Cancer Clusters:

Findings Vs. Feelings

Prepared for the American Council on Science and Health

by David Robinson
American Council on Science and Health

Project Coordinator
Ashlee Dunston

Art Director
Yelena Ponirovskaya

President
Elizabeth M. Whelan, Sc.D., M.P.H.

March 2002

AMERICAN COUNCIL ON SCIENCE AND HEALTH

1995 Broadway, 2nd Floor, New York, NY 10023-5860
Tel. (212) 362-7044 • Fax (212) 362-4919
URL: http://www.acsh.org • E-mail: acsh@acsh.org
THE AMERICAN COUNCIL ON SCIENCE AND HEALTH (ACSH)
APPRECIATES THE CONTRIBUTIONS OF THE REVIEWERS
NAMED BELOW.

Michael Bracken, Ph.D., M.P.H. Steven Rosen, M.D.

Yale University School of Medicine
Sir Richard Doll, M.D., D.Sc., D.M.
University of Oxford
George Ehrlich, M.D.
University of Pennsylvania School of
Medicine
Sander Greenland, Dr.P.H., M.S., M.A.
UCLA School of Public Health
Clark Heath, M.D.
American Cancer Society
William Jarvis, Ph.D.
Loma Linda University Schools of
Medicine and Public Health
Alan Kristal, Dr.P.H.
Fred Hutchinson Cancer Research
Center
Northwestern University Medical
School
Gilbert Ross, M.D.
Medical Director, ACSH
Wallace Sampson, M.D.
Stanford University School of
Medicine
David Schottenfeld, M.D., M.SC.
University of Michigan School of
Public Health
Michael Simon, M.D., M.P.H.
Barbara Ann Kamanos Cancer
Institute, Wayne State University
Mark Utell, M.D., University of
Rochester Medical Center
Elizabeth Whelan, Sc.D., M.P.H.
President, ACSH

ACSH accepts unrestricted grants on the condition that it is solely responsible for the
conduct of its research and the dissemination of its work to the public. The organization
does not perform proprietary research, nor does it accept support from individual corpo-
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organization under Section 501(c)(3) of the Internal Revenue Code—are tax deductible.

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Copyright © by American Council on Science and Health, Inc.

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means, without permission.
 Table of Contents
Executive Summary 5
Introduction 6
What Is A Cancer Cluster? 6
How Common Are Cancer Clusters? 7
Why Are Investigations of Potential Environmental Cancer
Clusters So Often Inconclusive? 9
The Bull’s-eye Problem 9
Public Pressure 11
Problems with Data Collection 13
Chance 15
Geography as Symptom 15
Proving a Negative—Never Say “Never” 15
A Case in Point—Long Island and Breast Cancer 16
Conclusion 20
A Checklist: ACSH Recommends 21
References 22
Executive Summary

The issue of cancer clusters, which has been in the spotlight

recently, is plagued by a wide disparity between public perceptions
and scientific findings. Movies like Erin Brockovich and A Civil
Action have led the public to think that industrial pollution in the
environment is causing local “cancer clusters” where cancer cases
are more prevalent due to cancer-causing chemicals.
There are many scientifically documented instances in which
chemical exposure has caused cancer in humans, but these have
generally not been purely environmental. Contamination in the
water supply or air causing residents of a neighborhood to develop
cancer, although popularly thought to be a common occurrence, has
rarely been documented through scientific investigation. Instead,
the clusters that scientists have been able to attribute successfully to
a particular cause have been occupational—such as workers in a
factory developing a particular type of cancer as a result of expo-
sure to one of the chemicals they handle every day—or have been
linked to a particular medicine, or to behaviors such as smoking or
sunbathing. The evidence for environmental contamination causing
cancer, however, is sparse. There is some indication that chemicals
dissolved in drinking water may elevate the risk of gastrointestinal
and bladder/urinary tract cancers, and that living next to a smelter
or other “point source” of air pollution may elevate risk of lung can-
cer. The many efforts that have been made to demonstrate links
between other types of cancer and environmental contamination
have not conclusively identified such links.
Science does not support the popular image of traces of chemical
contamination elevating the cancer risk of everyone who lives in a
neighborhood regardless of where they work, what sort of lives they
lead, and what hereditary influences may predispose them to cancer.
The absence of conclusive scientific evidence in this area may be
partially explained by the myriad challenges that bedevil cancer
cluster investigations—challenges that are explored in this report.
This report discusses the potential cancer clusters in Toms River,
New Jersey and Long Island, New York, because they contain many
elements typical of cancer cluster investigations and have received
considerable media attention.

5
 Cancer Clusters:
Findings and Feelings

Introduction

The fear that industrial pollution, present in trace amounts in the

environment around us, may be causing “cancer clusters”—local
areas where cancer is more prevalent as a result of cancer-causing
pollutants—has received a great deal of attention recently. Films
such as Erin Brockovich and A Civil Action have helped bring clus-
ters to the forefront, and community concern over possible clusters
has led to congressional mandates, federal investigations, and an
increase in public sensitivity to the issue. In this report, ACSH pro-
vides a concise introduction to the issue, to help journalists, public
officials, and members of the public understand both the science
and the beliefs that drive the discussion.

What Is a Cancer Cluster?

Cancer clusters are a frequent topic of media attention, and have

come to have two different meanings, one for the public and one
for scientists. While the public typically thinks of cancer clusters in
terms of cancer caused by industrial pollution, scientists tend to see
the issue differently. Robert N. Hoover, M.D., Sc.D., Director of the
Epidemiology and Biostatistics Program in the Division of Cancer
Epidemiology of the National Cancer Institute (NCI) defines a can-
cer cluster as a geographic area, time period, or group of people
with a greater than expected number of cases of cancer.1
Epidemiologists—scientists who study the causes and distribution
of human diseases—expect cancer rates to vary slightly from year
to year and use statistical tests to determine whether or not a given
rate is different enough from the average to qualify as unexpected.2
Proving that a cluster exists entails a rigorous statistical analysis, in
which the number of cases observed in some area over a specified
interval of time is compared to the expected number of cases for
that time period and area.
Scientists can use clustering as a way to learn about associations
between cancer and any external agent, not only pollutants. For
example, much of the scientific literature on clusters involves the
evaluation of hypotheses that attribute the spread of cancer to infec-
tious agents. The U.S. Centers for Disease Control and Prevention
has conducted cancer cluster investigations for over 20 years.

