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Chapter 5
ISSUES RELATED TO
ADMINISTRATION AND COORDINATION
Public Law 95-623 specifies agencies within the federal
government that are to cooperate witch the National Academy of
Sciences and the Department of Health and Human Services (DHHS) as
the ongoing study is conducted. 1 They are: the Environmental
Protection Agency (EPA), the Department of Labor, the Consumer
Product Safety Commission (CPSC), the Council of Economic Advisers
(CEA), the Council on Wage and Price Stability (COWPS), and the
Council on Environmental Quality (CEC). Other entities of the
federal government that the Secretary of PHS determines to have
appropriate expertise must also be included.
However, groups other than federal agencies and health financing
groups may have useful data. For example, industry, labor, academic
institutions, and private research groups collect relevant data and
have particular interests in the goals of the ongoing study. State
and local governments collect large amounts of information in the
course of carrying out environmental programs.2,3
International sources may be rich for some kinds of
information. Various international groups, such as the International
Agency for Research on Cancer and other parts of the World Health
Organization, collect and analyze data on environmental hazards.4
In addition, certain kinds of epidemiologic studies are conducted in
countries such as Sweden and Norway more east ly than in the United
States, partially because these countries have individual personal
identifying numbers and researchers can link a variety of records for
person. ~ Although England does not have identifying numbers, its
centralized health system provides a similar advantage, because
health and census information can be linked. 5,6, 7
Federal agencies are likely to have a major role in conducting
the ongoing study and supplying and using the data and reports.
However, the ongoing study's usefulness could be broadened by
considering the needs of the various other groups, including public
interest and consumer groups and private voluntary health groups, and
by insuring that they play an active ro le in the study .
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This chapter considers first some of the major factors within
the federal bureaucracy that affect the administration and
coordination of the ongoing study. In view of these factors, a list
of administrative options is presented, although P.L. 95-623
designates DUBS as the lead government agency for conducting the
study.
A discussion of the special concerns and insights of some
speci f i c groups fat lows the discussion o f federal ~ issues. The groups
share many of the same problems, such as a need for materials for
public education.
ISSUES AT THE FEDERAL LEVEL
Coordination Among Federa 1 Agenc ie s
P.L. 95-623 requires that this planning study deal not only with
the substantive issues of environmental hazards and their health
costs, but also with the problems anticipated in coordinating the
collection of information both by federal agencies and other
institutions.
On a subject as broad as the impact of environmental factors on
health, it is to be expected that the available scientific and
economic data will not give a coherent or exact picture of the total
problem. Even with the best statistical basis imaginable,
administrators and political leaders would still have to exercise
much discretionary judgment in making policy decisions in such a
difficult arena. But the great mass of statistical data on which
scientific analysis must now rely was not collected specifically for
the purpose of this study, or by scientists who were concerned with
its objectives.
The data instead were collected as by-products of various
service functions, or to help in research undertaken for other
purposes, or to serve as the basis for various environmental and
health regulatory programs.2, 3,8 Some of them were provided by
private corporations, responding to regulatory demands; others by
state and local governments incidental to various programs and
purposes; and some by independent scholars following their own lines
of interest. The National Center for Health Statistics (NCHS) has
issued a document that catalogues some of the various data collection
systems that may be useful for environmental health purposes, and its
work documents both the importance of various federal systems and
some of their deficiencies for the purposes of the proposed ongoing
study.8
Even if each of these sources did its job perfectly, according
to its own likes and purposes, the result would be less than a
systematic and coherent body of information for the purposes of the
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ongoing study. This collection of programs is subject to the
administrative and political limitations inherent in the U.S.
governmental system, which, by design, has never been a completely
integrated one and which now relies heavily on contracts with private
institutions to carry out its programs.9
The committee cons idered how the future ongoing study might use
the statistics produced by this kind of system to answer the
difficult questions posed by P.L. 95-623. Should That study
undertake to devise ways not only to use the existing statistical
data, but also to improve them? If so, how fundamental a set of
changes could the committee reasonably propose, considering that too
high a standard not only would entail the sacrifice of other values,
but also would require major administrative or political changes far
beyond the bounds of feasibility?
The TOM planning committee suggests that the ongoing study:
o identify the major administrative and policy problems that
make difficult the provision of an adequate statistical data
base
o explore the range of measures that could be adopted within
the limits of the present administrative and legal system
o recommend whatever changes in organization and procedure
seem necessary to accomplish the apparent intention of
Congress and the administration.
Major Problems
Policy disagreement General policy or political disagreements
make the goals of the proposed study more difficult to attain. There
is (1) a desire to expand and improve the available statistical data,
as against a desire to reduce the burden of paperwork on public and
private institutions;l~l° (2) a desire to provide more effective
regulation of environmental hazards and threats to health, as against
putting less of a regulatory burden on the economy; 12 and
(3 ~ a desire to provide financial support for the necessary research
and data collection, as against the current budgetary pressures on
the federal government.
