Evaluating the Department of Health and Human Services Dissemination and Communication Efforts
The committee’s charge included evaluating the Department of Health and Human Services’ (HHS’s) efforts to disseminate the research findings emerging from projects it undertook under its Memorandum of Understanding (MOU) with the Department of Energy (DOE) to affected workers and communities. For the purposes of this report and consistent with its statement of task, the committee drew a distinction between dissemination and communication in the programs of HHS and DOE in pursuit of each objective. This distinction is grounded both in formal definition and in practice. Dissemination is a one-way process—to send information out widely, to publicize or broadcast information. This term was used specifically in the charge to the committee. However, the committee judged that to truly evaluate public understanding of health effects, as described in the MOU, it also had to look closely at the communication efforts of HHS agencies. Communication implies a two-way process—an interchange of knowledge, thoughts, and opinions or—as one dictionary puts it—communication is a back-and-forth process (Webster’s Third New International Dictionary 2003).
In keeping with its charge, the committee’s findings and recommendations are directed primarily at HHS activities. As noted earlier, the committee functioned under the public policy decision, reflected in the MOU, that to facilitate public understanding and acceptance of scientific findings related to health effects of hazardous exposures, responsibilities for operations and monitoring should be separated between two federal agencies, with DOE administering the nation’s nuclear activities and HHS monitoring, measuring, disseminating, and communicating information about worker and community health and safety is-
sues. In describing the events shaping the MOU, this report necessarily addresses previous concerns expressed about DOE’s management of these facilities and its actions in communicating the safety and health effects of radiation releases. This report however is not an assessment of DOE’s activities. The committee’s approach to this evaluation was shaped by a number of considerations, particularly the multiple and diverse ways in which individuals and communities process scientific information related to complex, often adversarial, scientific and technological issues.
COMMUNICATING ABOUT RADIATION RISKS
Communicating effectively about risks such as radiation health effects at DOE facilities to workers and concerned citizens is difficult for a number of reasons. First is the level of public fear about radiation from these sites. Although there is no uniform and consistent perception of radiation risk, research on the general public’s attitudes in the United States, Sweden, and Canada has shown that “public perception and acceptance is determined by the context in which radiation is used” (Slovic 2000). This means that although most people do not fear medical or dental X-rays because of the positive health value of these technologies, they do fear the radiation associated with nuclear weapons, nuclear power, and nuclear waste. Research using risk perception analysis in which different factors reflect how lay persons evaluate health and environmental risks on a number of characteristics has found that nuclear power and nuclear waste were rated as extreme in two dimensions: “dreaded” and “unknown” risks (Slovic 1987). Dreaded risks are catastrophic, deadly, and uncontrollable. Unknown risks are poorly understood, are unknown to those exposed, and have delayed effects. “Validation of these psychometric studies occurred when survey respondents were asked for word associations to a high-level radioactive waste repository. The resulting images were overwhelmingly negative, dominated by thoughts of death, destruction, pain, suffering and environmental damage” (Slovic et al. 1991).
Another finding from this research is that in every context of use, with the exception of nuclear weapons, public perceptions of radiation risk differ from the assessments of the majority of technical experts. In most instances, members of the public see far greater risks associated with a radiation technology than do experts (Slovic 2000). This disconnect between what the public and experts see as risks may lead experts to make little effort to understand what drives public fears and to dismiss these fears as trivial or “irrational.” A consequence of this disconnect is that communication efforts are frequently one-sided or unidirectional, reflecting the perspective of experts who want to communicate specific messages to the public rather than the view of what the public wants to know.
The second reason why communicating about radiation risks at DOE facilities is difficult is the complex documented history of secrecy at these sites (PSR
1992; Ackland 2002; Schneider 1988; NRC 1990). There is a history of hidden intentional and unintentional radiation releases potentially exposing both workers and citizens, producing serious public concerns about the motives and performance of DOE and its contractors and resulting in a loss of public trust and confidence in federal agency operations of these facilities. This loss of trust and confidence undermines acceptance since public confidence in information and in how well managers understand and control hazards and how trustworthy they are in fulfilling their protective duties is needed (Flynn et al. 2001). Again, the events leading to having three HHS agencies replace DOE as the performer of research on health effects and becoming the lead agencies in conducting research and communicating research findings and operations at DOE facilities were attempts to restore public confidence and trust in the operations of the federal government.
However, restoring or even establishing public trust is not easy. Trust in risk management assessments is difficult to achieve and maintain. It is usually created slowly but can be destroyed very quickly even by a single mistake. Once trust is lost, it may take a long time—if ever—to rebuild to its former state. “The fact that trust is easier to destroy than to create reflects certain fundamental mechanisms of human psychology that Slovic called the ‘asymmetry principle’” (Slovic 1993). According to this principle, when it comes to winning trust, the playing field is tilted toward distrust for several reasons. “First, negative (trust-destroying) events are more visible or noticeable than positive (trust-building) events. Negative events often take the form of specific, well-defined incidents such as accidents, lies, discoveries or errors or other mismanagement. Positive events, while sometimes visible, more often are fuzzy or indistinct. Second, negative events have much greater weight on people’s opinions than do positive events. Finally, sources of bad news tend to be seen as more credible than sources of good news by both people and the mass media” (Slovic 1993, cited in Kunreuther and Slovic 2001, p. 342).
A third reason why communicating about radiation risks at DOE sites is difficult is the complexity of the technical language and concepts. Radiation terms are foreign to most lay people and even seem contradictory at times (Friedman 1981; Friedman et al. 1987). In addition, when discussing possible radiation health effects, adding to the mix of rems, rads, and alpha or beta particles in radiation terminology is the language of epidemiology with its discussions of cohorts, case-control studies, and statistical power. Even well-intended glossaries often cannot help effectively translate this complex information or help lay people comprehend the concepts involved. More often than not, more can be accomplished in conveying such highly complex information in face-to-face situations where members of the public have the opportunity to ask questions about things they do not understand. This, however, can be a time-consuming and costly task and requires a special set of communication skills as well as specialized technical knowledge (NRC 1989).
Special Risk Communication Challenges for Federal Agencies
There are challenges beyond radiation risk and language that also have to be considered when trying to evaluate HHS dissemination and communication programs for DOE facilities. A fundamental conundrum for federal science agencies dealing with environmental risk controversies is that scientific and technical information alone seldom serves to resolve issues. The best-intentioned and most effectively considered and implemented communications programs encounter at least two major hurdles. First, environmental controversies are typically amalgams of scientific, political, economic, sociological, and ethical considerations. Second, provision of the “best” possible scientific and medical information may serve to lessen disagreement or forge consensus about “technical” aspects of the issue, but even if these goals are achieved, other dimensions of the issue may remain (Johnson 1999, as cited in Tuler et al. 2005).
More immediately germane to the challenges confronted by HHS agencies and DOE in organizing communication programs is that members of a community can have varying preferences about how they want such programs to be conducted and different criteria for determining the effectiveness or success of such programs. For example, a study of the attitudes and preferences of stakeholders living in the environs of Lawrence Livermore National Laboratory in Livermore, California, discerned five different and, in some cases, competing perspectives (Tuler et al. 2005):
Evidence-driven process with good communication to the lay public. “This perspective describes a process that is about making recommendations based on a good understanding of the evidence about the nature of the problem and to effectively communicate with the community. In this perspective, the definition of the right problem should be locally determined.”
Efficiency and focus in a science-driven process. This perspective emphasizes “addressing the key problem in an efficient and well-run process…. The quality of information is important to those holding this perspective. The best available science should be used for analysis. Data must be evaluated to assess their quality for making public health determinations. Thus, it is important to identify weaknesses and gaps. At the same time, there was no support for exploring uncertainties in the data; doing so can lead the process astray.”
Meeting the needs of the community through accessibility and information sharing. This perspective places the concerns and needs of local people at the center while the needs and wishes of the responsible agencies are peripheral. It emphasizes generating and sharing information with the community. It places the highest value on tapping the knowledge of the community, ensuring that participants have equal access to information and that uncertainties are acknowledged and explored.
