is proud to feature our new women's health forum
link. Because we feel that current health issues are an integral part
of an overall "life enhancing" manner of living, we now
feature monthly articles by a prominent women's health educator &
SCIENCE OF STORYTELLING
Marleen M. Quint
Women’s Health Advocate
a kid in the 60’s, I remember a slogan from DuPont: "Better
things, for better living, through chemistry." the time it
invoked confidence and hope for the future. Now, it just gives many
of us the creeps. Have you noticed that science keeps generating
more and more technology for the benefit of mankind yet the public
is experiencing less and less of its benefits? Too often research
money comes from wealthy corporations or government agencies with
very specific agendas that usually conflict with public health and
safety. Research results are often marginal at best or junk science
at its worst. The resulting flawed or incomplete research is presented
to policymakers who then say, "See, there’s no concrete
proof that small doses of highly poisonous chemicals individually
or collectively will eventually kill you, therefore, there’s
no reason to keep these chemicals from being systematically pumped
into your land, air and water. That‘s the price you pay for
progress." Public health officials then blame us for our own
diseases by telling us we’ve been making poor life style choices.
This cycle of inconclusive science translated into ineffective policymaking
has been an accepted process in this country for generations. It
has always given government and industry a license to compromise
the public’s well-being. The result in the 21st century is
an environment that has become so toxic you can’t buy a can
of brand-named tuna without the guarantee of ingesting dangerous
levels of mercury, or buy a new shower curtain without knowing that
the vinyl chloride you’re breathing in is highly carcinogenic,
or walk outside your house without the fear of inhaling a number
of toxic air particulates. The time is long overdue to change the
approach of environmental research and policymaking.
health and environmental activists have finally been tentatively
invited to join scientists and policymakers in the health research
process. One of the ideas activists have brought to the table is
a more common sense approach to environmental policy called the
"precautionary principle." This principle simply states
that any activity that threatens human health and the environment
should be prevented through precautionary measures even if that
threat is not fully proven through scientific research. The principle
shifts the burden of proof to those creating the risks. It also
demands alternatives to polluting activities and requires public
participation in changing health policies.
Although the precautionary principle originated in the research
arena, it has yet to be widely applied to the research process.
Advocates have been communicating what research they want done but
have not clearly examined how to best conduct such research because
it falls into the domain of science. Scientists, on the other hand,
continue to conduct research according to academic, government and
corporate interests (and not necessarily in that order) because
research protocols haven’t changed much in several decades.
In either case, direct public input is minimal or nonexistent. The
average Joe pays the price for profit and special interest yet is
seldom told the truth about the price he’s paying and rarely
has a real voice in the process.
Science Tell Our Story
I looked-up the word science and found its original meaning to be,
the "state or fact of knowing." The second definition
is, "systematized knowledge derived from observation, study
and experimentation carried on in order to determine the nature
or principles of what is being studied." These definitions
confirmed my belief that the seeking of scientific knowledge does
not have to be confined only to scientists and that today’s
scientific studies are often confined to an unnecessarily narrow
range of knowledge.
There are many communities in the United States that represent geographic
pockets of disease clusters. Scientific study has been generated
in many of these disease clusters with little conclusive results
and often little policy change for the benefit of community members.
Too often lawsuits are the only means of policy change and restitution.
Many consider that too little, too late. You can’t undo the
pain or bring back the dead. It would have been so much cheaper
in the cost of lives, human suffering and money to have acted on
the side of caution and offered a safety net before risking public
If you were to sit down and talk to the people living in these disease
clusters you could gain a wealth of knowledge, often providing great
insight into factors overlooked by researchers, policymakers and
public health officials. There‘s a great deal that can be
found and learned through public records. Information on water,
air and geological history, utilities, business, industry, public
transportation, schools, military history, toxic waste sites and
other sources of information that might reveal a number of possible
pollution sources. A community’s history can help to confirm
the existence of potentially hazardous conditions or chemicals within
the community and also tell you who and where the source of pollution
is coming from. This type of information tells a more complete story
about the elements that make-up a community and better empowers
community members to promote accountability and policy reform.
In addition to expanding research by incorporating historical data,
it is important to include community members in the research process
as well informed support staff. This would potentially be more economical,
more effective, and would keep the public in the loop as informed
participants in the research process. It would also encourage more
public participation in policymaking.
To give a more practical example of storytelling using science,
I would like to contrast and compare two Bay Area locations with
which I’m most familiar, the City of Richmond and Marin County.
I realize I’m comparing a county with a city but for the sake
of illustration I will refer to both as "communities."
At first glance, one would only see the differences between the
two communities. Richmond is poor and has many underserved areas
while Marin is a much wealthier and a better educated community
with many support systems. Richmond has a large minority community
while Marin is predominantly white. Richmond residents nearest the
Chevron refinery have high rates of various cancers, cardiovascular
disease and respiratory disease including high rates of asthma,
especially among children. Marin County, at least on the surface,
does not appear to have particularly high or unusual risk factors
yet it has one of the highest breast cancer rates in the nation.
Although some research has been generated in Marin, very little
conclusive evidence has been found and some of the risk factors
established, in my opinion, are useless. For example, some epidemiological
studies have shown a correlation between breast cancer incidence
in Marin and a high education level. This is obviously a ludicrous
association yet it is frequently included as a risk factor in Marin
County statistics. I can see the Breast Cancer Awareness Day posters
now, "Fight Breast Cancer -- Stay Stupid."