Confidentiality Issues of confidentiality and privacy abound in
these matters. Epidemiologic research is handicapped by the desire
of the medical profession and others to protect the privacy of
patients. Research data on some problems are almost impossible to
collect because those responsible for collecting the information want
to protect the privacy of individuals against the exposure that the
Freedom of Information Act would make possible. 13 For example, the
possible presence of particular genetics traits among groups or
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individuals is sometimes considered unsuitable for the public record
because of the threat to their employability or insurability.
Although some types of data can be modified to enable their use
without violating either individual or industrial confidentiality,
the modification virtually assures that data from several sources on
a person cannot be linked to help identify the causes of disease.
Many factors inhibit data sharing, but problems with
confidential information are major impediments. Not only are there
rules against agencies letting confidential information out of the
government, but also strict limits against sharing confidential
information among agencies. Recent bills, moreover, have undertaken
to guarantee that data collected, for example, in the Bureau of Labor
Statistics, would not be made available outside of the collecting
agency.l4 Various studies have discussed the problems.5~15-18
In one study, ~ subcommittee of the Toxic Substances Strategy
Committee convened by the Council on Environmental Quality, examined
the confidentiality provision of 14 major statutes that deal with
Pollutants and toxic substances, as well as agency practices based on
the statutes.l5,l6 The subcommittee considered confidentiality
issues related to interagency data sharing; agency data sharing with
contractors' public disclosure of confidential health, safety, and .
efficacy data ~ and disclosure of confidential info`-~uation in
administrative proceedings. In many ways, these federal laws were
deemed inconsistent in their treatment of confidential information,
or led to inconsistent interpretation.
The subcommittee reported that current federal laws do not
appear to permit agencies to share confidential information with the
states, nor to assure individuals access to information about
chemicals to which they are exposed. However, the general trend in
recent legislation, particularly the Toxic Substances Control Act
(TSGA) and the Federal Insecticide, Fungicide and Rodenticied Act
(FIFRA), is to accord the public more right to confidential
information related to health than to g.enera1 confidential
information.
Several studies and ef forts have been undertaken to facilitate
sharing of data among federal agencies.18~19,20 One effort would
permit formation of statistical enclaves so that certain federal
agencies, such as the Bureau of the Census, the Social Security
Administration, the National Center for Health Statistics, and
others, could exchange data.
Legislative efforts have addressed some of the issues of privacy
and confidentiality. Legislation in this area could alter the
ability of researchers to obtain information.
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o The Paperwork Reduction Act creates within the Office of
Management and Budget (OMB) a central Office of Information
and Regulatory Af fairs with the authority to review requests
that government agencies make for information from the
public. 10 Some epidemiologists are concerned that such a
bill may limit their research.
O A bill introduced in August 1980, (S. 3011~) would have
authorized the Veterans' Administration (VA) to approve the
re lease of name and address information from VA records
systems to qualified non-federal researchers.20 This bill
would have permitted use of VA data bases for many
epidemiologic studies. These data bases would be useful
because they began with a well-defined population that was
relatively healthy upon entering service.
O The Medical Records Privacy Act, (H.R.5935) and a comparable
Senate bill (S.503) sought to protect the confidentiality of
health care information and to establish procedures for
patients to gain access to their own records.21,22
o The Labor Statistics Confidentiality Act (S.2887), would
have assured confidentiality of material the Bureau of Labor
Statistics receives under a pledge of confidentiality.14
Differing purposes of data collection The specialized purposes
of various programs from which data may be required, and the
specialized interests and commitments of the personnel administering
the programs, may make it difficult to provide comparable and uniform
coverage of information for any such broad effort as the ongoing
study. This is in part the result of the different approaches of
people who want data for regulatory purposes in contrast to those who
want them as a basis for determining how to provide various services,
or to provide information for scientific research. Many data also
are obtained as by-products of administrative processes. Federal
agencies may fai 1 to require their contractors to supply data that
can also satisfy regulatory demands, or they may impose standards of
data collection that vary widely among areas or are inconsistent with
other goals . For example, employees in nuclear energy plants are not
required to keep personal records of their radiation
exposures--including non-occupational exposures--although their
employers are required to keep records of exposures occurring at the
works ite .
People in various disciplines, such as epidemiology or labor
economics, have different perspectives and interests related to the
collection of data. As a result, the data collected in diverse
disciplines often are not comparable. Also, rapid changes in
scientific methodologies and in technological or social programs make
it hard to get a fixed data base for purposes of comparability. For
example, it is unlikely that the definition of an area around the
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Three Mile Island nuclear plant in which only limited population
would be permitted was determined with adequate care and
consideration of contemporary realities. 23
To answer the questions posed by P.L. 95-623, or, indeed, to
provide a basis for environmental or health regulation under existing
programs, it is necessary to get data from agencies that have other
missions and other priorities. In a per' ad of budgetary pressure
they are likely to resist adding to their burdens, especially when
the OMB or an appropriations subcommittee may not sympathize with too
broad an interpretation of their scientific research interests.