6
G. Caldwell, of the Arizona Department of Health Services, review-
ing this body of work, explained that “the original plan was to
investigate such clusters to determine if they were a phenomenon
indicative of cancer transmissibility.”3 Likewise, the 1982 edition of
Schottenfeld and Fraumeni’s authoritative textbook Cancer
Epidemiology and Prevention begins its chapter on clustering by
explaining that it is “especially directed towards examining more
localized variations in the incidence of cancers in space and time
that might suggest that the cancers are induced by infectious
agents.” 4
The realization that smoking elevates the risk of lung cancer is
described in much of the early (pre-1970) scientific literature as an
analysis of clustering—nations and areas with more residents who
smoke evince higher rates of lung cancer. Such instances demon-
strate that the term “cluster” can be used on a very large scale, to
refer to an elevated incidence of cancer in the entire population of
one nation as compared to that of another, or to similarly large
groups. It is more commonly used, however, to describe elevated
rates in more localized areas, such as a single town or neighbor-
hood.
The public and the media, on the other hand, often use the term
“cancer cluster” in a more general way. When members of a com-
munity believe that the number of cancer cases in their community
is abnormally high, they will often seek an explanation for the “can-
cer cluster.” The media may then report on efforts to explain the
cluster, before a statistical analysis has verified that the rates of can-
cer in the community are actually elevated. Thus, the term “cancer
cluster” is often used by the public and the media to refer to the
perception of an elevated number of cancer cases, and by epidemi-
ologists to refer to confirmation of this perception. The community
perception may reflect an elevated rate of cancer, or it may not.

How Common Are Cancer Clusters?

Scientists and researchers have verified a number of cancer clus-

ters. Diethylstilbestrol (DES), a drug used during the 1940s and
1950s to prevent premature labor in pregnant women, is the cause
of one such cluster. Because a prestigious group of Boston physi-
cians advocated the use of DES, many of the women who used it

7
 Cancer Clusters:
Findings and Feelings

lived in the Boston area. Fifteen to 20 years after these women had
used DES, doctors noticed a miniature “epidemic” of vaginal can-
cers among their daughters. The specific form of cancer observed—
adenocarcinoma—is so rare that the hospital where eight of the
daughters were treated within the space of a few years had never
encountered any cases of it before. Physician concern over the can-
cer led to an investigation that linked the vaginal cancers to DES.5
Most observers might not call this a “cluster” because it does not
involve supposedly carcinogenic conditions in the environment
where people live, but it is considered one by epidemiologists since
a large number of rare cancers in one area (Boston) prompted the
study.
Other cancer clusters have been found in occupational settings.
One example concerns the material polyvinyl chloride (PVC), more
commonly known as vinyl. PVC is one of the most widely used
synthetic compounds in the world. It is an important material for
construction and siding, a common insulator of electrical and other
wiring, and a common material for making shower curtains. At fac-
tories around the world, workers were exposed to very high concen-
trations of one of the ingredients used to make PVC, a volatile
chemical known as vinyl chloride monomer (VCM). VCM is not
used directly by the public, but it is a key part of the PVC manufac-
turing process. The workers who handled VCM, it was observed,
had elevated prevalence of a rare liver cancer, hepatic angiosarco-
ma. Rigorous investigations eventually proved that VCM elevated
the risk of hepatic angiosarcoma in these factory workers.6
The public expresses concern over many possible clusters each
year. In most cases, the perceived increase in the prevalence of can-
cer that has generated alarm is not in fact an increase in prevalence
at all. According to public health officials, 85 percent or more of
the possible clusters reported to them by concerned community
members are in fact not statistically significant elevations of cancer
rates.7,8 Many of these supposed clusters include whatever types of
cancer have been diagnosed in the area. This ignores the reality that
different cancers are really different diseases.
As noted, cancer clusters have been reliably linked through con-
trolled studies with specific medicines, like DES, and with occupa-
tional exposures to chemicals like VCM. Scientific findings do not,
however, match up with public perceptions about localized eleva-
tions in prevalence of many different cancers as a result of industri-

8
al pollutants in the environment. To quote from the most recent edi-
tion of Cancer Epidemiology and Prevention, “Overall, there are a
sufficient number of point source studies to conclude that excess
lung cancer risk was very likely caused by large, relatively uncon-
trolled sources of community air pollution, particularly arsenic-
emitting smelters…. However, the risks for community exposure
are likely to be quite small, between 1.5 and 2.0 [times the normal
rate] and will require substantial study populations and careful
assessment of other known lung cancer risk factors.”9 Thus, ambient
air pollution in non-occupational settings may be linked to lung can-
cer—not to the wide range of other cancers for which it is often
blamed. At present, lung cancer is the only cancer that has been sci-
entifically tied to ambient air pollution.
As to pollution in drinking water, the evidence is similarly lack-
ing compared with public fears. There is a complex mixture of trace
elements present in drinking water, usually at levels of 10 or fewer
parts per billion. Cancer Epidemiology and Prevention reviews sev-
eral suggested cancer links—including possible carcinogenic effects
of arsenic and organochloride compounds with bladder, GI tract,
and other cancers. It does not identify any chemicals about which
the body of evidence is large or consistent enough to support the
conclusion that they increase cancer risk in the amounts that are
present in U.S. drinking water.10
Some clustering should be expected as the result of chance
alone.11 Wherever this chance clustering occurs, it is reasonable to
expect that people will want to know why it has happened—and
equally reasonable to expect that no cause will be found.

Why Are Investigations of Potential Environmental

Cancer Clusters So Often Inconclusive?