Ensuring accountability with broad involvement. “Those holding this per-
spective are interested in addressing and solving problems in a manner that ensures agency accountability and allows full involvement of the community. There is an underlying distrust of the motivations of the responsible agencies (e.g., DOE, ATSDR [Agency for Toxic Substances and Disease Registry]) to redress public health risks that have arisen as a result of contamination released from the Laboratory” (italics added for emphasis).
Searching for the truth by thoroughly examining the evidence. This perspective emphasizes broad and informed discussion of the issue. “Information must be validated and it must be fully available for public discussion and consideration…. Those holding this perspective are interested in the truth of the matter.”
In effect, these perspectives point to stakeholder proclivities to employ different subjective frames of reference in responding to closed-ended scales of client satisfaction, thus reducing the value of conventional measures of program effectiveness. As noted by Tuler et al. (2005): “The core of our argument is that while generalized guidance about best practices can be useful, it can also be inadequate (and perhaps misleading) for a particular situation. Decisions about, for example, what risks to consider, how to compare and frame risks, and what are credible channels and sources of communication must be made in a process that meets social expectations about what is an appropriate process for the situation. The effectiveness of the risk communication effort may rest, in part, on meeting social preferences for how the process of planning and decision-making is designed.”
General Risk Communication Guidelines
As described above, each site and different stakeholders involved at that site have their own ideas, preferences, needs, and problems regarding the risks present or anticipated. Developing an environmental or health risk communication program to meet all of these needs is a complex process that requires considerable levels of commitment, time, money, and personnel on the part of government agencies. However, federal agencies do not enter this difficult territory without some general guidelines derived from a more than 30-year history of research and practice in the field of risk communication.
According to leading risk communication researchers, good risk communication is “communication intended to supply laypeople with the information they need to make informed independent judgments about risks to health, safety and the environment” (Morgan et al. 2002). As described in a National Research Council (NRC 1989) report that addressed the challenges of risk communication: “Risk messages should closely reflect the perspectives, technical capacity, and concerns of the target audience. A message should: (1) emphasize information relevant to any practical actions that individuals can take; (2) be couched in clear
and plain language; (3) respect the audience and its concerns; and (4) seek to inform the recipient, unless conditions clearly warrant the use of influencing techniques.”
Effective communication should focus on the issues that recipients most need to understand. Which issues need to be understood should be determined by both the communicator and the recipient. Risk researchers caution that if a communication omits critical information, it leaves the recipients worse off because it could make them believe that the information they have is complete. If it presents irrelevant information, it wastes recipients’ time and diverts their attention from more important tasks (Morgan et al. 2002).
Effective risk communication also requires authoritative and trustworthy sources. If communicators are perceived as having a vested interest, then recipients could doubt the truth of the information communicated. This lack of trust makes the communication process far more complex, spreading confusion and suspicion and thereby eroding relationships.
Finally, for a risk communication effort to succeed, the developers of the communication program must ensure that their messages are being understood as intended. Failing to evaluate whether risk messages have been understood or whether a risk program has been effective is a major problem because everyone involved in the process could be miscommunicating or talking past each other and yet no one knows it. When a message is not understood, the recipients, rather than the message, may be blamed for the communication failure. However, if “technical experts view the public as obtuse, ignorant, or hysterical, the public will pick up on the disrespect, further complicating the communication process” (Morgan et al. 2002). Lack of evaluation wastes both communicators’ and recipients’ valuable time as well as the resources spent in developing and providing the risk communication efforts.
No matter how good a risk communication program looks to its designers, it will be discounted if it is only a one-way dissemination system in which information is given to workers and citizens with no room for their opinions. Using, at the minimum, a two-way risk decision-making process that includes both citizens’ and workers’ concerns has been increasingly recommended and implemented. For example, in its final report, the Presidential/Congressional Commission on Risk Assessment and Risk Management (1997) concluded that a good risk management decision emerges from a process that elicits the views of those affected by the decision, so that differing technical assessments, public values, knowledge, and perceptions are considered. The Presidential/Congressional Commission on Risk Assessment and Risk Management (1997) referred to those affected by a risk or a risk management decision as stakeholders, stating:
“Stakeholders bring to the table important information, knowledge, expertise, and insights for crafting workable solutions. Stakeholders are more likely to accept and implement a risk management decision they have participated in shaping. Stakeholder collaboration is particularly important for risk management
because there are many conflicting interpretations about the nature and significance of risks. Collaboration provides opportunities to bridge gaps in understanding, language, values, and perceptions. It facilitates an exchange of information and ideas that is essential for enabling all parties to make informed decisions about reducing risks” (Presidential/Congressional Commission on Risk Assessment and Risk Management 1997).
An important guideline from an NRC (1989) report also bears directly on the committee’s review of HHS’s communications activities: “Risk communication is successful only to the extent that it raises the level of understanding of relevant issues or actions and satisfies those involved that they are adequately informed within the limits of available knowledge.” All of the guidelines mentioned for effective risk communication in this introduction, taking into consideration the considerable challenges involved, were used to evaluate HHS dissemination and communication efforts to workers and citizens.
COMMITTEE’S APPROACH TO EVALUATING THE HHS EFFORTS
To evaluate HHS’s dissemination and communication efforts under the MOU, the committee reviewed information provided by HHS agencies to the affected communities in terms of relevance, accuracy, accessibility, timeliness, comprehensibility, and credibility. For its evaluation, the committee reviewed a sample of written, electronic, and oral communications of the HHS health study findings and other outreach efforts at three sites: Hanford, Oak Ridge, and Los Alamos. These site-specific reviews are described in detail in Annexes 5A, 5B, and 5C, respectively.
Beyond looking at specific efforts, the committee also contacted selected members of the Hanford Advisory Board and others in that region to get their input about the impact of the dissemination and communications efforts on this community. It also solicited information from social scientists who had studied some of the government-public interactions at DOE sites and sought the views of former members of several site-specific committees as well as other knowledgeable individuals. In addition, the committee ran searches in the Lexis-Nexis academic database to identify key public and worker issues that appeared in newspapers at each of the three sites and whether these had been addressed by HHS risk communication efforts. It also searched the Lexis database specifically to see whether information disseminated by the National Institute for Occupational Safety and Health (NIOSH) to workers and the public about various studies had reached a wider audience through newspaper coverage. Finally, to ensure that it had as complete a picture as possible, the committee reviewed NIOSH media coverage in a large collection of articles in the evidence package presented by the agency.
AGENCY COMMUNICATION EFFORTS
The three HHS agencies involved in this study had a number of dissemination and communication responsibilities. NIOSH, through its Office of Occupational Energy Research Program (OERP) and its Health-Related Energy Research Branch (HERB), was responsible for communicating its study findings to workers, the public, Native American tribes, the scientific community, and other stakeholders. The National Center for Environmental Health (NCEH) provided information about its studies to workers and the public primarily through its contractors. Several NCEH contractors, including the Technical Steering Committee for the Hanford Environmental Dose Reconstruction (HEDR) and the Fred Hutchinson Cancer Center for the Hanford Thyroid Disease Study (HTDS), undertook considerable public communication efforts. Of the three HHS agencies, the ATSDR is the most heavily involved in conducting communication, outreach, and education efforts for the general public in the communities surrounding DOE facilities. As part of its broad congressional mandate to evaluate public health concerns related to exposures at hazardous waste sites, ATSDR developed and provided information, education, and training concerning hazardous substances to affected communities across the country, including but not limited to DOE facilities.
National Institute for Occupational Safety and Health
NIOSH is responsible for conducting epidemiological studies of workers at DOE facilities and for communicating the findings to workers and their representatives and to the community at large. The OERP has a number of communication goals related to effectively informing workers, scientists, and the public about its work. These goals include the following (NIOSH 2005):
“Develop better mechanisms for generating research hypotheses by expanding the involvement of partners and actively seeking their input.”
“Conduct research in an open environment with attention to clear and accurate education of workers and the public.”
“Provide information that enhances the understanding of risks associated with radiation-induced health effects.”
“Solicit and consider worker interests and the public’s concerns.”
“Provide relevant occupational exposure and health outcome information for public health research and policy.”