State and 1 canal ; n~c~lvement M~nv of the r~ro~ram`:: for the
protection of the environment and of the public health are not
federal, but are state or local and have wide variation in their
policies and administrative effectiveness. Some have been
handicapped by difficulties in legal enforcement, as in problems of
toxic waste disposal; others are limited by inadequacies in funding
or in the quality of their personnel. In dealing with such problems,
the federal agencies can do little in such matters without resorting
to specific categorical grants, which have their disadvantages and
now meet with political opposition.
Statutory authority and interagency groups Finally, even though
P.L. 95-623 assigned certain responsibilities to the National Center
for Health Statistics for issuing guidelines for collecting and
compiling environmental health statistics, these are overlapping
responsibilities assigned by other statutes to other coordinating
authorities, especially the Office of Federal Statistical Policy and
Standards, in the Department of Co~erce at present.2,10, 24, 25
If the specific statutory authority and responsibility of a
department head comes into conf 1 ict with a more general
responsibility for coordination assigned by statutes to a subordinate
officer of another department, the coordination is not likely to be
very ef fective unless it is supported by the constitutional or
political authority of the President or the congressional leadership.
On this subject, the President may not be personally involved,
and various institutions in his Executive Office may play roles that
are not always in harmony. Similarly, various congressional
co~nmit~tees and staff institutions are interested in one way or
another in this problem, and there is no c lear-cut procedure to
resolve their dif ferences .
In addition, there are over two dozen interagency groups, some
made up primari ly of working scientist s and others of administrators
at various hierarchical levels, that have undertaken to work for the
improvement of the regulatory process and the data base on which it
must be built. 26' 27 Some of these groups and committees have been
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set up by statute, others by executive order, others by informal
collaboration and agreement. Appendix D lists some of these groups
and their major purposes.
To put the issue in perspective, it is necessary to recognize
that the government deals with many major issues by the use of
similarly inexact data, and without a completely unified system of
legal authority. It does so by informal methods of cooperation,
sometimes on the basis of scientific and professional standards and
under the stimulus of scrutiny and criticism by private institutions.
Recommended Anuroaches
The ongoing study must decide :
o how much to rely on cooperation among existing agencies and
institutions
o how much to propose substantial legislative action or
administrative reorganization to develop a better data base
for policy decisions.
Voluntary cooperation The ongoing study should begin with the
more modest approach, identifying those specific problems of
environmental pollution or other conditions that the study finds to
be of the highest priority. With respect to each of those problems,
it should be possible to identify the various sources of statistical
information and the difficulties of filling gaps and removing
inconsistencies. To the extent that the difficulties can be solved
by voluntary cooperation at an administrative or scientific level in
the hierarchy, it should be possible to suggest appropriate
approaches.
Additional actions If consideration of the several higher
priority problems suggests that voluntary cooperation is inadequate,
several options exist, ranging from reorganizing interagency
committees to involving the Executive Office of the President.
a) It might be desirable to rationalize the present apparently
disorderly structure of interdepartmental and interagency
committees. With respect to the several problems that are
considered most important, are these committees the right
-ones? Are they organized at an appropriate level in the
hierarchy, with respect to the distinction between
scientific and administrative subject matter? Do they have
the required backing of authority if the issues involved
require decisions of a regulatory or financial nature?
Interagency committees often work well in collaboration on
issues of a scientific and professional nature that do not
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involve conflicts of agency policies. Where such conflicts
exist, the committees may be ineffective unless they are
under the effective guidance and direction of higher
political authority, and unless that authority is in a
position to insist on agreement without being constrained by
conflicting statutory requirements or political pressures.
As the ongoing study proceeds, it may wish to consider
recommending that some part of the Executive Office of the
President (perhaps the Office of Management and Budget, or
the Office of Science and Technology Policy, or some
cooperative arrangement between the two) establish a system
for monitoring on a continuous basis the activities of the
continuing committees and the temporary interdepartmental
task forces that deal with health problems related to the
environment. If such an arrangement should be established,
it would be more effective to encourage short-tenm and
informal committees to operate by consensus rather than to
attempt to create committees that might assume that they
could exercise actual authority by majority vote, which
cannot be expected to carry weight against the main lines of
statutory hierarchical authority.
b) Special funding arrangements may be necessary. A major
source of difficulty may well be the reluctance of agencies
to fund the research or data collection required for
purposes outside their central statutory responsibilities.