The “Bull’s-eye” Problem

A variety of factors often work together to create the appearance

of a cluster where nothing abnormal is occurring. Looking for clus-
ters is analogous to drawing a bull's-eye after you have thrown darts
at the wall at random. In this situation, there is possibly a place in
which a bull's eye can be drawn that will leave multiple darts in

9
 Cancer Clusters:
Findings and Feelings

close proximity to some common center. According to the

American Cancer Society, cancer will be diagnosed in an estimated
1,268,000 Americans in 2001.12 Finding clusters in cancer data is
thus something like looking for patterns in the location of over a
million darts thrown at a dartboard the size of the United States.
The definition of what geographic area is to be investigated in a
cancer cluster study is often problematic. If the hypothesis that can-
cer rates in a certain area may be elevated provides the initial impe-
tus for the study, the natural temptation is to study only the area
that includes the cases that inspired the study. This problem is
called “pre-selection bias” because it involves researchers pre-
selecting the geographic area of a study based on what they already
know an investigation of certain areas would reveal. In much the
same way as gerrymandering—to include certain voters in an elec-
toral district—can shape the outcome of elections, pre-selection
bias—to include certain patients in the geographic area of a study—
can shape the outcome of cancer cluster investigations.
The problem of “drawing the bull’s-eye” applies not only to
space, but also to time. A study of two clusters in one Ontario town
noted that “…the tendency is to include all years in which cases
were reported [in the date range chosen for analysis], thereby maxi-
mizing, and magnifying, any effect which may be present.”13
A third way in which the bull’s-eye problem can skew results is
in the selection of which cancer to include as part of a possible
cluster. In the case of possible pediatric cancer clustering in Toms
River, New Jersey, investigators began by looking at every category
of childhood cancer and included in their investigation those cate-
gories of cancer whose rates were significantly elevated in Toms
River.14 The threshold of significant elevation that was used meant
that for every twenty cancer categories examined, one would quali-
fy as significantly elevated.
These sorts of expansions are problematic because the greater
the number of possible cancers, areas, and time periods that are
evaluated as potential clusters, the greater the chance that randomly
distributed cases will appear as a cluster. In addition, the links that
have been proven between exposure to carcinogenic chemicals and
elevated incidence of cancer have entailed elevated rates of
extremely specific cancers: DES, in high doses, elevates risk of
vaginal adenocarcinoma, exposure to VCM elevates risk of hepatic
angiosarcoma. One thing these documented instances of elevated

10
prevalence have in common is that the chemical agent consistently
elevates risk of a specific cancer, not of all cancers equally.
Often in these debates, however, a burgeoning set of effects is
putatively linked to a single cause. This is aptly illustrated through
one of the most widely publicized cancer cluster cases in recent
years, the Erin Brockovich case. Dramatized in a major film with
Julia Roberts portraying Ms. Brockovich, an overworked paralegal,
the case dealt with the release of chromium-6 into the Hinkley,
California water supply by Pacific Gas and Electric. The suit
blamed the chemical for dozens of symptoms, from nosebleeds to
breast cancer, miscarriages, Hodgkin’s disease, and spinal deteriora-
tion.15 Workers who inhale large amounts of chromium-6 over long
periods have been shown to be at elevated risk of developing lung
and sinus cancers. But chromium-6 has never been shown to be
related to any other human cancer, or to be carcinogenic to any
degree when dissolved in drinking water.16

Public Pressure

Sometimes, public pressure can impel public health officials to

undertake an investigation they do not believe is warranted.
Investigations undertaken after experts have concluded that nothing
out of the ordinary is occurring are unlikely to produce noteworthy
results.
Community members who raise concerns about possible clusters
will frequently explain themselves in terms of a “common sense”
feeling that something is wrong. Often, they are not inclined to wait
patiently for an in-depth, methodical investigation by public health
authorities.
An investigation into childhood cancer in Toms River, New
Jersey, provides insight into the pressures that can work against bal-
anced scientific inquiry. Toms River is the location of two
“Superfund” sites, places the Environmental Protection Agency
(EPA) has designated as a high priority for clean-up due to the pres-
ence of hazardous waste.
A nurse in a Philadelphia pediatric oncology ward noticed that
many of her patients were from the Toms River area, and speculated
that an environmental cause might be elevating the pediatric cancer
rates in Toms River. When parents brought their concerns to the
attention of state authorities, in 1996, the state evaluated the cancer

11
 Cancer Clusters:
Findings and Feelings

rates and found no cause for alarm. A spokeswoman from the New
Jersey Department of Health explained that the state, based on
existing data about cancer rates, did not think a comprehensive
cluster investigation would be economical or useful, because the
numbers of childhood cancers were “not statistically meaningful.”17
Nonetheless, the state moved to address community concern
with a series of investigations into possible sources of cancer risk,
including the Superfund sites. The parents brought a sense of
urgency to the discussion. “This is a terrible disease, and these kids
suffer…. These kids don’t have time to wait. I have two other chil-
dren, and I’m scared to death,” said one mother of a childhood can-
cer victim.18
“In my heart and in my mind, I have no question. Now, it's up to
the scientists to use logic and common sense to get at the truth,”
said Linda Gillick, chairwoman of a citizen's committee organized
to address the issue and the mother of another cancer victim.19
Where parents were certain, scientists were not. The data on
cancer rates that was available when community members first
raised concerns did not show more cancer than scientists might
have expected to be found in a random distribution in Toms River.
Residents prevailed on their congressional representatives to ask
federal officials for an investigation that state health officials said
would be futile. 20 Ultimately, the study was undertaken as a joint
effort between state officials and the federal Agency for Toxic
Substances and Disease Registry.21
As part of her group’s effort, Linda Gillick traveled to
Washington, D.C. to defend a special line-item allotment of $1 mil-
lion for the Toms River study in one of Congress’s annual appropri-
ations bills.22 Ultimately, Congress passed the item.
Concerned citizens thus had a doubly decisive impact on the
issue. After convincing Congressional representatives to circumvent
state cancer experts and launch a federal investigation, the citizen
activists intervened again to increase the funding for the study over
the amount allotted it in the normal budget process. At both junc-
tures, public concern and fear overrode the decisions of administra-
tors charged with setting public health priorities based on scientific
findings.
The study, which took more than five years to complete, con-
cluded that “no single risk factor evaluated appears to be solely
responsible for the overall elevation of childhood cancer incidence