NIOSH communication activities include establishing communication plans and channels for the various sites, providing simultaneous communication to management and labor representatives, distributing one-page Brief Reports of Findings, making final technical reports available, and interacting directly with
workers. NIOSH conducted a needs assessment of what workers wanted to see in summaries of research findings, including simplified definitions of technical terms, other language-level issues, and increased availability of information (Ahrenholz 2001).
According to NIOSH, the main mechanisms for OERP and HERB communication efforts include the following (NIOSH 2005):
Regular research meetings. These meetings allow researchers (primarily those funded extramurally) to have an opportunity to communicate about their research.
Periodic conference calls and on-site meetings with affected workers to discuss study status and results. Slide shows and other presentations are given at these meetings for workers, providing an update on findings of studies that had been completed, the studies that are currently under way, and occasionally reminding viewers about the MOU, its various governmental links, and the responsibilities of NIOSH under the MOU (NIOSH 2006b). NIOSH made presentations to both the Hanford and the Oak Ridge Health Effects Subcommittees, including slide shows and other briefing materials (NIOSH 2006b).
Brief Reports of Findings issued to workers through the mail, electronically, and on-site. These one- or two-page summaries are discussed in more detail below.
Public meetings. Occasionally, NIOSH has convened a public meeting such as the one about its epidemiological research program conducted under the MOU in Washington, DC, on October 27, 2005 (NIOSH 2006a). It also has a plan to provide study results to individual workers but has not used it. The 1988 NIOSH Worker Notification Procedures Manual details how these results are to be reported; however, NIOSH has stated that “to date, researchers have not had a study finding that necessitated formal individual worker notification” (NIOSH 2005).
NIOSH Brief Reports of Findings
NIOSH places significant emphasis on the use of short reports of study findings to communicate about research and activities to workers and the general public. These reports have various titles, including “Brief Reports of Findings,” “Announcement of Findings,” or “Summary of Findings.” The Brief Reports typically have included information on the type of study conducted, its purpose, a description of the study population, the study methodology, the main study findings and conclusions, limitations of the study, a glossary of terms, and information about how to obtain a copy of the full study and to reach a contact person for addressing questions (NIOSH 2005). According to NIOSH (NIOSH 2005), these reports were prepared after extensive consultation with workers and management at DOE facilities. The report summaries were converted to a conven-
tional file format (portable document file or pdf) so that they could easily be placed in site newsletters, on bulletin boards, and on web sites. They were also distributed directly to individual workers or to worker representatives as an e-mail attachment. While NIOSH did not require extramural researchers to engage in communications activities, information about a number of their studies was disseminated through these reports.
NIOSH frequently provided the same information to various DOE facilities with these reports, using different “editions,” such as the Hanford or Oak Ridge edition. This was particularly true if the study was one that involved multiple sites. It also occasionally issued NIOSH-HERB updates, which related information about two or three main studies that were being conducted at a particular site and also included very brief descriptions of other studies going on at the site. Several updates were evaluated for Hanford, Oak Ridge, and Los Alamos: these usually contained the same basic information for all sites but were tailored to highlight information from the viewpoint of a particular site.
When a study was completed under the OERP, study findings were reported to workers, DOE Headquarters, site managers, and site contractor management. Initially, study results were communicated to workers and worker representatives simultaneously. However, because of concerns expressed by DOE, the procedure was changed and findings were communicated to DOE Headquarters three days before the communication to workers and site management. All of this resulted in a complex communication and clearance procedure, which is diagrammed in Figures 5-1 and 5-2 (see NIOSH 2005).
Agency Communication Evaluation
NIOSH states that these reports have been used to “successfully communicate the findings of approximately thirty internal and external studies to some 300,000 current and former DOE workers” (NIOSH 2005). The basis for this assessment that findings have been “successfully” communicated, however, is not documented in NIOSH reports. It appears to relate to estimates of the number of individuals “reached” by NIOSH activities, rather than to any systematic study or assessment from target audiences about the relevance, quality, and timeliness of the information. NIOSH reports also a lack of evidence about whether or how the information was used or the degree to which this information produced increased agreement within the affected community about any specific scientific or technical aspect of the subject matter under study.
According to NIOSH, there were no external evaluations of its outreach program. Instead, there were internal evaluations by its communications team, which consisted of the assistant branch chief, a health communication specialist, and one or more service fellows. Scientific and technical staff and others at NIOSH with health communications expertise assisted as needed. NIOSH states that “the success of the OERP communication strategies was evaluated periodi-
cally by obtaining feedback (primarily verbal) from workers and management on the effectiveness of the communications channels and instruments (e.g., the ‘Brief Reports of Findings’) and adjustments were continuously made to accommodate this feedback, to make the process and information more useful to the target audience.” All formal communications to worker representatives, including the Brief Reports, were reviewed and edited by the NIOSH public information office, whose personnel also provided feedback to OERP on ways to better involve workers and the public in its activities (NIOSH 2006c).
Committee Evaluation of NIOSH Efforts
Despite these evaluation procedures and NIOSH’s early concern with target audience needs for simple language in these Brief Reports of Findings, the committee judged that much of the language in these reports was quite technical and would not be easily understandable to readers with a high school education, even though the readers might have had some technical training. The glossaries, which were provided to help comprehension, also were technical and difficult to understand. A Ph.D. social scientist with no radiation background, who also is a technical editor, read one Announcement of Findings on “Epidemiological Evaluation of Cancer and Occupational Exposures at the Rocky Flats Environmental Technology Site” (April 2003)1 and verbally told an NRC committee member that he thought the main parts of the report and the glossaries were not well written and would not be understood easily by lay readers. He did not consider the glossaries any help to people who were not familiar with the study or radiation terms.
Based on its own review, the committee concurs with these comments, which apply to almost all of the Brief Reports of Findings. It questions whether many workers, their families, or their representatives such as union officials would be able to understand the information conveyed. Unfortunately, this assessment also extends to many of the slide show presentations viewed in the NIOSH evidence package (although one would expect that the presenters would have made special efforts to describe and explain the material being presented orally) (see NIOSH 2005). These materials appear to be written at a level that was too difficult for easy comprehension by a lay audience. One example of the use of such complex language can be found in a 2002 NIOSH Announcement of Findings— “Lung Fibrosis in Plutonium Workers.” The brief report states the following: “There was a significantly higher proportion of abnormal chest radiographs among plutonium workers (17.5%) as compared to non-plutonium workers (7.2%), p = <0.01. The plutonium workers were significantly older at time of x-ray than were unexposed workers, possibly accounting for the differences. Of those plutonium
See http://www.cdc.gov/niosh/oerp/pdfs/2001-133g26-1.pdf. Last accessed November 2006.
workers with absorbed lung doses of 10 Sv or greater, 37.5% had an abnormal chest x-ray, compared to other plutonium workers (16.5%). When we controlled for effects of age, smoking, and asbestos exposure we found that plutonium lung dose of 10 Sv or greater conferred a 5.3-fold risk of having an abnormal chest x-ray when compared to employees with no plutonium exposure (95%C.I. = 1.2 to 23.4).” It is not clear to the committee why these language problems did not surface during OERP personnel contacts and meetings with workers and through other internal evaluation procedures.
As documented in more detail later in the Hanford case study, individuals attentive to worker health issues reported that NIOSH did in fact go beyond the dissemination of documents. While those who commented on this issue uniformly reported that NIOSH did not appear to have consulted with workers or their representatives in the selection of research topics on study design, once NIOSH launched a study, in addition to disseminating information in print, it routinely met with labor groups and kept them well informed as to the progress of the study, as well as the final results. Of the 13 individuals who were contacted as a part of the Hanford case study, only a few indicated that they were generally familiar enough with the activities of all three HHS agencies to offer any observations on their comparative effectiveness. However, these few judged NIOSH to be the most effective in its dissemination activities.
The lack of any external evaluation of NIOSH dissemination and communication efforts handicaps an evaluation process by the committee. Written materials and records provided by NIOSH relating the success of meetings and other communication methods such as slide shows employed by NIOSH to communicate with workers and members of the public about its studies are all based on agency activities and perspectives; they do not provide information or data on how stakeholders responded to these activities, and thus do not provide an adequate basis for a third-party assessment.