This is not necessarily a matter of ill will; it is often a
result of constraints enforced by the OMB or appropriations
subcommittees. Is it possible to devise ways to pay for the
collection of data of high importance through some special
fund or special financial procedure? There may be a wide
range of possibilities here that need to be explored. For
example, OMB may need to create some special procedure in
its process of the review of estimates. Or DUBS or EPA may
need to be given a special fund for supplementary grants for
the production of data of general relevance. Or perhaps
agencies involved in the support of general research, such
as the National Science Foundation or the National
Institutes of Health, might be given control of, or a
special advisory relationship to, expenditures from some
such special fund.
c) Although no specific instance is suggested, the ongoing
study may discover programs of data collection that could be
administered better if consolidated or transferred from one
agency to another.
d) On issues such as those noted above, which involve concerns
broader than those of individual departments or agencies,
the only executive authority available may be that of the
Presidency. There is no guarantee, however, of a unity of
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approach within the Executive Office. Nor can such unity of
approach be mandated effectively by legislation, or
realistically be expected to develop as a result of
bureaucratic conflict and political controversy. The
Regulatory Analysis Review Group and the Regulatory Council,
for example, come at the problem from different points of
view and with different preoccupations.* The Office of
Management and Budget may be concerned from the point of
view of the efficiency of the various operating agencies and
interagency committees involved, or the reorganization or
transfers of programs. The Council of Economic Advisers and
the Office of Science and Technology Policy have
contributions to make from their professional points of
view, under appropriate executive guidance.
It is hard to imagine any effective resolution of the problem of
encouraging cooperation among agencies without at least broad
guidance and support from the President, in collaboration with
congressional leadership. me ongoing study may find itself obliged
to inquire how much authoritative and cooperative action may be
developed.
"Under Executive Order 12044, agencies are required to publish
semi-annual agendas of all upcoming regulations and to prepare
"regulatory analyses" of all regulations projected to have an annual
effect on the economy of $100 million or more.l2 These analyses
are to include a description of the major alternative ways of dealing
with the problems that were considered by the agency, an analysis of
the economic consequences of the alternatives, and a detailed
explanation of the reasons for choosing one alternative over the
others. These analyses are published In the semiannual Calendar of
Federal Regulations.
President Carter created the Regulatory Analysis Review Group (RARG)
to review ten to twenty of these analyses each year. In practice,
RARG operates as a joint venture of CEA, COWPS, and OMB.28,29
The Regulatory Council was formed in October 1978 to coordinate
federal regulatory policy. The Council consists of the heads of
36 regulatory agencies and is chaired by the Administrator of ~PA.
It has taken over and expanded some of the activities required under
the regulation review program, such as publication of the semiannual
Calendar of Federal Regulations. It has also commissioned studies on
assessing benefits of regulation.28,29
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The Process of
Administration of the Ongoing Study
The planning study committee observes that P.L. 95-623 specifies
DHHS as the lead federal government agency for the ongoing study, and
the committee considers this an appropriate choice. In Chapter 6 of
this report, the committee makes specific recommendations for
appropriate administrative arrangements. However, if DHHS were not
designated as the lead government agency, other groups within the
federal government might serve in that role. Table 5-l briefly lists
various possibilities using three approaches:
0 the lead agency approach
o the interdepartmental committee approach
o the Executive Office of the President approach.
The list is not exhaustive.
Because of the limitation imposed by P.L. 95-623, the committee
has not considered these other possibilities in detail and is,
therefore, not prepared to choose among them. Nonetheless, the table
may help to point out the contributions that these groups could make
to the ongoing study.
TABLE 5-1. ADMINISTRATIVE OPTIONS: POSSIBLE ADMINISTRATIVE
ARRANGEMENTS WITHIN THE FEDERAL GOVERNMENT FOR THE ONGOING
STUDY OF COSTS OF ENVIRO~ENT-RELATED HEALTH EFFECTS
I. THE LEAD-AGENCY APPROACH. To arrange continuing cooperative
work on an interagency problem, one device is to give some agency
with predominant responsibility the lead, and authorize it to
organize more or less formally a committee or task force of those
agencies concerned.
A. At the scientific or professional level.
Approach
1. National Center for
Health Statistics,
(within DHHS)
Advantages
Most directly con-
cerned and best
informed; designated
in relevant statute
as having continu-
ing responsibility
in field.
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Disadvantages
Lacking in
political author-
ity over the
agencies whose
cooperation would
be required.
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(Approach)
2. National Institute
of Environmental
Health Sciences,
other institutes
of the National
Institutes of
Health, the Centers
for Disease Control
(CDC). (All these
are part of DUBS.)
3. Office of Federal
Statistical Policy
and Standards,
Department of
Commerce.
Under provisions of
Paperwork Reduction
Act, to be
transferred back
to OMB.
B. At the political level
(Advantages)
Has interest and
some of necessary
expertise.
General statutory
authority to
coordinate statis-
tics throughout
government.
Its functional
assignment would
perhaps correspond
to the purpose of
the ongoing study.
.
(Disadvantages)
Lacking in
political
authority over
the agencies
whose coopera-
tion would be
required.
In Commerce,
needs to rely on
OMB for support
for enforcement.
It is difficult
to know whether
it would be
given the staff
and the support
to take on such a
responsibility.