12
in Dover Township.”23 The study found that most of the childhood
cancer cases in the area have no explanation; the only supportable
environmental link was that between prenatal exposure to contami-
nated drinking water and pediatric leukemia in girls.
Dr. Eddy Bresnitz, a New Jersey state epidemiologist, explained
that even the narrow relationship found in the study might be a
fluke. “Due to the relatively low number of study subjects and other
factors, chance cannot be excluded as a possible explanation for the
findings.”24
“You can't have a child with leukemia living two houses down
from a child with a tumor, drinking the same water and breathing
the same air, and tell me they didn't get cancer from exposure,”
Linda Gillick told the New York Times. “That's my common sense
speaking.”25

Problems with Data Collection

Scientific studies linking elevated cancer risk to environmental

causes have generally involved years-long latency periods between
exposure to carcinogenic factors and development of cancer. The
DES cases did not become obvious until more than 10 years after its
use, and exposure to VCM in vinyl plants takes years to cause can-
cer. Even smoking and sun exposure, the two most widely docu-
mented avoidable cancer risk factors, can take half a lifetime to
make their effect apparent. The latency problem surfaces in two
ways in community-inspired cancer cluster investigations.
First, some of the people who were exposed to the environmental
chemical under investigation may have moved away from the area
before the investigation began. If they subsequently develop cancer
in their new homes, their absence diminishes the perceptibility of
the cluster. If they remain healthy, their absence from the area effec-
tively increases the apparent magnitude of the cluster.
Second, it is possible that some of the cancer cases that occur
within the investigated area may not be attributable to the local
environment. If some of the people who are diagnosed with cancer
moved into the area shortly before being diagnosed, steps must be
taken to assure that their cancer cases are not attributed to local
causes.
The most significant problem plaguing data about possible can-
cer cases is that cancer is typically not a reportable disease. The

13
 Cancer Clusters:
Findings and Feelings

government keeps extensive, complete records of the incidence of

many infectious diseases—such as tuberculosis and venereal dis-
ease—in order to track and counter potential outbreaks. For cancer,
however, no such record exists. Recently, several states have begun
statewide cancer registries. These are helpful to some degree, but
they lack historical data, are plagued by physician compliance prob-
lems, and may not be able to keep accurate account of diagnoses
made out of state. This last issue is particularly problematic, since
many definitive cancer diagnoses are made at major medical cen-
ters for patients who come from out of state in search of top expert-
ise.26
In the absence of reporting requirements, the NCI runs a pro-
gram called SEER (Surveillance, Epidemiology, and End Results),
which documents cancer prevalence in a sample of the U.S. popula-
tion to determine the baseline levels of various cancers. The pro-
gram uses information from hospitals, pathology laboratories,
physicians, and death certificates to determine who has cancer, sup-
plemented by population surveys. The SEER program has been in
operation since 1973 and has quality control procedures in place
that maximize the accuracy and completeness of its results. In addi-
tion, many states provide additional support for the maintenance of
cancer registry information beyond that provided by SEER.
These programs are helpful, but long-term historic information
about cancer incidence is only available for some parts of the coun-
try. The population surveyed by SEER —a subset of the total US
population—is designed to be a representative sample of the nation-
al population. If the local area in which a cancer cluster investiga-
tion is conducted differs demographically from the national popula-
tion, the expected cancer levels established by SEER may not apply
to the area being studied.
The data collection problem is significant because the only way
to determine whether or not the cancer rate in a community is
abnormally high is to compare it to an expected rate. Expected rates
determined with reference to populations different from the one
under study in the area of a potential cluster may not provide a reli-
able guide as to how much cancer should be expected in the area
under study.

14
Chance

As discussed above, the nature of random distributions is such

that some amount of clustering may be expected to occur simply by
chance. It is conventional among scientists to regard an elevated
cancer rate as “statistically significant” if chance alone would pro-
duce as much or more elevation less than 5% of the time. This is
commonly written in the scientific literature as “p<0.05”, where p is
the probability of seeing such an elevation if only chance is at work.
With this criterion, if one examines the cancer rates in 100 neigh-
borhoods, and cancer cases are occurring randomly, one should
expect to find about five neighborhoods with statistically significant
elevations.
Any unusual amount of cancer will tend to provoke concern,
regardless of whether it stems from chance or a more concrete
cause. As a result, the finding that there is a substantial elevation in
cancer rates suggests that further investigation into possible causes
may be warranted, but does not in itself establish that any particular
cause is at work.

Geography as Symptom

When a group of people who live in geographic proximity to one

another exhibit an elevated rate of cancer, the rate may reflect char-
acteristics other than geography that those in the affected area share.
Characteristics like similar diets and exercise patterns may tend to
be geographically “clustered” because low-income people who eat
disproportionately more fatty foods live near one-another, because
health-conscious suburbanites live in the same neighborhood, or
because rates of smoking tend to differ from one community to the
next. In any of these cases, a geographic cluster might be proved to
exist even if there were no chemical carcinogen in the environment.

Proving a negative—Never Say “Never”

No matter how many possible environmental cancer causes are

contemplated, it will always remain possible that some heretofore
ignored chemical in the environment is elevating cancer rates. Thus,
investigations of possible environmental causes for cancer can be

15
 Cancer Clusters:
Findings and Feelings

extended almost indefinitely, as more and more possible carcino-

gens are examined.

For all these reasons—the many ways in which a “bull’s-eye”

can be drawn, problems of latency, the lack of reportability of can-
cer, the similar behaviors and backgrounds of people who live near
one another, and the vagaries of chance—investigations into pro-
posed environmental cancer clusters are unlikely to confirm envi-
ronmental hazards as a source of human cancer.