Other Communication Efforts to Workers
Newspapers The NIOSH Brief Reports were the likely basis for some newspaper articles that appeared about NIOSH studies. In a two-stage communication process, these articles served to disseminate NIOSH reports to workers and members of the public in a more understandable form. Newspaper articles using lay language were written about at least six of these studies. The largest number of newspaper articles found during the committee’s search of Lexis-Nexis covered the Rocky Flats study discussed previously, with slightly different interpretations of the study findings.2 The Associated Press wire service ran a story emphasizing
that the 10-year study “found workers who dealt with plutonium were about two times more likely to develop lung cancer than those who were not employed at the plant” (Long 2003). The Denver Post emphasized that most Rocky Flats workers are typically healthier than the general public, but some types of cancer are higher for workers (Nicholson 2003). It pointed out that the study did find “a significant risk of lung cancer for weapons workers who inhaled radioactive particles.” The Rocky Mountain News emphasized that “people who inhale plutonium have a higher risk of lung cancer than previously believed, according to a study of Rocky Flats workers” (Morson 2003).
The details in these news articles encompassed more than those presented in the Rocky Flats Brief Report of Findings, suggesting that reporters obtained additional information. One such source was the study director, who is quoted in the articles, along with state and NIOSH officials and one worker. One article indicated that the report was released at a public meeting (Nicholson 2003). Neither the technical language nor anything from the glossary in the Brief Report of Findings appeared in the newspaper articles, as one would expect.
Other newspaper or wire articles that appeared about NIOSH studies included the following:
Epidemiological Evaluation of Childhood Leukemia and Paternal Exposure to Ionizing Radiation, September 1998.3 This was a very brief article by Associated Press that represented information in the NIOSH report (Associated Press 1998).
Multiple Myeloma Case-Control Study at the Oak Ridge Gaseous Diffusion Plant (K-25), March 2000.4 Noted in a NIOSH-HERB Oak Ridge Update, this study was described by Associated Press as relating specifically to Los Alamos although it did mention that other sites also were involved (Associated Press 2000). An article in the Seattle Post-Intelligencer discussed the implications of the research for Hanford (Paulson 2000). Both articles emphasized the increased deaths from multiple myeloma, but the Associated Press article discussed the increased sensitivity to radiation of older workers in more detail and earlier in the story than did the Seattle article.
Mortality Among Female Nuclear Weapons Workers, June 2000;5 Associated Press wire service. This article noted that the study director would discuss his findings from Washington, DC, in a live satellite presentation and that this presentation would be videotaped and made available at sites involved in the
study. This article accurately summarized the main points of the NIOSH Brief Report of Findings (Hebert 2000).
Epidemiological Study of Mortality and Radiation-Related Risk of Cancer Among Workers at the Idaho National Engineering and Environmental Laboratory, a DOE Facility, October 2004.6 An article in the Idaho Falls Post Register reflected the main findings of the study but also included other information, including comments from one worker (O’Neil 2004).
Cancer Risk Following Low Doses of Ionizing Radiation—A 15-Country study7 (no date). No U.S. articles were found, but one article about the study appeared in the Irish Times and one in the Guardian, both UK publications, on June 29, 2005. The Guardian article represented well the information about the study (Boseley 2005), while the Irish Times article went into areas not covered in the NIOSH Brief Report and summarized only its main points (Ahlstrom 2005).
While these newspaper articles did not cover all of the NIOSH studies done at the sites, the newspapers selected a few important ones to present to their target audiences in an understandable and generally accurate manner. These efforts extended the reach of NIOSH information from some of the Brief Reports of Findings.
DOE Communications In the 1990s, DOE provided information to workers about studies, including some by NIOSH, in several different ways. DOE reported on the following studies in Health Bulletins:
Mortality Among Workers Exposed to External Ionizing Radiation at a Nuclear Facility in Ohio. This study was done by Los Alamos scientists and published in a journal in May 1991. This study focused on the Mound Facility near Dayton. There also was a brief discussion of another Mound study for polonium-210 exposure.
Epidemiological Study at Oak Ridge. This study followed up a previous mortality study in 1985. This referenced a study by Dr. Steven Wing and presented results in 1991 of an apparent association between very-long-term, low-
level radiation exposure and an increased risk of death from all types of cancer combined.
Worker Mortality Study at Los Alamos National Laboratory. This study was published in a journal in 1994.
Uranium Dust Exposure and Lung Cancer Risk in Four Uranium Processing Operations. This study explored the risk of lung cancer in workers who had inhaled uranium dust at three sites. The study was published in a journal in 1995.
Y-12 Worker Mortality Study. This was conducted by the University of North Carolina in 1996.
Mallinkrodt Chemical Works Mortality Study. This was also the subject of a newspaper article in the Cincinnati Enquirer. Results were presented to workers at Mallinckrodt in 1998.
Multiple Myeloma Study at Four Sites. Results of this study by Steven Wing were presented in 1998 to workers at the four study facilities and published in April 2000 in a journal.
NIOSH Study of Parents’ Exposure to Ionizing Radiation and Cancer Among Their Children. This study was presented to workers in 1998 at each of the three DOE facilities involved.
Mortality Study of Rocketdyne-Atomics International Workers for Exposure to Both Radiation and Asbestos. These studies were presented to workers and community members soon after completion of each study and portions were published in journals in 1999.
DOE also published two issues of Health Watch in 1993, which discussed various rules and standards for workers, and two issues of Epidemiology News, which summarized various worker studies. It also published a paper called “Description of CDC [Centers for Disease Control and Prevention] Studies,” which summarized various NIOSH studies of the health of workers at individual DOE facilities and mentioned other NIOSH studies, including community studies near DOE facilities by NCEH and a study at multiple sites of maternal and paternal pre-conception exposure to ionizing radiation and childhood leukemia. Except for similar headings, no standardized format was used in these DOE documents as was later done with the NIOSH Brief Reports of Findings. There were no glossaries either. A number of the documents noted that results were reported directly to workers with a date, included information about publication of the research findings in journals, and had a standard line that information from the study was “provided to committees that review and make recommendations regarding radiation health protection standards in the United States.” There was always a contact person’s name and phone number on these bulletins. The committee judged that some of the writing in these DOE Health Bulletins was clearer and less technical than that in the NIOSH Brief Reports, although these still might have been difficult for lay persons to understand.
National Center for Environmental Health
NCEH studies the “health effects of environmental radiation exposures from nuclear weapons production facilities in the United States” (NCEH 2006a). It is responsible for conducting research on ionizing radiation in the environment.8 NCEH conducts dose reconstruction and other health studies at DOE facilities. Regarding communication and outreach efforts, NCEH chose to communicate much of its work through the Health Effects Subcommittee (discussed below). “NCEH’s goal was to keep the public informed through meeting notifications (by contractor mail-outs) to interested individuals and organization and by posting meeting announcements in the Federal Register” (NCEH 2006c).
NCEH noted that there were dedicated subgroups of the Health Effects Subcommittees (HESs) at Fernald, Hanford, Idaho National Laboratory, and the Savannah River site that worked to evaluate the agency’s communication and outreach activities. Also, NCEH used the HES and local community meetings to “help develop effective communication of project research and findings” (NCEH 2006c).
NCEH provided a list of documents that were in storage in boxes but in principle available to the committee upon request (NCEH/ATSDR 2006). Due to time constraints, the committee was not able to review many documents that were included in this list. Instead, the committee chose to review the communications efforts related to larger-scale NCEH projects, including HEDR at the Hanford site and the Los Alamos Historical Document Retrieval and Assessment (LAHDRA) at Los Alamos.
Hanford Environmental Dose Reconstruction Project
Two major projects were conducted by NCEH at the Hanford site. The first was the HEDR Project. The HEDR was initiated to estimate the amount and type of radiation releases to which individuals living at or near the Hanford site may have been exposed during the production of nuclear materials. The purpose of the study was to “address community health concerns by estimating the amount and types of radioactive materials that were released to the environment (via air and river pathways) from the Hanford Site and by estimating radiation doses to representative individuals within the communities downwind from Hanford” (NCEH 2005) (see Chapter 4).