Approach Advantages Disadvantages
4. Secretary of Health
and Human Services
The Cabinet member,
with the status and
access to Presidential little time per-
support that that venally to devote
implies, with the to such inter-
heaviest responsi-
bilities in this
field (Food and
Drug Administration
(FDA), National
Cancer Institute
(NCI), CDC, etc.~.
Heavy stake in
success of effort.
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Department heads
usually have
agency efforts;
the Secretary
would need to
delegate
responsibility.
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Environmental Problem Areas
l
Non-federal regulators can provide the ongoing study with
timely sense of the environmental pollution problems that may
constitute the starting points for organizing data on health
effects. There is fairly consistent agreement about the major
environmental pollution issues for the next several years. They
include the contamination of water supplies by industrial chemicals
and solvents, and air pollution from industry and utility operations,
especially in large-scale conversions to coal. In coastal areas,
such as Virginia, there is particular concern that people may eat
seafood contaminated with toxic chemicals stirred up in dredging.
Industry and Labor*
Because the ongoing study will include costs of occupational
disease, it should be conducted in close consultation with leaders of
labor and industry. They will have points of view on the industries,
hazards, and health conditions that most require surveillance, and
they may also have useful suggestions of study designs for
occupational disease surveillance and methods of estimating the costs
of occupational illness.
To insure participation and representation of these groups, the
Secretary of HHS could establish a mechanism for periodic
consultation, preferably tripartite in nature, with leaders of
industry and labor in the course of the ongoing study.
In addition, the ongoing study should consider the possible
utility of data sets on occupational hazards, disease, and death that
are collected by some industrial firms and by some local, national,
and international labor unions. Broad-scale governmental data may
underestimate the incidence of non-fata1 diseases and of pre-morbid
dysfunctional conditions related to occupational exposures,37,38
but data sets collected by labor and industry may provide more
accurate information on the incidence of such conditions.39~44 As
the ongoing study encourages analyses of these data, hazardous
conditions may be identified rapidly, thereby providing an early
opportunity to protect workers and the general population from
extensive exposure.
A variety of surveillance programs have been developed by labor
and industry.39~44 These range in complexity and degree of
development from hazard checklists to sophisticated longitudinal
*This section draws on a workshop on occupational health
surveillance held on April 8, 1980 as part of the TOM planning
study. Representatives from government, labor, and industry
participated.
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noted:
computer-based systems that enable direct linkage of exposure data,
physical examination results, laboratory determinations, and,
ultimately, death certificate data.
The shortcomings of labor- and industry-based data must also be
o because the data are specific to a firm, or industry, or
group of workers, they may not be easily ~generalizable
o because many occupational surveillance systems cease
coverage at the time of worker retirement, and because most
such systems do not follow "early leavers" from an industry,
they will tend to underestimate the frequency of diseases
with long latency and diseases that occur in vulnerable
subgroups of workers who may have been unable to tolerate
noxious workplace exposures for more than relatively short
time periods.
The ongoing study should remain aware of occupational
surveillance programs conducted by labor and industry and
particularly of innovative developments in the area by means of the
aforementioned mechanism of periodic consultation. In addition,
special occupational surveillance programs by labor and industry
could be encouraged, perhaps by special funding or other inducements.
Public Interest Groups*
Public interest groups may draw upon the data of the ongoing
study for litigation, rule-making petitions, testimony before
Congressional committees to advise on new and existing statutory
authorities, and for public education.
The groups wish to have cost information to make their cases.
Even when data about hazards are available, public interest groups
realize that they have little chance of effecting change unless they
can estimate the costs to society from the continued presence of the
hazard of concern. They suggest that the ongoing study set up
systems for collecting and analyzing health effects data and health
cost data in a coordinated manner.
Two major problems limit the access of these groups to
government information. One aspect of the access problem deals with
confidentiality of data that contain trade secrets. Such data may be
couch of the information for this section comes from a workshop
attended by representatives of approximately a dozen public interest
groups held in Washington, D.C. on January 15, 1980 as part of this
TOM planning study.
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gathered, for example, under safety requirements for the Resources
Conservation and Recovery Act or under TSCA.12~45 It is recognized
that the needs of public interest groups for information sometimes
conflict with industry's need for confidentiality. Nonetheless,
public interest groups need data--and numerical data whenever
possible--in order to develop and support their positions. Federal
agencies could consider ways to mask (perhaps by aggregation)
specific data that would jeopardize competitive standing so that they
can be made available to public interest and other groups to analyze
and evaluate.
A second problem is the difficulty in knowing what data exist
and are available, given the vast array of federal agencies
collecting relevant data. The ongoing study might consider ways of
keeping public interest groups and other groups informed and
up-to-date on available data.
Data from the ongoing study may have many uses, but public
interest groups particularly would like data applicable to educating
the public about complex aspects of environmental health issues--the
chemistry of pollutants, the health effects of environmental hazards,
the economics of pollution and health effects, and, then, the
implications for public policy, public regulation, and public
administration. The ongoing study would be especially useful to
these groups if some part of the resulting publications were directed
toward general public education in these matters and widely
distributed.