A CASE IN POINT—LONG ISLAND AND BREAST

CANCER

One example of how science can be overtaken by public concern

can be found in the ongoing investigation of breast cancer rates on
Long Island. Several advocacy organizations have sprung up to
urge public health authorities to take action regarding a perceived
breast cancer “epidemic.” The oldest of these groups is 1 in 9: The
Long Island Breast Cancer Action Coalition. Operational since
1990, 1 in 9 (along with the similar groups that have since been
created) serves as a highly effective force in the public debate. 1 in
9’s website explains: “We have organized and participated in trips
to Albany and Washington to educate our legislators about the need
for action that will help prevent the breast cancer epidemic.” 27
1 in 9 has tenaciously supported the idea that industrial pollution
is elevating the rates of breast cancer on Long Island. Geri Barish,
the group’s president, wrote an instructive editorial in response to
claims that her group was doing more to stoke fears than to support
science:

As activists, we are motivated by an absolute and

unflinching commitment to examine every possible sce-
nario for the unacceptably high levels of cancer in our
midst. While we recognize that many factors, including
genetics, diet, and poor health practices contribute to the
rates of the disease, we believe that industrial chemicals,
such as pesticides and other environmental contaminants,
may also play a role.28

16
 One breast cancer victim, voicing concerns typical of those
recorded by news media, seems convinced that pesticide use on
neighboring lawns caused her cancer. Noting that her neighbors
want “their lawns green and bug-free,” she feels the fact that three
women on her block have died from cancer is “not a coincidence. It
can’t be.”29 Concerns like these highlight the quandary in which
public health officials find themselves—they cannot, no matter how
much they investigate, prove that the elevated rate is a coincidence,
even if that is the real explanation, because it is not possible to
prove a negative.
Ms. Barish and her colleagues do not appear to consider it a pos-
sibility that, when known breast cancer risk factors such as Jewish
ethnicity, bearing a first child later than usual in life, socioeconomic
status, early age at menarche, and late age at menopause are consid-
ered, the rates of cancer on Long Island might be no higher than
should be expected. Geography might be symptom rather than
cause, because people who live on Long Island tend to share other
characteristics beyond area of residence. Any cancer, anywhere,
deserves the attention of medical professionals. The question is
whether the number of breast cancer cases on Long Island suggests
that Long Island should get more attention than other localities,
breast cancer more attention than other diseases, or the environment
more attention than other potential risks. The answers to these ques-
tions might be no—a possibility that 1 in 9 does not consider.
1 in 9’s legislative activism, combined with that of other Long
Island breast cancer groups, succeeded on June 10, 1993, when the
U.S. Congress passed a bill mandating an investigation into possible
environmental causes for breast cancer on Long Island by the NCI.
The bill, which was supported by then-New York Senator Alfonse
D’Amato, explicitly required the NCI to examine five possible envi-
ronmental risk factors—“contaminated drinking water, sources of
indoor and ambient air pollution, electromagnetic fields, pesticides
and other toxic chemicals, and hazardous and municipal waste.”30
Thus, the power of public pressure was responsible for getting an
investigation launched. This intervention by activist groups is often
counterproductive because it has the effect of circumventing the
normal mechanisms that guide scientific inquiry. By creating a nar-
rowly tailored federal mandate to investigate putative environmental
causes of breast cancer, advocates and legislators have taken over a
task for which scientists are the most qualified—deciding how lim-

17
 Cancer Clusters:
Findings and Feelings

ited research and public health dollars ought to be spent.

The Long Island breast cancer issue also provides a demonstra-
tion of the “bull’s-eye” problem. An article in Newsday entitled
“Waiting for Science Can Cost Lives” celebrated the day when “the
determined and creative women of Long Island went door-to-door
and began plotting cases of breast cancer in the area.”31 As dis-
cussed above, the increased scrutiny to which the area under study
is subject may create an inaccurate impression of an elevated can-
cer rate.
The mandated investigation, called the Long Island Breast
Cancer Study Project (LIBCSP), is ongoing. The findings released
thus far, available to the public at the Project’s website,32 do not
seem to bear out the fears of community activists.
One of the questions at the core of this debate is whether or not
breast cancer rates on Long Island are elevated at all, and if they
are, whether or not this elevation can be explained in terms of non-
environmental risk factors like those outlined above. The LIBCSP
has just released a comprehensive Geographic Information System
designed to help researchers investigate the situation. Meanwhile,
using already available tools, a group of researchers at the NCI
completed a study, “Breast Cancer Clusters in the Northeast United
States: A Geographic Analysis.”33 Taking pains to avoid the bull’s-
eye problem discussed above, the researchers used a computer
modeling system to scan the study area for significant clustering.
They found that “there is a statistically significant and geographi-
cally broad cluster of breast cancer deaths in the New York City-
Philadelphia, Pennsylvania, metropolitan area” and noted that with-
in this large cluster are four smaller clusters, each significant in its
own right—Philadelphia with suburbs, central New Jersey, north-
eastern New Jersey, and Long Island. The researchers explain: “The
elevated breast cancer mortality on Long Island may be viewed less
as a unique local phenomenon and more as part of a more general
situation involving large parts of the New York City-Philadelphia
metropolitan area.” This study thus confirms that rates on Long
Island are elevated, but does not do so in a way that lends support
to theories about localized pollution causing cancer, since it exam-
ines such a broad area. Whether the use of pesticides in a neighbor-
hood, or proximity to power lines or to a factory (or any similar sit-
uation) is responsible for the elevated rates cannot be determined
from a study that considers such large aggregates of people. It is
worth noting, however, that the cluster identified by the study

18
extends well beyond Long Island. The area of the cluster does not
share proximity to any single source of industrial pollution. Many
activists have pointed to the Long Island aquifer, which is the
source of drinking water for all Long Island residents, as a potential
risk because of seepage of chemicals into the aquifer from the
ground. The identified cluster, however, includes many sources of
drinking water other than the Long Island aquifer, suggesting that
water contamination is likely not the reason for the increased risk.
Looking at these data, the researchers conclude that the high
breast cancer risk is likely due to one of the factors that they were
not able to incorporate in their study. “The several known and
hypothesized risk factors for which we could not adjust that may
explain the detected cluster are most notably age at first birth, age at
menarche, age at menopause, breastfeeding, genetic mutations, and
environmental factors,” they wrote. They group “known and
hypothesized” risk factors together, but it is important to differenti-
ate between the two—environmental factors are a “hypothesized”
source of risk. For example, the author of a paper entitled
“Epidemiology of breast cancer: an environmental disease?”
explains that the goal of the paper is to consider “potentially contro-
versial conditions which could in the future be recognized as new
risk factors.”34
An in-depth study of the two most frequently blamed chemicals,
the pesticide DDT and a now-banned industrial insulator called
PCBs, investigated Long Island women and concluded that
increased risk of breast cancer does not appear to be associated with
past exposure to these compounds.35 Further, the study’s authors
found that “breast cancer risk among Long Island residents was not
elevated compared with residents of the adjacent New York City
borough of Queens.” 36 Some smaller-scale studies completed in the
early 1990s had indicated that PCBs might be a cancer risk, but
these results were not confirmed by this LIBCSP study.
The investigation mandated by the 1993 law funded five separate
large U.S. studies of women located mainly in the northeastern
U.S., to evaluate the association of blood and serum levels of DDE
(a chemical produced as DDT breaks down in the environment) and
PCBs with breast cancer risk. In a review of these five studies pub-
lished in the Journal of the NCI, researchers conclude that “com-
bined evidence does not support an association of breast cancer risk
with plasma/serum concentrations of PCBs or DDE. Exposure to
these compounds, as measured in adult women, is unlikely to

