HBCAC'S
MAPPING PROJECT
CHOSEN TO PRESENT
AT THE ESRI INTERNATIONAL CONFERENCE
click
here for the Community Breast Cancer
Mapping
Huntington
Breast Cancer Action Coalition (HBCAC) was chosen to be a presenter
at the ESRI (Environmental Systems Research Institute, Inc.)
International Health GIS (Geographical Information System)
Conference on November 13, 2001, in Washington D.C. HBCAC's
Scott Carlin, Ph.D., presented the paper entitled "Community
Breast Cancer Mapping - Huntington, Long Island". The
paper highlighted our innovative mapping project and the continuing
contribution that this project had made in breast health awareness.
A major theme of the talk was to explain to public health professionals
(in the public and private sector) the importance of community-based
mapping projects for public health initiatives. Most public
health projects are initiated by governmental agencies. These
projects often do an inadequate job of involving citizens in
the design, execution and distribution of public health research.
Organizations like HBCAC have argued that citizen input into
public health initiatives plays a dual role. First, citizen input
expands public awareness of public health issues. Second, citizens
can play a positive role in shaping scientific research protocols.
In the case of breast cancer, HBCAC has long argue that the government
and research scientists are not paying adequate attention to
the environmental factors that are contributing to breast cancers
on Long Island and elsewhere. HBCAC's community survey and mapping
projects are designed to raise community awareness of the pervasiveness
of breast cancer in their community and to focus public attention
on environmental factors that may be contributing to the region's
high rates of breast cancer. These concerns have also lead HBCAC
to promote a new public policy initiative, the "precautionary
principle: when an activity raises threats of harm to human health
or the environment, precautionary measures should be taken even
if some cause and effect relationships are not fully established
scientifically." In this context the proponent of an activity,
like a chemical manufacture, rather than the public, should bear
the burden of proof. A diverse array of health and environmental
professionals and organizations have already adopted this standard.
Dr. Carlin's presentation focused on these broad themes and also
on the specific results of HBCAC's mapping and survey projects
to date. The breast health survey includes 23,777 women over
the age of 25 who responded to the survey. The creation of the
database took seven years and thousands of volunteers to complete.
The study, performed by Erin O'Leary, Ph.D. and Roger Grimson,
Ph.D., of the Department of Preventive Medicine at the University
Hospital and Medical Center at Stony Brook, NY, found that of
the 37% of women over 25 who responded to the survey, 5.1% had
breast cancer at some point in their lives. Expertise and production
of the large maps used for display of the project were provided
by Mr. David Mikolaitis, P.E., Director of Computer Services,
Greenman-Pedersen, Inc., Babylon, NY, who volunteered their services.
The next phase of the mapping research will focus on identifying
breast cancer clusters - areas in Huntington where the prevalence
of breast cancer is much higher than expected. Comments after
the presentation included several questions regarding HBCAC's
research methodologies, and what HBCAC intends to do to strengthen
the scientific validity of its results. Dr. Carlin felt that
the direction of these questions reflects the difficulties that
citizen-based research has in having its voice heard. "We
want our research to have scientific validity and we welcome
these comments from scientists, but we also want the scientific
community to recognized that we are trying to expand the scope
of inquiry beyond the bounds of traditional science. The limited
resources available for this project creates a certain amount
of tension between our desire to be innovative and meet the needs
of the scientific community," Dr. Carlin said. Dr. Carlin
was also invited to make a similar presentation in San Diego,
California in July 2001 at ESRI's International Users Conference
and is scheduled to also present these issues to the Society
of Environmental Journalists in January 2002 in New Jersey.
Sidebar: Introduction to Dr. Scott Carlin's paper
What makes community mapping innovative?
First, community maps invite community participation- these are the community's
maps! Second, community maps are important educational tools. Maps allow many
residents to better understand local issues in a more concrete fashion. Third,
community maps are a valuable tool for developing critical thinking skills. Through
its maps and other campaigns, HBCAC wants local residents to question various
environmental exposures. Are pest-free lawns worth the risks of potentially higher
breast cancer rates? Should residents ignore the broad-based usage of toxic substances
in their community? Fourth, community-mapping projects are distinctive because
local citizens, often working through non-profit organizations, control the mapping
process. They control what is to be mapped, how maps are to be distributed, and
how they are to be publicized.Fifth, community-mapping projects can reveal in
powerful ways how much the community's goals differ from their government's goals.
Today, a wide chasm has opened up in the environmental health field. On the one
side are government officials and academics, who feel that mapping exercises
should continue to focus on research. On the other side are the environmental
health advocates and some environmental scientists. They believe various cancers
are a direct product of industrial era chemicals. In particular, much attention
is now focusing upon groups of chemicals that affect the body's hormonal system.
In OUR STOLEN FUTURE, Dr. Theo Colburn and others argue that synthetic chemicals
mimic natural hormones and trigger hormone-related cancers, like breast cancer.
Research like this is shifting public opinion towards a precautionary environmental
health policy; we should minimize our usage of chemicals that pose potential
health risks to humans and other species. In her past breaking book SILENT SPRING,
Rachel Carson begins by noting how intimately we live with modern chemicals -
how we eat, drink, and breathe pesticides into our bodies without pausing to
consider the devastation that these chemicals cause. Dr. Sandra Steingrabber,
author of LIVING DOWNSTREAM, also emphasized these issues of intimacy. For example,
she discussed how mothers pass along PCBs and other chemicals to their newborn
children through their breast milk. While community-based maps do not create
a two dimensional portrait of these intimate health relationships, they do paint
a powerful picture of communities suffering silently, street after street, through
devastating illness. Breast cancer maps are a powerful tool for breaking that
silence and forcing the public to confront its secrets.
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