Public interest groups also want information on existing and
developing methodologies for assessing the extent of the public's
risk, including procedures, assumptions, and limitations. Of
particular importance are methodologies of identifying and analyzing
synergistic effects among the many substances persons encounter.
These groups support the ongoing study~s mandate to cover a broad
range of health problems, including those of especially susceptible
populations.
Private Foundations
and Voluntary Health Organizations*
Private foundations and voluntary health organizations need
current information about the burden of disease, particularly of the
Organizations queried for this section include: The Arthritis
Foundation, the American Medical Association, the Josiah Macy
Foundation, the American Cancer Society, the American Heart
Association, the American Lung Association, the March of Dimes Birth
Defects Foundation, the American Red Cross, the National Center for
Health Statistics.
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diseases of their special interest. Many such institutions support
investigations, and in a few instances have conducted their own
investigations into the epidemiology and costs of disease. Few,
however, have the resources or technical capability to sustain an
independent data source upon which to base fund-raising campaigns,
scientific or service program plans, public policy recommendations or
materials for health education.
These organizations obtain most of their data from existing
federal agencies, such as the National Center for Health Statistics
and the National Cancer Institute, and from the medical and public
health literature. Data on costs of disease are used primarily for
fund raising and public policy recommendations. There is little
allocation of resources for purposes of developing or refining
methodology.
In the development of an ongoing study of the costs of the
health effects of environmental hazards it would be desirable to have
the agreement of these private foundations and voluntary agencies as
to the principles and procedures of collection, analysis, and
presentation of data. However, they could present their own
interpretation of the data. Because the organizations have widely
differing technical capabilities in the areas of biostatistics,
epidemiology, and health economics, it would not seem practical to
construct a formal data subgroup of these organizations. Their
advice should be sought, and they should be invited to participate in
ongoing study systems in areas of their expertise.
International Organizations
The study should maintain liaison with major international
organizations concerned with environmental aspects of health. These
include the World Health Organization (WHO) Division of Environmental
Health (Geneva), the WHO D' vision of Occupational Health (Geneva),
the WHO International Agency for Research on Cancer (Lyon) , the
United Nations Scientific Committee on the Effects of Atomic
Radiation (Vienna), the United Nations Environmental Program
(Nairobi), the International Atomic Energy Agency (Vienna), the
International Commission on Radiological Protection (London), the
International Commission on Protection Against Environmental Mutagens
and Carcinogens (Leiden), the International Onion Against Cancer
(Geneva), the Permanent Commission and International Association on
Occupational Health (London), and the Pan American Health
Organization (Washington). Of relevance are the annual Yves Biraud
Seminars on Environmental Health, held in Taloix, France and
sponsored jointly by the Rockefeller and Merieux (Lyon) Foundations.
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EDUCATION Aid INFORMATION DISSEMINATION
The ongoing study can fill an educational need for various
groups by providing data and analyses that are consistent and
comprehensible. To the extent that it is successful in meeting these
goals, the ongoing study can help to eliminate the confusion that has
sometimes resulted from various representations of the burden of
illness attributable to environmental factors. ~
The ongoing study can also note other sources of information
scattered throughout the private and public sectors. Various efforts
are underway to organize information within the federal government
related to environment and health, and to disseminate the information
widely. Two particularly useful examples are 1) publications of the
Task Force on Environmental Cancer, Heart, and Lung Disease;46~47
and 2) the Regulatory Calendar.29~48
The Task Force was established in accordance with Section 402 of
P.L. 95--95 (Clean Air Act Amendments of 1977) to recommend and
coordinate federal programs concerned with reduction of
environmentally related cancer and heart and lung disease. It has
published an inventory of relevant research programs in its eight
member agencies.47 Of 115 research programs divided among 15
subject categories, only 4 programs are in the category "estimating
costs of environment-related illness."
The Regulatory Calendar is published semiannually, in May and
November, by the Regulatory Council and describes some regulations
under development by member agencies.29,48 Subject headings
include energy, environment and natural resources, and health and
safety.
Agencies submit entries to the Calendar according to several
criteria, including regulations that have an annual effect on the
economy of $100 million or more, those of great public interest, and
those that will impose a major increase in costs or prices for
individual industries. Each entry contains information on the
statement of the problem, alternatives under consideration, summary
of costs and benefits, and collaborative efforts related to the
problem.
The Calendars dated May 1980 and November 1980 have much
additional info`~nation.29~48 Indices list approximate dates of
future steps related to rulemaking, such as public comment periods or
issuance of an Advance Notice of Proposed Rulemaking. Thus,
interested groups can use the calendar to plan for their
participation in the rulemaking process, starting at the beginning.
Furthermore, an appendix provides information about public
participation in the regulatory process, indicating those agencies
that have funds available for public participants.