19
 Cancer Clusters:
Findings and Feelings

explain the high rates of breast cancer experienced in the north-

eastern United States.”37
Another area which the LIBCSP is investigating in response to
the congressional mandate is the possibility of carcinogenic effects
from electromagnetic fields. A research group at the State
University of New York at Stony Brook conducted a review of
occupational studies evaluating correlation between women’s work-
place exposure to electromagnetic fields and the incidence of breast
cancer. They report that eleven such studies have been conducted.
Six of the studies found no association between cancer and work-
place exposure, three of the studies found an association for the
whole group studied, and two of the studies revealed associations
only in subgroups of the population under study.38 These studies
show a fairly typical distribution of positives and negatives that are
found when there is no association. When an association represents
a causative relation, studies are much more consistently positive.
The LIBCSP’s largest, definitive report has yet to be published.
Based on the findings released thus far, however, it seems that the
political impulse to tie breast cancer on Long Island to industrial
pollution is not being validated by science.

Conclusion

Based on the data available today, there is no firm evidence that

traces of industrial pollution diffused in the environment are caus-
ing cancer clusters. This could change as the issue receives continu-
ing scientific scrutiny. For now, however, there is a substantial gap
between scientific findings on this issue and public perceptions.
Science continues to indicate that the primary sources of cancer risk
are obesity, diet, exercise, smoking, alcohol, sun exposure, occupa-
tional chemical exposure, genetic familial cancer syndromes and
susceptibility risk factors such as infectious agents—and not envi-
ronmental chemical exposure. Beyond these, chance (random case
clustering) is a major predictor of perceived cancer clustering.
Citizens, journalists, and public officials share in the responsibility
for accurate and fact-based discussion.

20
A Checklist: ACSH Recommends

For members of the community:

• Be skeptical. “Common sense” does not trump science in this

realm.
• Know your sources: Activists and experts often disagree when it
comes to cancer clusters.
• Remember the bull’s-eye effect: Check for bias in the way sta-
tistics are organized or calculated.

For journalists:

• Help consumers differentiate among suspected clusters in which

incidence is actually not increased, clusters in which incidence
is increased, and clusters for which a cause other than chance
has been identified or is at least strongly suspected on good sci-
entific grounds.
• Put community concern in context—use information like that
contained in this report to ensure that the science of cancer clus-
ters gets covered along with the human side of the issue.
• Clearly distinguish between helpful actions that people can take
to reduce cancer risk—frequent checks for early detection, a
healthy diet and exercise, and in some cases chemoprevention—
from steps like filtering the water that are not proven ways of
reducing cancer risk.

For politicians:

• Focus on measures that are both popular and proven—like

mammograms and chemoprevention when appropriate for
breast cancer, and frank but well-informed discussion of con-
firmed lifestyle risks for all cancers.
• Explain the facts about environmental clusters—we may have
nothing to fear but fear itself.
• Maximize the efficacy of cancer research and epidemiology
dollars by allowing public health officials and scientists to
direct and manage the details of research efforts.

21
 Cancer Clusters:
Findings and Feelings

References

1. Testimony of Robert Hoover, M.D., Sc.D., Dir. Epidemiology

and Biostatistics Program, NCI, to the Senate Cancer
Coalition, U.S. Senate, June 5, 2001.
2. Typically, the statistical threshold p<0.05 is used.
3. Caldwell, G.G., Twenty-two years of cancer clusters investiga-
tions at the Centers for Disease Control, Am J Epidemiol
1990;132:S43-S47.
4. Schottenfeld D. and Fraumeni J. F. Cancer Epidemiology and
Prevention, W. B. Saunders and Company, 1982.
5. p. 305 in Cancer Epidemiology and Prevention.
6. Lewis, R., Vinyl Chloride and Polyvinyl Chloride, Occup Med
1999 Oct-Dec;14(4):719-42.
7. Bender. A.P., et al., Appropriate public health responses to
clusters: the art of being responsibly responsive, Am J
Epidemiol 1990;1322:S48-S52.
8. Testimony of David W. Fleming, M.D. Deputy Director for
Science and Public Health, Centers for Disease Control and
Prevention, and Deputy Administrator, Agency for Toxic
Substance and Disease Registry, Department of Health and
Human Services, Before the Senate Cancer Coalition, U.S.
Senate, June 5, 2001.
9. Schottenfeld D. and Fraumeni J. F. Cancer Epidemiology and
Prevention 2nd Edition, Oxford University Press, 1996
Schottenfeld and Fraumeni, 2nd ed., p. 414.
10. Schottenfeld and Fraumeni, 2nd ed. ch. 20—“Water
Pollution”.
11. Fleming testimony (ibid.).
12. Cancer Facts & Figures 2001, American Cancer Society.

