problems in the neighborhood.

Sometimes a flipped coin comes up heads 10 times in a row. Sometimes, tragically, disease clusters are nothing more than random bad luck.

All these people were sure that the cluster of illness and death in their communities had to be somebody’s fault, because fate alone could not have concentrated so much similar illness in such a small area. They wanted research to tell them what had happened, and who was to blame. But in the end, they never really got the answers they so desperately wanted.

There were two problems. First, sometimes there was no cause, because what seemed to parents like an unusually high number of cases in one small area was just a matter of statistical chance. Over small spans of time and location, pockets like this occur naturally. Sometimes a flipped coin comes up heads 10 times in a row. Sometimes, tragically, disease clusters are nothing more than random bad luck.

The other problem was that even in the rare instances when disease clusters did amount to more than statistical chance, proving whether contaminated air or water had anything to do with the illnesses was practically impossible. The number of victims was usually too small to say anything confidently about possible associations between a potential cause and a specific disease. And accurately recreating the parts per million of chemical contaminants that people might have actually been exposed to, years earlier, based mostly on their memories, was far too imprecise. (The inability of science to answer these questions is largely why the Woburn families’ lawsuit, the subject of the book and film “A Civil Action,” settled without a verdict. The Toms River case settled out of court too.)

A 2012 review of 428 full-scale epidemiological cluster investigations across America since 1990 found only three cases that established some connection between pollution and illness; Toms River, Woburn, and a lung cancer cluster in a small area of Charleston, S.C., which was home to a population of former shipyard workers who had been exposed to asbestos on the job.

And even in Woburn, the most ‘conclusive’ of the three, the results hardly provided the bright clear resolution the parents wanted. After several studies produced inconclusive results, one investigation, conducted years after the case in federal court was over, finally established that “the relative risk of developing childhood leukemia was greater for those children whose mothers were likely to have consumed water from wells G and H (which had been contaminated by industrial solvents) during pregnancy than for those who did not.” Meaning that the pollution may have killed the kids, but the authors quickly cautioned, “Our limited ability to demonstrate (statistical) significance warrants cautious interpretation of the precise magnitude of risk.” Meaning that the sample of less than two dozen victims was too small to be sure about the results.

They wanted research to tell them what had happened, and who was to blame. But in the end, they never really got the answers they so desperately wanted.

There are many lessons in Fagin’s book and all those disease cluster stories I covered. One is that we just don’t have the scientific tools to establish with reasonable certainty what common sense seems to tell us about environmental risks. There may be lots of real clusters out there. Science just can’t confirm them.

Another lesson is that tragedy and emotion are powerful lenses through which people see circumstantial evidence, leading to conclusions that feel right and fit the accepted narrative about environmental risks, but which the factual evidence just doesn’t support. Sometimes a cluster of disease victims really is just rotten luck. Sometimes we fear the wrong villain.

Finally, and sadly, Toms River and Woburn and Leominster and Lowell, and hundreds of other communities worried that pollution had caused a cluster of disease, taught us that the combination of subjective and emotional risk perception, combined with the inability of science to provide firm answers, leaves the people in these communities caught in a frustrating emotional limbo that never cleanly ends, but just peters out in a sad resigned acceptance that the truth will never be known for sure. And that is far short of the resolution — the salvation — that these people deserve and so desperately seek.


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This program aired on March 28, 2013. The audio for this program is not available.

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