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REFERENCES
Health Services Research, Health Statistics, and Health Care
Technology Act of 1978. Public Law 95-623. 42 USC 201.
2. U.S. Department of Commerce. Office of Federal Statistical
Policy and Standards. A Framework for Planning U.S. Federal
Statistics for the 1980s. Washington, D.C.: U.S. Government
Printing Office, July 1978.
3 . National Research Council. Environmental Monitoring. A Report
to the U . S . Envi ronmenta 1 Protect ion Agency f ram the Study Group
on Environmental Monitoring. Washington, D.C.: National
Academy of Sciences, 1977.
World Health Organization. International Agency for Research on
Cancer. IARC Monographs on the Evaluation of the Carcinogenic
Risk of Chemicals to Humans. Chemicals and Industrial Processes
Associated with Cancer in Humans, Volumes 1-20, Supplement 1.
Lyon: IARC, September 1979.
5. U.S. Department of Health and Human Servicese National Center
for Health Statistics. The Person-Number Systems of Sweden,
Norway, Denmark, and Israel. DENS Publication No.
(PHS)80-1358. Washington, D.C.: U.S. Government Printing
Office, June 1980.
6. Fox, A.J. The Role of OPTS in occupational epidemiology: some
examples. Annals of Occupational Hygiene 21:393-403, 1979.
7. Fox, A.J. Prospects for measuring changes in differential
mortality. Paper presented at the World Health Organization
Meeting on Socioeconomic Determinants and Consequences of
Mortality, Mexico City, June 19-25, 1979. -
8. U.S. Department of Health and Human Services. National Center
for Health Statistics. Environmental Health: a Plan for
Collecting and Coordinating Statistical and Epidemiologic Data
~ .
~30-1248. Washingto :~, D.C.:
U.S. Government Printing Office, 1980.
9. Smith, B.L.R. The New Political Economy: The Public Use of the
Private Sector. flew York: John WileY and Sons. 1975.
10. The Paperwork Reduction Act of 1980. Public Law 96-511
(December 11, 1980), 94 Stat. 2767.
1 1. Executive Order 12044, Improving Government Regulations . 43
Federal Register, p. 12661, March 24. 1978.
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12. See Appendix B of this report: Table of Major Federal Laws
Relating to Environmental Quality and Health.
13. The Freedom of Information Act (FOIA)~5 USC 552), as amended in
1974 and 1976, requires agencies to make documents available with
some exceptions.
U.S. Congress. Senate. S.2887, the Labor Statistics
Confidentiality Act. 96th Congress, 2nd Session, 1980.
Council on Environmental Quality. Report to the Toxic Substances
Strategy Committee by the Subcommittee on Trade Secrets and Data
Confidentiality. 1978. Unpublished.
16. Council on Environmental Quality. Toxic Substances Strategy
Committee. Toxic Chemicals and Public Protection. A report to
the President by the Toxic Substances Strategy Committee.
Washington, D.C.: U.S. Government Printing Office, 1980.
17. U.S. Department of Health and Human Services. National Center
for Health Statistics. Environmental Health: A Study of the
Issues in Locating, Assessing, and Treating Individuals Exposed
to Hazardous Substances. DHHS Publication No. (PHS)81-1275.
Washington, D.C.: U.S. Government Printing Office, 1981.
18. Federal Statistical System Project Staff. Improving the federal
statistical system: report of the President's Reorganization
Project for the Federal Statistical System. Statistical Reporter
197-212, May 1980.
19. Beebe, G.W. Record linkage systems--Canada vs. the United
States. American Journal of Public Health 70:1246-1248, 1980.
20. U.S. Congress. Senate. S.3011, a bill to amend Title 38 of the
United States Code to authorize the Administrator to approve the
release of name and address information from Vt records systems
for the purpose of bona fide research. 96th Congress, 2nd
Session, 1980.
21.
U.S. Congress. House. H.R.5935, the Federal Privacy of Medical
Information Act, 96th Congress, 1st Session, 1979.
U.S. Congress. Senate. S.503, a bill to amend the Privacy Act
of 1974 to privide for the confidentiality of medical records.
96th Congress, 1st Session, 1979.
Behavioral Effects Task Group. Report of the Public Health and
Safety Task Force on Behavioral Effects. In Staff Reports to the
President's Commission on Three Mile Island. Reports of the
Public Health and Safety Task Force, pp. 257-308. Washington,
D.C.: U.S. Government Printing Office, October 1979.
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24. Office of Management and Budget. Statistical Policy Division.
Statistical Services of the United States Government.
Washington, D.C.: U.S. Government Printing Office, 1975.
25. Duncan, J.W. Recent developments in reorganization of
statistical policy. Statistical Reporter, 157-167, April 1980.
26. Task Force on Environmental Cancer and Heart and Lung Disease.
Directory of Federal Interagency Groups Concerned with
Environmental Health. Gaithersburg, MD: GEOMET, Inc.,
Apri 1 1980.