Although this project was inherited by NCEH from DOE, it was still funded in part by NCEH under the MOU for several years and is considered within the purview of the committee’s study. Originally, DOE directed Battelle Pacific Northwest Laboratories, one of its contractors, to conduct the HEDR. However, this action did not satisfy a distrustful public, and DOE agreed with Washington
and Oregon that an independent group needed to direct the study and provide a forum for participation and direction by the states, Native American tribes, and the public. In 1988, a Technical Steering Panel (TSP) was selected to direct the work. Its members were chosen by the deans of research at major universities in the two states. The states and involved Indian tribes also had representatives on the TSP (Niles 1996).
Besides handling the scientific aspects of the HEDR Project, the TSP developed important public communication plans. Interestingly, the desire to provide resources for public information caused an early “internal battle”: some members of the TSP were not convinced of the importance of public communication, and some wanted to reserve funds only for scientific research. However, the need for public information eventually was recognized and a subcommittee of the TSP was established to address it. Initial communication efforts focused on dissemination, specifically “establishing and building mailing lists, providing meeting summaries to the public, preparing and sending out meeting notices, drafting a public information plan, and preparing fact sheets that explained the Project work” (Niles 1996). Staff support for the TSP’s communication program came from the Washington State Department of Ecology and the Oregon State Department of Energy (Niles 1996). Meeting monthly, the TSP Communications Subcommittee used information gathered in surveys, focus groups, and comment forms to develop annual communication plans and budgets. The TSP used the following tools to support its public information program (Niles 1996):
A quarterly newsletter;
Fact sheets written by TSP members on a variety of topics—the TSP produced 18 fact sheets and distributed about 100,000 copies of them;
Two informational videos explaining how and when radiation releases occurred at Hanford, among other things—more than 300 copies of each were distributed to libraries, hospitals, schools, and community groups throughout the Northwest;
A poster for use in libraries and meeting places to introduce people to HEDR;
Public meetings in conjunction with each TSP meeting;
A question-and-answer brochure;
A speakers’ bureau whose members spoke to civic groups, the medical community, scientific groups, schools, and others;
Quarterly and annual reports to keep interested parties updated on TSP work: the Communications Subcommittee provided quarterly reports to ensure that the TSP and the public were aware of ongoing public information activities; according to the TSP, public reaction to this approach was good;
Newspaper advertising for TSP and community meetings to encourage public attendance;
Reports of major HEDR accomplishments, including short summaries written for the media and the public;
Direct mail to keep people informed of ongoing meetings and other activities, sent to more than 6,000 citizens and the region’s media;
News releases sent to more than 100 media organizations;
A toll-free phone line for free and easy access to project information— about 9,000 calls were received from people requesting information or asking questions; and
Document repositories at 13 public libraries throughout the region.
Agency Communication Evaluation
According to the “History of the TSP,” evaluation of its communication materials and program as a whole was a major part of this project (Niles 1996). First, its initial communication plan was developed with input from focus groups on target audience needs for information. Many of its “communication products were reviewed by Downwinder groups and other interested members of the public while still in draft form. This allowed those with a personal interest in the Project to help ensure the written materials were clear and unbiased” (Niles 1996). TSP members believed that these review efforts resulted in better communication products. In 1991, the TSP sponsored a telephone survey by Washington State University to determine citizen attitudes, opinions, and level of knowledge about the project. Overall findings showed that people were interested in the project, that the public information efforts were well targeted, and that the TSP needed to continue to communicate with the public in a variety of ways, including producing fact sheets and newsletters, although the news media proved to be the most effective sources of public information about the project (Niles 1996).
Major efforts also were made to provide clear information for the public when major project announcements were being made. Months of careful planning went into preparing for each announcement at well-attended public meetings in a number of cities in Oregon and Washington, according to the TSP.
The Hanford Thyroid Disease Study Project
The second major NCEH project at Hanford was the HTDS. A similar public information effort was carried out for the HTDS by the Fred Hutchison Cancer Research Center, a CDC contractor in Seattle (see Chapter 4). However, that study is not a topic of this report since it was specifically ordered by Congress. It should be noted that this contractor developed an excellent public information program that ran for 9 years with input from a number of stakeholder groups; many of its elements can be considered best practices. Unfortunately, at the end of the study, some communication problems occurred to mar the record of this otherwise fine program (NRC 2000; Friedman 2001).
Committee Evaluation of NCEH and Contractor Dissemination and Communication Efforts
Details about this public information effort are included in this report not only because the HEDR Project came under NCEH purview in its later stages, but also because it serves as a good example of a concerted effort to communicate with the public. In all, in the committee’s view this serves as one of the best examples of best-practice communication techniques encountered in its review of HHS activities. As reviewed by the committee, communication products distributed to the public through this program were understandable, timely, and informative. Large mailing lists and the use of commercial media helped to ensure that the communication messages reached a large regional audience. Some two-way communication also occurred, according to the TSP History, with early input from focus groups on the initial HEDR communication plan and through consultation about and review of communication products still in draft form by Downwinder groups and other interested parties. Finally, this program used various evaluation techniques to make sure that its messages met the needs of the target audience, were understood, and reached the intended audiences. Such evaluation efforts are laudable and speak well for the HEDR communication program.
Comparing the HEDR and HTDS public communication efforts to those used by NIOSH, NCEH for other sites, and ATSDR indicates that these HHS agencies have followed different models and mechanisms for public and worker communication. Based on the information the committee has reviewed, the models used by both the HEDR and the HTDS contractors worked quite well. This observation brings up the question of what organizational arrangements and levels of commitment are needed for effective communication, which are commented on in the discussion, conclusions, and recommendations at the end of this chapter.
Agency for Toxic Substances and Disease Registry
ATSDR is congressionally mandated to evaluate public health concerns related to exposures at hazardous waste sites. A significant part of these efforts includes “information development and dissemination, and education and training concerning hazardous substances” (ATSDR 2006a).
Of the three HHS agencies, ATSDR is the most heavily involved in conducting communication, outreach, and education efforts for the communities surrounding DOE facilities. In 2000, the MOU between the HHS and DOE cited ATSDR’s responsibilities:
Preparing Public Health Assessments (PHAs) and health consultations for the communities. PHAs are “in-depth evaluations of data and information on the release of hazardous substances into the environment.” The public is encour-
aged to comment on the PHAs during a 45-day public comment period (ATSDR 2006b). ATSDR also prepared press releases and newspaper advertisements announcing that the PHAs were available for public comment (ATSDR 2006b) (see Chapter 3). The PHAs include information on estimated exposure levels (doses) that may be experienced by individuals in the vicinity of the DOE sites.
Engaging in health education and promotion activities by developing and implementing strategies to promote health and reduce potential exposures and disease. Because of its responsibilities under the Comprehensive Environmental Response, Compensation, and Liability Act (CERCLA), ATSDR has often taken the lead in communication and outreach efforts to the affected populations surrounding DOE facilities. Some methods of written communication include news releases, press advisories, letters to the editor, site-specific web pages, public service announcements, and media interviews (ATSDR 2006b).
Conducting site-specific health surveillance, health studies, and exposure and disease registries. Health surveillance efforts are used to screen the affected population for biological markers of disease, while health studies use biomarkers to study health effects related to exposure to low levels of toxicants. The National Exposure Registry, which includes data from specific subregistries, is “designed to communicate to individuals the best available information to the long-term health consequences of low-level, long-term exposures to hazardous chemicals identified at hazardous waste sites.”9
Developing toxicological profiles at the site. ATSDR is congressionally mandated to develop toxicological profiles for environmental contaminants present at Superfund sites. The profiles are designed to “succinctly characterize the toxicologic and adverse health effects information for the hazardous substance.”10 ATSDR produced seven toxicological profiles on radioisotopes under the MOU for americium, cesium, cobalt, iodine, ionizing radiation, strontium, and uranium. An evaluation of these profiles can be found in the scientific program assessment (Chapter 3).