22
13. Kreiger, N. and D. Reynolds, An investigation of two apparent
cancer clusters in one community, Revue Canadienne Du Santé
Publique, 83:2:116-119.
14. Carol Gorga Williams. “Probers cast wider net for childhood
cancer victims.” Asbury Park Press, 4/19/96.
15. Fumento, Michael. “’Erin Brockovich’ Exposed.” The Wall
Street Journal, March 28, 2000.
16. Ibid.
17. “TRACKING DOWN A CAUSE; Lawmakers pledge fund to
better assess child cancer cluster.” Asbury Park Press. 3/19/96.
18. Terry Dube of Lakehurst, NJ as quoted in “Cancer-fearing
families rally; authorities advice patience.” Asbury Park Press,
3/16/96.
19. “State says Toms River water supply is OK now, but studies
continue.” AP Newswire. 11/16/99.
20. TRACKING DOWN A CAUSE, ibid.
21. Ibid.
22. Press Release, Congressman Jim Saxton. June 23, 2000.
<http://www.house.gov/saxton/pr62300.htm>.
23. Case-control Study of Childhood Cancers in Dover Township
(Ocean County), New Jersey. < http://www.state.nj.us/health/
eoh/hhazweb/dovertwp.htm>.
24. “Little Reassurance for Toms River Residents About Causes of
Cancers” Iver Peterson, New York Times, December 19, 2001.
25. “Toms River Still Asking A Question: 'Why Us?'” Iver
Peterson, New York Times, December 21, 2001.
26. Testimony of Randall L. Todd, DrPH, State Epidemiologist,
Nevada State Health Division, before the Senate Committee on
Environment and Public Works, June 11, 2001.
27. <http://www.1in9.org/mile.htm>.

23
 Cancer Clusters:
Findings and Feelings

28. “LI Topic / Should we trust the government to see if our land
is safe?” Geri Barish. Newsday. Feb. 7, 1999.
29. “Long Island cancer rate prompts debate, congressional hear-
ing.” AP Newswire. June 10, 2001.
30. Public law 103-43, June 10, 1993, from http://epi.grants.can-
cer.gov/LIBCSP/PublicLaw.html.
31. Davis, Devra Lee et. al. “Waiting for Science can Cost Lives.”
Newsday. December 31, 2000.
32. http://epi.grants.cancer.gov/LIBCSP/.
33. Kulldorff M. et al., Breast Cancer Clusters in the Northeast
United States: A Geographic Analysis, Am J Epidemiol
1997;146:161-170.
34. Sasco A.J., Epidemiology of breast cancer: an environmental
disease?, APMIS 2001 May;109(5):321-329.
35. Stellman, S.D., et al., Breast cancer risk in relation to adipose
concentrations of organochloride pesticides and polychlorinat-
ed biphenyls in Long Island, New York, Cancer Epidemiol
Biomarkers Prev 2000 Nov;9(11):1241-9.
36. ibid.
37. Laden F., et al., 1,1-Dichloro-2,2-bis(p-chlorophenyl)ethylene
and Polychlorinated Biphenyls and Breast Cancer: Combined
Analysis of Five U.S. Studies, J National Cancer Inst
2001;93:768-76.
38. Caplan L.S., et al., Breast cancer and electromagnetic fields—
a review. Ann Epidemiol. 2000 Jan;10(1):31-44.

24
 AC SH E XEC UT IVE S TA F F

Elizabeth M. Whelan, Sc.D., M.P.H.

President
A CSH BOA RD O F DI REC TORS

Fredric M. Steinberg, M.D. Thomas R. DeGregori, Ph.D. Stephen S. Sternberg, M.D.

Chairman of the Board, ACSH University of Houston
Hertfordshire, England
Henry I. Miller, M.D.
Terry L. Anderson, Ph.D., M.S. Hoover Institution
Political Economy Research Center
A. Alan Moghissi, Ph.D.
Elissa P. Benedek, M.D. Institute for Regulatory Science
University of Michigan
John H. Moore, Ph.D., M.B.A.
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Albert G. Nickel
Michael B. Bracken, Ph.D., M.P.H. Lyons lavey Nickel swift, inc.
Yale University School of Medicine
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University of California Surgeons
Taiwo K. Danmola, C.P.A. Fredrick J. Stare, Ph.D., M.D.
Arthur Andersen llp Harvard School of Public Health
A CS H BO ARD OF S CIE NTI FIC
Memorial Sloan-Kettering Cancer Center
Mark C. Taylor, M.D.
Physicians for a Smoke-Free Canada
Lorraine Thelian
Ketchum Public Relations
Kimberly M. Thompson, Sc.D.
Harvard School of Public Health
Elizabeth M. Whelan, Sc.D., M.P.H.
American Council on Science and Health
Robert J. White, M.D., Ph.D.
Case Western Reserve University
AN D P OLI CY ADVISORS