There may be more similarities between the two communities than
previously suspected. Perhaps in looking more deeply into each community’s
history we may find one or more common links. Both communities have
high rates of breast cancer and high disease populations along the
coastlines. Could refinery pollution be affecting both communities
through long-term water, air and geological pollution? Could radiation
through fog and water drifts be a factor? How about a previous history
of radioactive waste dumping in the Bay? If we studied the military
history at the Richmond docks would we find a source of pollution
from the military that may have long-term affects in Marin County
or perhaps other communities in the Bay Area?
We don’t need to have all the answers to know that we are
putting communities at risk for a variety of diseases and disorders
by actively polluting and destroying our living, breathing environment.
Members of disease cluster communities often know all to well the
source of their pollution and its life threatening impact. They
may not be able to identify specific chemicals or give you an academically
eloquent definition of what’s ailing them but they can recall
in great detail what their four-year-old child looked like in a
lung machine. They can tell you the nightmare of being a woman whose
lost both breasts in a breast obsessed society. They can tell you
how frightening and heartbreaking it is to accept that your twelve-year-old
child has been diagnosed with adult-onset diabetes.
The answers to many of these questions may be sitting in some musty
old warehouse waiting to be tapped. There’s no reason why
highly motivated and creative community members couldn’t assist
in gathering existing information, both scientific and historical,
with direction from a qualified research and technical staff. Once
data has been collected, then a meaningful Geological Information
Systems data base (GIS) can be compiled to map the risk factors
shared within a community and between communities. The GIS should
include water, air and geological information combined with relevant
historical data. This map could then be a tool to help identify,
analyze and understand environmental contamination patterns, the
spread of disease and provide other health and environmental information
which can be referenced later in the policymaking process.
Should Get Involved
this point some of you may be saying, "This is all well and
good but I’m not living in a high-risk community; what does
this have to do with me?" First, I would like to make clear
that we are all living in high-risk communities. Virtually all of
our ecology has been compromised. Our most essential and valuable
environmental element has been thoroughly polluted -- our water.
If you drink water from a bottle or a filter instead of from the
tap, then you are aware that your tap water may be harmful to you.
Second, the problems America is having with research and policymaking
is the exact same problems we’re having with doctors and corporate
managed healthcare. Like researchers and policymakers, doctors and
HMOs have very narrow agendas that tend to fragment a patient’s
history rather than integrating it. Physicians seldom ask for a
personal history from a patient beyond the survey-styled form a
patient fills out upon first meeting the doctor. Researchers are
making the same mistakes with community members that doctors make
with patients. They look for specific pieces of information without
integrating it into the larger story to more accurately and thoroughly
approach a complex problem. Both doctors and researchers overlook
the populace as an integral element in the problem solving process.
The health of our environment, like our personal health, is a concern
and responsibility of each and every one of us.
Time Is Now
Once a community knows it's being subjected to hazardous environmental
conditions, then it’s time for that community to find a way
to tell its story through the blend of both scientific and historical
methods. The community will then have better tools than in the past
to demand environmental policy reform and accountability. This is
a relatively simple concept that bridges the world of research and
policymaking with the people most affected by the outcome -- the
American public. A true democracy cannot exist without full participation
from "the people." It is not only important, but essential,
that the public participate in the research and policymaking process.
This will tell a more complete human story to better facilitate
researchers, empower the people and ultimately clean-up our otherwise
ailing planet. Let’s redefine the word "science"
to include flesh and blood people, the real world they live in,
and their untold stories long overdue to be heard.
you have any comments or experiences that you would like to relate
to us regarding this subject, please contact Marleen at MQhealthpge@aol.com
PLEASE NOTE: The
above article must not be published in either electronic form, or
print, or be edited or otherwise altered or used without the express
permission of the author Marleen M. Quint.
All rights reserved..www.wildcelt.com 2005
An Example of the Precautionary Principle at Work: Endocrine
State of the Evidence
What is the Connection Between the Environment and Breast Cancer?,
Breast Cancer Fund and Breast Cancer Action
Communities for a Better Environment (CBE)
1611 Telegraph Ave., Oakland CA 94612, (510) 302-0430
Radiocesium in North San Francisco
Bay and Baja California Coastal Surface Waters
Journal of Environmental Radioactivity (2002)
Alan M. Volpe, Bryan B. Bandong, Bradley K. Esser, Gregory M. Bianchini
Marin Breast Cancer Watch (MBCW)
CLINIC & AYURVEDA SCHOOL - Integrated Medical Clinic &
Ayurveda School is a unique healthcare facility, combining the strengths
and knowledge of both traditional western and alternative medicine
in a holistic manner.
Originally from Hawaii, Marleen was also raised in Japan and Guam.
Her background is extremely eclectic and ranges from working in
the field of cartography to performing as a singer, dancer and actress.
In 1990, Marleen was diagnosed with thyroid
disease followed by breast cancer less than two years later. She
lost both breasts and her thyroid with no family history that would
predispose her to either disease. After much research, Marleen is
convinced that environmental pollution played a significant role
in the development of her life-threatening diseases.
Since 1995, Marleen has dedicated herself as a women's health advocate.
She has served as a consultant for several health organizations
including the National Cancer Institute in Washington, DC and UCSF
Mt. Zion Cancer Center in San Francisco.
Marleen has combined her skills to develop a women's health presentation
which delves into the connections between the politics of gender
bias and the level of morbidity suffered by women. Marleen is an
active speaker in the San Francisco Bay Area.