Public Health Assessments
ATSDR prepared separate PHAs for four areas at Hanford: the 100-, 200-, 300-, and 1100-Areas. The agency also prepared five PHAs for Oak Ridge and one for Los Alamos. Each of these followed a similar format, with brief summaries, followed by sections on background of the site and the area being studied; community and Native American health concerns; environmental contamination and other hazards; pathway analysis; public health implications; conclusions; and
2000 Memorandum of Understanding between the U.S. Department of Energy and the U.S. Department of Health and Human Services.
See http://www.atsdr.cdc.gov/toxpro2.html. Last accessed August 2006.
recommendations. For the Hanford PHA on the 200-Area, a public health plan was also included at the end of the report. In final versions of the PHAs, public comments were included in tabular form with agency responses. The three Hanford documents viewed by the committee were relatively brief and understandable in the summary, conclusions, recommendations, and sections related to community health concerns and public health implications. The scientific discussion sections, as expected, were more difficult for the public to comprehend.
One of the PHAs on the 300-Area at Hanford described how ATSDR attempted to find out about community health concerns by distributing flyers to more than 1,000 Hanford residents. It received 93 replies and made 12 additional telephone calls in response to requests for oral responses. In addition to the flyers, ATSDR staff and scientists exchanged communications with representatives of the nine tribal nations in the area (ATSDR 1997b). Perhaps due to the low response rate to its flyers or other unknown factors, the discussions of community health concerns in the Hanford PHAs appear to be formulaic. For example, similar paragraphs are repeated in different reports. Some of this could be attributed to a conventional “front-end boilerplate” approach, but other aspects involving substantive sections of the reports also appeared forced into a standard pattern that curtailed more explanatory and less technical information about site-specific findings.
A later PHA for the Y-12 uranium releases at Oak Ridge Reservation, issued on July 30, 2004, showed improvement in quantity and quality over the Hanford reports (ATSDR 2004c). All sections of the PHA were more developed, particularly the public health implications and community health concerns. A new section had been added about children’s health considerations; a public health action plan was also part of the PHA. The summary section had several blocks of print that either highlighted the major finding of the PHA or explained technical information to readers. This report had 16 pages of tabular public comments and responses, although many of the responses were not very informative.
Toxicological Profiles and Tox FAQs
When a draft toxicological profile is released, the public has 90 days to comment. After the comment period has ended, ATSDR states that it “considers incorporating all comments into the documents” and finalizes the profiles, which are then available on the Internet and through the National Technical Information Service. Copies also are sent to state health and environmental agencies and other interested parties.11
The first chapter of a toxicological profile is directed at the public. Called the Public Health Statement (PHS), it provides a summary of the toxicological profile in understandable language and is prepared as a series of questions. For example, in the profile on americium, topics include (ATSDR 2004b) the following: What is americium? What happens to americium when it enters the environ-
ment? How might I be exposed to americium? How can americium enter and leave my body? How can americium affect my health? How can americium affect children? How can families reduce the risk of exposure to americium? Is there a medical test to determine whether I have been exposed to americium? What recommendations has the federal government made to protect human health? Where can I get more information? The PHS is available as a stand-alone document in both English and Spanish. The toxicological profiles also include a “Quick Reference for Health Care Providers,” which describes the chapters of the profiles and refers to information that might be relevant to a health care provider, including the sections related to pediatrics and child health issues.
In addition to the toxicological profiles, ATSDR produces ToxFAQs, brief two-page fact sheets with information about a substance, available in both English and Spanish. The sections of the ToxFAQs closely mirror those of the PHS, but the text is reduced and simplified substantially. The documents also include a box of highlights summarizing the main findings in the toxicological profile. For example, the highlights section of the americium document states: “Very low levels of americium occur in air, water, soil, and food, as well as in smoke detectors. Exposure to radioactive americium may result in increased cancer risk. Americium has been found in at least 8 of the 1,636 National Priorities List (NPL) sites identified by the Environmental Protection Agency (EPA)” (ASTDR 2004b).
Agency Communication Evaluation
To evaluate the communication quality of its documents, in addition to requesting public comment, ATSDR included surveys approved by the Office of Management and Budget with each PHA and health consultation to request public input. Of the 2,214 surveys distributed, 82 completed surveys were returned to ATSDR, resulting in a rate of return of 3.7 percent. ATSDR reported that the “affirmative response rate of community members regarding whether their health concerns were addressed in ATSDR documents increased from 65 percent in FY2003 to 78 percent in FY2004.” Of the responses received on surveys of PHAs and health consultations, the public was generally pleased: the questions were answered 81 percent positively, 13 percent negatively, and 6 percent with no opinion. One question on the survey (Were the customers’ health concerns addressed?) received 78 percent positive replies, 16 percent negative replies, and 6 percent no opinion. ATSDR used three other survey tools in FY 2004 to obtain public feedback including the following: “3,612 community health concerns surveys mailed out to communities resulted in an 11% return; distribution of 298 community meeting surveys at the meetings resulted in a return rate of 46%; and
See http://www.atsdr.cdc.gov/toxpro2.html. Last accessed August 2006.
distribution of 9,363 fact sheets surveys resulted in a 7.0% return.” (ATSDR/ NCEH 2006). The community meeting survey had the highest response rate and the response rate for the community health concerns and fact sheet surveys were two to three times higher than those for PHAs and the health consultations (ATSDR/NCEH 2006).
Committee Evaluation of ATSDR Efforts
In general, based on its examination of the communications sections of the four PHAs discussed above, the committee believes that ATSDR made an effort to make sections of these reports understandable to interested members of the public and to address their concerns in these reports. Most of the sections of the PHAs that members of the public would be interested in and would have read were written in language that would be understandable for a general audience.
In general, the ToxFAQs were condensed to a reasonable length, were relatively easy to read, and translated the health information into understandable language. Since the documents were not site-specific, they did not include information about potential exposure scenarios at the sites. The format followed that of the PHS and included a number of questions about which those living near the sites might be interested in learning more, including questions about childhood exposures and how families could reduce exposure.
Generally, ATSDR appears to have fulfilled its requirements to disseminate information to citizens living near DOE facilities. Its web site has many items and links, conveying and explaining information to interested readers about health issues at these sites. Although the percentage returns from the public on some of its evaluative efforts were low, it appears that the agency did make a concerted effort to obtain public input and feedback to improve its efforts. Some specific programs and issues related to ATSDR efforts are discussed later in the site-specific sections of the annexes to this chapter.
AGENCY COMMUNICATION EFFORTS WITH ADVISORY COMMITTEES
Advisory committees also played an important role in communicating and disseminating information about health risks to the public at or near the DOE sites. Some such committees are discussed below.
Health Effects Subcommittees
Health Effects Subcommittees were established at some DOE facilities as a major way to establish two-way communication and allow for public input and advice on decision making. These were established under the Federal Advisory Committee Act (FACA) “to provide advice to CDC and ATSDR about public
health and research activities conducted by CDC and ATSDR at DOE sites.”12 Originally, subcommittees were formed at four DOE facilities including Hanford, Fernald, Idaho National Laboratory (INL), and the Savannah River site. The Oak Ridge HES was established in 2000. The HESs were used as the primary mechanism for public involvement in NCEH activities at DOE facilities (COSMOS 2001a, 2001b).
These subcommittees were used by NCEH, NIOSH, and ATSDR to facilitate public involvement. Several HESs had subgroups that dealt with and provided advice on public communication issues (NCEH/ATSDR 2006). The general public was informed about meetings through announcements in local papers, flyers sent to area libraries, the DOE facility, direct mailings, and announcements in the Federal Register. At the meetings, the subcommittees often made consensus recommendations to the agencies. More details about recommendations and an evaluation of the Hanford and Oak Ridge HESs are discussed in the case studies of these sites in the annexes to this chapter.
To make sure that the HESs were operating effectively, HHS sponsored an independent evaluation of their activities. The evaluation was conducted by the COSMOS Corporation in 2001 and covered the years 1999-2001. The COSMOS study examined four HES programs: Fernald, Hanford, INL, and the Savannah River site. The committee cites this study extensively because it is the one example that the committee has been able to identify within the scope of its review in which a large-scale independent external evaluation has been conducted of any of HHS’s communication activities.
