Federal Health Effects Studies

[Dan Yurman <dyurman@igc.org>]

This article is in the public domain for non-profit purposes. It may be
re-posted to any public data network or copied and distributed in any
paper media without further permission. DY 1/29/97

*** The Quick or the Dead

Reclaiming Accountability for Federal Health Effects Studies
in Communities with Nuclear Weapons Plant Facilities

by: Dan Yurman
 P.O. Box 1569
 Idaho Falls, ID 83403 dyurman@igc.org

 As a result of an open records program initiated by U.S.
Department of Energy (DOE) Secretary Hazel O'Leary, information is being
made available for the first time which is useful in calculating the
radiation and hazardous chemical exposures of worker populations and
ordinary citizens in communities which are home to nuclear weapons
plants and related facilities. Until now few have recognized the
national scope of health effects studies which are likely to become more
significant over time. 

 A virtual constellation of federal health agencies are now
conducting "dose reconstruction" and parallel health effects studies at
Hanford, WA, Idaho Falls, ID, Fernald, OH, and Savannah River, GA.
Other sites will soon follow. The agencies include the Centers for
Disease Control (CDC), National Institute for Occupation Safety & Health
(NIOSH), and the Agency for Toxic Substances and Disease Registry
(ATSDR). 

 While the Department of Energy's open records program has made
these studies possible, the work by federal health agencies has
befuddled citizens groups now isolated from each other by geographic
distance and a lack of understanding that a national health research
program has grown up in their midst without anyone realizing it.
Workers and citizens who encounter researchers from the federal agencies
have asked four common questions.

 -*- are we exposed?
 -*- are we affected?
 -*- did exposures contribute to or cause disease?
 -*- if we are not affected now, will we suffer later?

 It may be difficult for citizens to get answers. The scientific
work being done by these agencies to document and calculate exposures to
radiation and hazardous chemicals is fraught with uncertainty, politics,
organizational confusion, and doubt that anything more than
"inconclusive" results will be the outcome of years of effort. The
responses of federal health agencies have been inconsistent, and in some
cases, outright hostile, in terms of answering the four questions.

 Some of the reasons are lack of funding, weak management, the
arrogance of scientific researchers uncomfortable answering fundamental
questions from lay persons, and the bureaucratic agendas that distract
the focus of otherwise sympathetic agency managers inward like the
gravity field of a black hole.

 Perhaps most daunting is the fact that there is no national
independent clearinghouse that pulls together information on progress
being made or collects and distributes information on lessons learned on
the most effective ways citizens can respond to conduct of health
effects studies and federal agencies. Several efforts which deal
broadly with environmental health studies have been developed such as
the Science and Environmental Health Network (SEHN).

 What has not yet happened is for citizens to organize a national
response to a national program of health effects studies being conducted
at nuclear weapons complex sites. This article suggests a next step for
non-governmental organizations.

 Citizens with basic interests in the outcome of the health
effects studies face several essential challenges.

 * Make sense of the scientific knowledge and methods
being used by federal health agencies.

 * Focus on the four questions of concern which are being
asked by those still living in communities around the site.

 * Pressure federal health agencies which are not doing
their job to get their act together.

 What Should Be Done?
 Developing a National Agenda

 If citizen input using the federal advisory committee process is
to be improved, citizens need to take the initiative. Successful
intervention in the work of federal health agencies will not occur if
people wait for the agencies to "do the right thing."

 The first step could be to convene a national conference of NGOs
and citizens groups to achieve several objectives. These are;

 -*- Understand the current and future scope of federal health
effects studies related to the legacy of the cold war.

 -*- Establish a national agenda involving performance and
qualitative standards for openness, public participation, and
accountability for health effects studies.

 -*- Mount a lobbying campaign with Congress to embed these
requirements in enabling legislation for federal health agencies.

 -*- Develop oversight mechanisms to insure federal health
agencies will remain responsive to their congressional mandates.

 Informing the News Media

 -*- Obtain resources for and roll-out a national communications
strategy to alert the news media about the national health effects study
program. Develop communications tools, such as the Internet, to alert
citizens groups about lessons learned and more effective ways to
interact with federal health agencies.

 A sample story line which might interest nationl news media
could include the following.

* CDC has fielded a "virtual" citizens advisory committee at four
 DOE sites. This is a new form of citizen participation in
 scientific research. For the first time CDC has rolled out a
 national program of public involvement in environmental
 epidemiological studies.

* The committees, composed of ordinary citizens, are grappling with
 one of the most significant environmental health issues of our
 time - the domestic impacts of the legacy of the cold war and the
 nuclear weapons complex.

* CDC, NIOSH, and ATSDR are breaking new scientific ground in
 developing dose reconstruction studies. The ink is barely dry on
 the National Research Council's book on the subject. CDC and the
 citizens are learning how to conduct these kinds of studies.

* The legacy of doubt from past perceptions of how these agencies
 dealt with Superfund sites colors current efforts. Citizens are
 neither trusting of the agencies nor able to work out their
 differences among themselves. The dynamics of organization
 learning are neither easy nor always smooth, but progress is being
 made.

* The outcome of this process will occur over many years. The
 lessons learned will have implications for future generations and
 for other nations such as the former Soviet Union, which has its
 own legacy of nuclear waste and exposure of civilian populations
 to hazardous materials.

 Enhancing Citizen Science

 -*- Develop mechanisms for recognizing the contributions which
can be made by citizens interested in pursuing environmental science.
This should include a training and technical assistance program for
citizen activists on how to collect, analyze, and distribute scientific
information. Most importantly, citizens need help in recognizing the
significance of scientific findings, knowing what to look for, and how
to critically engage scientific experts in dialog which will produce
shared understanding of the results of health effects studies.

 Funding will be needed to insure grass roots participation in
the conference and in the implementation of an action agenda, described
below.

 Creating a Communications Clearinghouse

 A key task will be to develop a clearinghouse of NGOs and
citizens groups. This can be a virtual organization rather than a
physical one, but each NGO must put its oars in the water. The
clearinghouse must put up an Internet presence via email, WEB site,
etc., and also publish a hardcopy bulletin of news, resources, and
action items for a national, coordinated response to federal health
effects studies at nuclear weapons sites. The clearinghouse must
function as an "honest broker" despite the many priorities and agendas
of NGOs and grass roots groups.

 Citizens need to engage federal health agencies in a dialog to
change the behaviors of people as well as their respective
organizations. It makes no sense to address policies without the
people. Hearts and minds of agency staffs, and their contractors,
inevitably follow the leadership of the agency organizations. The
mindset and credibility of federal managers must be examined, and
changed for the better, if the resulting health effects studies are to
be successful in achieving their goals. Citizens can call for
"boycotts" of agencies, such as one group did with ATSDR, but there is
no long term future in death spirals of reciprocal allegations of
deception and rancor. Everyone loses.

 Citizens need to commit to the long haul. Environmental
epidemiological studies ARE like rocket science. Achieving shared
understanding of the scientific methods and citizens' concerns will take
years. After all, the horrors of the nuclear weapons complex took more
than four decades to come to light. It may take a lifetime to recover.

Author ID

Dan Yurman is a member of a citizens advisory committee chartered
under the Federal Advisory Act which advises the Centers for 
Disease Control on health effects studies being conducted at the 
Idaho National Engineering Laboratory, Idaho Falls, ID. The views
expressed in the article are his own.