Ernest L. Abel, Ph.D.
C.S. Mott Center
Alwynelle S. Ahl, Ph.D., D.V.M.
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Julie A. Albrecht, Ph.D.
University of Nebraska, Lincoln
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Thomas S. Allems, M.D.,
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Richard G. Allison, Ph.D.
American Society for Nutritional
Sciences (FASEB)
John B. Allred, Ph.D.
Ohio State University
Philip R. Alper, M.D.
University of California, San
Francisco
Karl E. Anderson, M.D.
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Hudson Institute
Robert S. Baratz, D.D.S.,
Ph.D., M.D.
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Medical College of Virginia
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Pennington Biomedical Research
Center
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C.Chem., DABT
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Alfred I. duPont Hospital for Children
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University of South Carolina
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Bell, Boyd & Lloyd LLC
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Cornell University James R. Dunn, Ph.D. Ralph W. Fogleman, D.V.M. William W. Greaves, M.D.,
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University of Pittsburgh Robert L. DuPont, M.D. Christopher H. Foreman, Medical College of Wisconsin
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The opinions expressed in ACSH publications do not necessarily represent the views of all ACSH Directors and Advisors.
ACSH Directors and Advisors serve without compensation.
O F SCI ENT IFI C AND POL ICY
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Baltimore Headache Institute J. D. Robinson, M.D.
Eric W. Mood, LL.D., M.P.H. Georgetown University School of C. Joseph Stetler, Esq.
Yale University School of Medicine
John W. Morgan, Dr.P.H.
California Cancer Registry
W. K. C. Morgan, M.D.
University of Western Ontario
Stephen J. Moss, D.D.S., M.S. Dale R. Romsos, Ph.D.
Health Education Enterprises, Inc.
Ian C. Munro, F.A.T.S.,
Ph.D., FRCPath
Cantox Health Sciences International
Kevin B. Murphy
Merrill Lynch, Pierce, Fenner &
Smith
Harris M. Nagler, M.D.
Beth Israel Medical Center
Daniel J. Ncayiyana, M.D.
University of Cape Town
Philip E. Nelson, Ph.D.
Purdue University
Malden C. Nesheim, Ph.D.
Cornell University
Joyce A. Nettleton, D.Sc.,
R.D.
Elmhurst, IL
John S. Neuberger, Dr.P.H.
University of Kansas School of
Medicine
Gordon W. Newell, Ph.D.,
M.S.,F.-A.T.S.
Palo Alto, CA
Steven P. Novella, M.D.
Yale University School of
Medicine
James L. Oblinger, Ph.D.
North Carolina State University
John Patrick O’Grady, M.D. Kaiser Permanente Medical
Tufts University School of Medicine Center
James E. Oldfield, Ph.D.
Oregon State University
Stanley T. Omaye, Ph.D.,
F.-A.T.S., F.ACN, C.N.S.
University of Nevada, Reno
Osterholm, Michael T.,
Ph.D., M.P.H.
ican, Inc.
M. Alice Ottoboni, Ph.D.
Sparks, NV
Michael W. Pariza, Ph.D.
University of Wisconsin, Madison
Stuart Patton, Ph.D.
University of California, San
Diego
Timothy Dukes Phillips, Ph.D. University of Illinois, Urbana-
Champaign
Texas A&M University
Earl G. Siegel, Pharm.D.
Pennsylvania State University
David R. Pike, Ph.D.
University of Illinois, Urbana-
Champaign
Thomas T. Poleman, Ph.D.
Cornell University
Charles Polk, Ph.D.
University of Rhode Island
Charles Poole, M.P.H., Sc.D Project
University of North Carolina
School of Public Health Robert B. Sklaroff, M.D.
Gary P. Posner, M.D.
Tampa, FL
ADVISORS
John J. Powers, Ph.D. Myron Solberg, Ph.D.
University of Georgia Rutgers State University of New
Jersey
University of British Columbia Roy F. Spalding, Ph.D.
Kary D. Presten University of Nebraska, Lincoln
U.S. Trust Co. Leonard T. Sperry, M.D., Ph.D.
Barry University
Marvin P. Pritts, Ph.D.
Cornell University Robert A. Squire, D.V.M.,
Daniel J. Raiten, Ph.D. Ph.D.
National Institute of Health Baltimore, MD
David W. Ramey, D.V.M. Ronald T. Stanko, M.D.
University of Pittsburgh Medical
Ramey Equine Group
Center
R.T. Ravenholt, M.D., M.P.H. James H. Steele, D.V.M.,
Population Health Imperatives
M.P.H.
Russel J. Reiter, Ph.D. University of Texas, Houston
University of Texas, San Antonio
Robert D. Steele, Ph.D.
Judith S. Stern, Sc.D., R.D.
University of California, Davis
Medicine Potomac, MD
Bill D. Roebuck, Ph.D., D.A.B.T. Martha Barnes Stone, Ph.D.
Dartmouth Medical School Colorado State University
David B. Roll, Ph.D. Michael M. Sveda, Ph.D.
University of Utah Gaithersburg, MD
Glenn Swogger, Jr., M.D.
Topeka, KS
Michigan State University
Sita R. Tatini, Ph.D.
Steven T. Rosen, M.D.
Northwestern University Medical University of Minnesota
School Steve L. Taylor, Ph.D.
Kenneth J. Rothman, Dr.P.H. University of Nebraska, Lincoln
Editor, Epidemiology Dimitrios Trichopoulos, M.D.
Harvard School of Public Health
Stanley Rothman, Ph.D.
Smith College Murray M. Tuckerman, Ph.D.
Edward C. A. Runge, Ph.D. Winchendon, MA
Texas A&M University Robert P. Upchurch, Ph.D.
University of Arizona
Stephen H. Safe, D.Phil.
Texas A&M University Mark J. Utell, M.D.
University of Rochester Medical
Wallace I. Sampson, M.D.
Stanford University School of Center
Medicine Shashi B. Verma, Ph.D.
University of Nebraska, Lincoln
Harold H. Sandstead, M.D.
University of Texas Medical Willard J. Visek, M.D., Ph.D.
Branch University of Illinois College of
Medicine
Herbert P. Sarett, Ph.D.
Sarasota, FL Donald M. Watkin, M.D.,
Lowell D. Satterlee, Ph.D. M.P.H., F.A.C.P.
George Washington University
Oklahoma State University
Marvin J. Schissel, D.D.S. Miles Weinberger, M.D.
Woodhaven, NY University of Iowa Hospitals and
Clinics
Lawrence J. Schneiderman,
M.D. Janet S. Weiss, M.D.
University of California at San-
University of California, San
Diego Francisco
Edgar J. Schoen, M.D. Steven D. Wexner, M.D.
Cleveland Clinic Florida
Joel Elliot White, M.D.,
David Schottenfeld, M.D.,
F.A.C.R.
M.Sc. John Muir Comprehensive
University of Michigan Cancer Center
Joel M. Schwartz, M.S. Carol Whitlock, Ph.D., R.D.
Reason Public Policy Institute Rochester Institute of Technology
Patrick J. Shea, Ph.D. Christopher F. Wilkinson,
University of Nebraska, Lincoln Ph.D.
Burke, VA
Michael B. Shermer, Ph.D.
Skeptic Magazine Mark L. Willenbring, M.D.
Veterans Affairs Medical Center
Sidney Shindell, M.D., LL.B.
Medical College of Wisconsin Carl K. Winter, Ph.D.
University of California, Davis
Sarah Short, Ph.D., Ed.D.,
R.D. Lloyd D. Witter, Ph.D.
Syracuse University University of Illinois, Urbana-
A. J. Siedler, Ph.D. Champaign
James J. Worman, Ph.D.
Rochester Institute of Technology
Russell S. Worrall, O.D.
University of California, Berkeley
Center Panayiotis M. Zavos, Ph.D.,
Lee M. Silver, Ph.D.
Ed.S.
Princeton University University of Kentucky
Michael S. Simon, M.D., Steven H. Zeisel, M.D., Ph.D.
M.P.H. The University of North Carolina
Wayne State University Ekhard E. Ziegler, M.D.
S. Fred Singer, Ph.D. University of Iowa
Science & Environmental Policy
Elkins Park, PA
Gary C. Smith, Ph.D.
Colorado State University