The evaluation criteria and questions contained in the COSMOS report addressed both process and outcome dimensions of the HES’s communication program. COSMOS gathered its information by (1) conducting interviews with representatives from the agencies (NIOSH, NCEH, ATSDR, DOE), HES chairs, and affected community members; (2) distributing surveys to HES members; and (3) reviewing minutes from HES meetings (COSMOS 2001a, 2001b). The COSMOS evaluation included “findings about the operations, effectiveness, and outcomes of the advisory process” in addition to addressing five evaluation questions (COSMOS 2001a):
How effective are the subcommittees in providing relevant and timely advice to the agencies on site-specific public health activities and research?
How effective are the agencies in providing feedback on the advice received from the subcommittees; considering this advice in decision making; and creating or changing programs, policies, and practices to reflect advice?
To what extent are the advisory systems’ efforts to promote public involvement helping to improve perceptions that the public health activities and research are credible and to improve trust between groups?
To what extent is the advisory system helping to deliver the appropriate prevention services?
Is the FACA-chartered subcommittee process the most appropriate and effective mechanism for obtaining public involvement in health research and public health activities?
Among the findings from the evaluation were the following:
Regarding the public benefits of the subcommittees, these included “providing a formal way of advising the government on public concerns; improving communication with the government; and providing access to information.” In addition, the agencies noted that the process encouraged them to learn more about community concerns (COSMOS 2001a).
While outreach by the HESs was not identified as a specific subcommittee function by the FACA charter, implementing outreach activities by the subcommittees could achieve several key objectives of the advisory process. These included broad public participation in public health activities and research, representation of diverse viewpoints on the subcommittee, communication of the findings of public health activities and research, and identification and communication to the federal government of the community’s concerns. The report noted that at the time, confusion existed among some agencies about the appropriateness of subcommittee outreach activities. Also, agencies had allocated “relatively few resources to outreach activities” (COSMOS 2001a).
NCEH and ATSDR should evaluate the value of subcommittee’s outreach activities and, if indicated: “1) identify outreach as an expected subcommittee function in the next FACA charter, and 2) allocate resources to support subcommittees’ outreach activities” (COSMOS 2001a).
In collaboration with the HES, ATSDR and NCEH should continue to evaluate and assess the effectiveness of the HES.
Further information on this evaluation is continued in the discussion of the Hanford site in the annex; however, it is important to note that in 2000, the director of the Hanford Education and Action League evaluated the HES and concluded that “the Hanford Health Effects Subcommittee stands as a sterling example of what can be accomplished when citizens are included early and often to deal with complex issues” (NCEH/ATSDR 2006). When HES subcommittee members were asked about the impact of NCEH and ATSDR at the sites, they noted that “health care providers are more aware than they used to be about potential health effects of chemical and radiation exposure at the DOE sites because of the work of CDC and ATSDR.” Also, many HES subcommittee
members reported that ATSDR played an important role in improving health education at the sites (COSMOS 2001a, 2001b).
Community and Tribal Subcommittee
In 1997, ATSDR established the Community and Tribal Subcommittee. The subcommittee, whose membership includes people living near Superfund sites as well as individuals representing organizations, was charged with the following: “(1) serv[ing] as an advocate for communities; (2) serv[ing] as a sounding board for ATSDR to develop policies and programs related to communities; (3) serv[ing] as a conduit to provide input, opinions, and feedback from communities to the BSC; and (4) facilitat[ing] outreach for the BSC to communities” (ATSDR/ NCEH 2006). The subcommittee also developed The Community/Tribal Advisory Process: A Citizens’ Guide (ATDSR/NCEH 2006).
ATSDR has reported that as a result of recommendations from the Community and Tribal Subcommittee:
“ATSDR worked with EPA to include health-based technical assistant grants in the Superfund Technical Assistance Grant program.
ATSDR established a formal Office of Tribal Affairs that coordinates ATSDR activities with tribes impacted by Los Alamos and Hanford.
ATSDR produced a video to train agency staff on how to work more sensitively with diverse communities and culture” (ATSDR/NCEH 2006).
Committee Evaluations of Site-Specific Communication Efforts
In addition to reviewing the overall agency dissemination and communication activities, the committee reviewed these activities in detail at three DOE sites: Hanford, Oak Ridge, and Los Alamos. These reviews are described in Annexes 5A, 5B, and 5C, respectively, to this chapter. The committee’s conclusions from these reviews are summarized in the following sections.
NIOSH and NCEH Many of the dissemination and some communication efforts at Hanford for these two agencies have been evaluated earlier in this chapter under the non-site-specific activities of these agencies. Related to additional communication activities, discussions held by the committee with 13 knowledgeable non-DOE and non-HHS individuals involved with Hanford from 1990 to 2005 revealed some consistent themes regarding both NIOSH and NCEH. First, there was awareness—in some cases, quite detailed—of the information dissemination activities of these two agencies. While value was placed on the techniques
of presentations at many types of public events, press releases, and the printed materials previously described, particular emphasis was placed on NIOSH’s efforts to inform workers and their representatives—and site managers—of both the progress and the results of various NIOSH projects. The Hanford Tanks Vapor Study was specifically mentioned several times as a good, recent example of NIOSH endeavors and also of a study that had a direct effect on policies and practices at Hanford.
There was also general agreement on a less positive feature. With only a few exceptions for both agencies, decisions about what to study, and how to study it, were made seemingly without any advance consultation with any affected workers or the general public or with technical experts affiliated with them. Similarly, while the one-way dissemination of progress and results was often quite satisfactory, there generally was no effective two-way communication back to either agency regarding, for example, midcourse additions or suggestions for the study. This was forcefully expressed by technical experts affiliated with various tribes, who perceived that their suggestions regarding potential exposure pathways were ignored (also, in this case, in their interactions with ATSDR).
ATSDR Based on reported materials from ATSDR, the Hanford Community Health Project (HCHP) appears to be a successful program. Its communication materials are understandable and useful to both the lay and the physician community, and its practice of partnering with various professional societies is commendable. Its web site has useful and understandable information and is easy to use. It is laudable that the agency brought in an outside public relations firm to evaluate its communication efforts and then made adjustments to help bring its important health education information to greater numbers of people in the region.
To its credit, ATSDR appears to have attempted to work with community groups and site-specific subcommittees to alter some of its studies or include within its action plans aspects of research or other actions favored by the community. That the agency was so invested in the medical monitoring issue and then that program was not funded indicated to citizens that a program that had been promised and planned over time was never a sure thing. The loss of the Hanford Health Information Network (HHIN) was a blow to many in the Hanford community who felt that this central information network was a considerable asset for informing individuals of happenings related to cleanup and remediation at the site as well as public health issues and may have detracted from the community’s trust in the agency. Whether the HCHP completely fulfilled the role originally established by the HHIN cannot easily be determined, although it did take on some of the group’s activities.
Advisory Groups According to the COSMOS evaluation, the Hanford HES was an active group that sought interaction and provided advice to NCEH and ATSDR. It appeared to be fully involved in many activities, providing advice that some-
times was used. The DOE site advisory board seemed much more removed from most HHS communication activities, and this was a missed opportunity for the HHS agencies to communicate with site opinion leaders and, through them, the various groups they represent.
Mass Media The newspapers examined provided frequent coverage of activities at Hanford, including relating scientific studies in lay language for workers and citizens. They also covered a number of important issues such as medical monitoring and cleanup concerns. They were actively engaged in relating Hanford information to readers in both Washington and Oregon.
To conclude, Hanford was rich in dissemination and communication opportunities for the HHS agencies, particularly going beyond conventional programs and developing ones that serviced an anxious worker and citizen population.
NIOSH and NCEH appear to have performed only their required communication tasks and not taken advantage of the potential for working with stakeholders in a more meaningful way. The exception to this is the TSP’s activities for HEDR, which were truly comprehensive and impressive as early communication efforts. ATSDR, given its mandate, had more flexibility to work directly with citizens, adjusting some programming and research to meet concerns and needs, in particular by developing the HCHP. Its programs appeared to be effective and, according to the agency, reached large numbers of individuals. However, without independent outside evaluation, the committee cannot estimate the impact of any of these programs on Hanford workers, their families, and other citizens in the region.