27. U. S. Environmental Protection Agency. Directory of Federal
Coordinating Groups for Toxic Substances, 2nd Edition. Toxics
Integration Information Series. EPA-560/13-80-008, March 1980.
28. De Muth, C. C. Regulatory Costs and the Regulatory Budget.
R-79-03, KSG No . 75D. Prepared as part of the faculty pro ject on
regulation, Kennedy School of Government, Harvard University.
December 1979.
29. United States Regulatory Calendar. Calendar of Federal
Regulations . Washington, D. C.: U. S . Government Printing Of fice ,
May 1980.
30. General Accounting Office. Federal-State Environmental
. .
Programs--The State Perspective ~ CED-80-106. Washington, D. C.:
U. S. Government Printing Office, August 22, 1980.
31. Clean Air Act Amendments of 1977. Public Law 95-95. 42 USC 7401
et seq.
32. U. S . Department of Commerce. Bureau of the Census.
Environmental Qual ity Contra 1. Governmental Finances: Fi sea 1
Year 1977-78. State and Local Government Special Studies No.
97. Washington, D.C.: U.S. Government Printing Office, 1980.
33. Council on Environmental Quality. Environmental Quality. The
Tenth Annual Report of the Council on Environmental Oual ity.
Washington, D.C.: U. S. Government Printing (office, December 1979.
34. Gaston, J.M. (California Department of Health Services, Sanitary
Engineering Section, Berkeley, CA. ~ Statement submitted to the
TOM Workshop for State and Local Environmental Health Officials,
held as part of this ION planning study in Washington, D.C.,
March 26, 1980.
35. Summary of the [California] Department of Health Services
Activities Relative to the DECP contamination of Groundwater
Supplies. Statement prepared by J.M. Gaston, (California
Department of Health Services ~ . Undated .
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36. El-Ahraf, A. and Baca, T.E. The administration of state
environmental programs--who is responsible? Paper presented at
the American Public Health Association Annual Meeting, Los
Angeles, CA, October 19, 1978.
37. U.S. Department of Labor. Occupational Injuries and Illnesses in
1979. USDL-80-726. Washington, D.C.: U.S. Department of
Labor. News Release, November 20, 1980.
38. U.S. Department of Labor. An Interim Report to Congress on
Occupational Disease. Wasington, D.C.: U.S. Department of
Labor, June 1980.
39. Dixon, E.M. (Celanese Corporation.) Health Surveillance. Paper
presented at meeting of the American Lung Association
Occupational Lung Disease Task Force held April 9-11, 1980 in
Clearwater Beach, FL. The paper describes the surveillance
system being set up by the Celanese Corporation.
40. Hughes, J. (Kaiser Aluminum and Chemical Corporation.)
Occupational Health Surveillance Charts; Summary of All Airborne
Contaminants and Physical Stresses in Corporate Operations;
Medical and Industrial Hygiene Considerations. Charts given to
the IOM staff at the occupational health surveillance workshop,
held as part of this TOM planning study in Washington, D.C. on
April 8, 1980.
Hillman, G. (International Business Machines Corporation.)
ECHOES: IBM Environmental, Chemical and Occupational Evaluation
System. Paper distributed at the occupational health
surveillance workshop held as part of the IOM planning study in
Washington, D.C. on April 8, 1980.
Pell, S. (E.I. du Pant de Nemours and Co.) Discussion paper for
the workshop on occupational health surveillance. Paper
distributed at the occupational health surveillance workshop held
as part of the IOM planning study in Washington, D.C. on April 8,
1980.
43. Pell, S., O'Berg, M.T., and Karrh, B.W. Cancer epidemiologic
surveillance in the Du Pant Company. Journal of Occupational
Medicine 20:725-740, 1978.
44. Wolford, R.D. and Larson, M.B. (International Brotherhood of
Painters and Allied Trades.) Statement related to occupational
health surveillance, prepared for the occupational health
surveillance workshop held as part of the IOM planning study in
Washington, D.C. on April 8, 1980.
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45. U.S. Environmental Protection Agency. Office of Toxic
Substances. TSCA Confidential Business Information Security
Manual. Washington, D.C.: U.S. Environmental Protection Agency,
July 1978.
46. Task Force on Environmental Cancer and Heart and Lung Disease.
Environmental Cancer and Heart and Lung Disease. Third Annual
Report to Congress. Gaithersburg, MD: GEOMET, Inc., August 1
1980.
47. Task Force on Environmental Cancer and Heart and Lung Disease.
Report of the Inventory of Federal Research Programs of Relevance
to the Task Force. Gaithersburg, MD: GEOMET, Inc., April 1980
48. United States Regulatory Council. Calendar of federal
regulations. 45 Federal Register pp. 77701-78116, November 24
1980.
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—1 ~ 2—
Representative terms from entire chapter:
health statistics