Oak Ridge Community
In the absence of any independent professional evaluation, assessment of the effectiveness and impact of all communications efforts with communities at the Oak Ridge Reservation and surrounding area is subjective and anecdotal. Comparing the communication and outreach situation in Oak Ridge in 2004 versus 1990 at the beginning of this program, it is safe to say that progress was made.
ATSDR should be given high grades for its very active and engaged connection with the Oak Ridge communities. It offered opportunities for the workers and the community in general to air their health concerns as well as to provide informative presentations to professionals in the medical community and the general public. The briefs that it published attempted to inform the populace on various issues that had been brought to their attention through community meetings. It is difficult to judge the value of this information to members of the community since there was no independent assessment of the communication effort. The committee feels that the communication efforts stopped short of achieving an open and trusting dialogue at this site, as evidenced by published
letters to the editor in the Oak Ridger, a local newspaper, which indicated a divided option regarding the closing of the ATSDR office in Oak Ridge last year.
There is clearly a higher level of community involvement in health and environmental issues through a number of organizations (Oak Ridge Health Agreement Steering Panel, Oak Ridge Reservation Site Specific Advisory Board, Oak Ridge Reservation Local Oversight Committee, Oak Ridge Reservation Health Effects Subcommittee) as well as activist groups (Oak Ridge Environmental Peace Alliance, Coalition for a Healthy Environment), which get the attention of and are responded to by DOE management. While these channels of communication to DOE exist, to characterize them as effective in creating a common agenda for health and environment would be an overstatement. Nonetheless this community involvement through organizations and advocacy groups has resulted in an improvement of the situation in Oak Ridge regarding availability of information on health and environmental issues. The recent elimination of ATSDR activities in Oak Ridge does not bode well for further improvements in the dialogue with the community and workers, given that hazardous cleanup and incinerator operation will continue at Oak Ridge.
DOE’s establishment of a “one-stop” information center on such issues is further evidence of a greater degree of openness toward the community on the part of DOE. The large number of publications from both ATSDR and DOE regarding health and environmental issues in the Oak Ridge community are available publicly through the DOE Oak Ridge Office Information Center. However, as stated throughout this chapter, it is clear that most of these publications were not designed particularly well for understandability by the average person in the community and therefore were interpreted by many as government “propaganda.”
The Oak Ridge Reservation HES itself appeared to be controversial, according to a review of its meeting minutes as well as press reports about it. Some citizens claimed that the committee was serving the government agenda. Still others lamented the demise of this committee due to budgetary cutbacks because its disappearance marks the end of a useful channel of communication with the government about community health problems. Undoubtedly, both positions have some merit to their claims (Rogers 2005d).
Los Alamos Community
Los Alamos appears to have the least developed dissemination and communication program of the three sites studied in depth by the committee. The LAHDRA web site provides understandable information about the project. The full text of the interim report is available on the site as are the locations of libraries where members of the public can view retrieved documents and directions for getting to these libraries. Although much of the information on various “pages” of the web site was brief, there were links to other sites with more
information. The web site itself was easily used, providing basic information about the project. It was not clear when the web site had last been updated.13
NIOSH has included Los Alamos in some of its multisite studies and disseminated information about the results of these studies to workers in its usual manner. ATSDR appears to have less of a presence at this site than at Hanford and Oak Ridge, in both PHA and educational activities. The site-specific advisory board seems active and offered some communication evaluation advice to ATSDR through 2005 from its Community Involvement Committee. The fact that this committee has now disbanded is not seen as a good sign. Media coverage does not appear to have been as heavy at this site as at Oak Ridge or Hanford, although there seems to be a range of topics being presented to readers about worker and citizen issues at Los Alamos.
To summarize, less effort appears to have been put into dissemination and communication efforts for workers and citizens at this site than at the other two studied. However, no information is available from any internal or outside evaluation of the dissemination and communication programs occurring at Los Alamos, which handicaps the committee’s evaluation of these efforts.
As noted early in this chapter, communicating about radiation risks is difficult, and federal agencies trying to do this face a number of serious challenges. These include the level of public fear about radiation from these sites; the history of secrecy at these sites, which resulted in a loss of public trust and confidence in federal agency operations that undermined information acceptance; and the complexity of the technical language and concepts of both the radiation and the epidemiology.
In addition, as noted in the beginning of this chapter, scientific and technical information alone seldom serves to resolve issues. Environmental controversies are typically amalgams of scientific, political, economic, sociological, and ethical considerations, and while providing the best possible scientific and medical information may serve to lessen disagreement or forge consensus about “technical” aspects of the issue, even if these goals are achieved, other dimensions of the issue may remain (Johnson 1999, as cited in Tuler et al. 2005). Research has shown that different members of a community can have different preferences about how they want such programs to be conducted and about their criteria for determining the effectiveness of such programs. For all of these reasons, developing an environmental or health risk communication program to meet all of these
Los Alamos Historic Document Retrieval and Assessment Project. 2006. Available at http://www.lahdra.org/.
needs is a complex process that requires considerable levels of commitment, time, money, and personnel on the part of government agencies.
The committee used a number of criteria developed over the years in the field of risk communication to evaluate the HHS agencies’ communication efforts. These included that a message should “(1) emphasize information relevant to any practical actions individuals can take; (2) be couched in clear and plain language; (3) respect the audience and its concerns; and (4) seek to inform the recipient, unless conditions clearly warrant the use of influencing techniques” (NRC 1989). To evaluate these factors, committee members reviewed a sample of printed and electronic materials from HHS agencies for relevance, accuracy, accessibility, timeliness, comprehensibility, and credibility. Credibility was particularly important because effective communication requires authoritative and trustworthy sources who focus on the issues that recipients most need to understand. In addition, the committee tried to establish whether the developers of the communication programs had evaluated both internally and externally whether their risk messages had been understood and their risk communication programs were effective. Finally, believing as many others do that an effective risk communication program must have a minimum of two-way communication interactions, the committee looked at methods used by HHS agencies for the public and workers to provide opinions, recommendations, and other inputs as well as have an influence on decision making.
Although bringing the public into a participatory process is important and has been included by both DOE and HHS in their site-specific Citizen Advisory Boards and HESs, respectively, two important priorities for the sponsoring government agency should be present for successful public and stakeholder participation outcomes and increasing public trust. The first is that the agency initiating the public participation process should be willing (or able) to make the kinds of commitments needed to make the process successful. This goes beyond time and money, although those are important. In such a situation, agency decision makers have to be flexible and open-minded about the nature of the participation and its outcomes. For example, they should welcome the desire of public participants to “redefine problems, focus on different issues, or otherwise change the nature of questions that agencies ask” (Beierle and Cayford 2002).
The second important priority is for agency decision makers to recognize the legitimacy of public values and understand that those values may lead to priorities and conclusions that agency personnel, who have their own understanding of what the public interest is, originally may consider “wrong.” According to a recent meta-analysis (a statistical analysis of several or more studies that address a set of related research hypotheses) of 239 cases of public involvement in environmental decision making over the past 30 years, failure of an agency to commit to these two important priorities threatens the legitimacy of the public participation process and whatever public trust the lead agency may have (Beierle and
Cayford 2002). To paraphrase, “truth is in the eye of the beholder” and the goal for a successful communications effort should be to keep that in mind at all times.
Another issue that complicates public and stakeholder involvement is how much influence should be given to the public and stakeholders. Many people agree that the public participation process requires some level of public influence. Yet, in most public meetings, citizens only provide information and comments and agencies have little legal obligation to act on these contributions. According to the meta-analysis, “one of the principal reasons offered for low levels of participant motivation was a perception that the public had little influence over agency decisions.” Such perceptions work against building public trust. The same study showed that “the goal of incorporating public values, which essentially measures the public’s influence, is highly and significantly correlated with the goal of public trust. In low-trust situations, then, the public may need to be granted more influence to convince them of the legitimacy of the public participation process” (Beierle and Cayford 2002).
Expanding on this concept, a report on risk by the NRC (1989) noted: “Citizens of a democracy expect to participate in debate about controversial political issues and about the institutional mechanisms to which they sometimes delegate decision-making power. A problem formulation that appears to substitute technical analysis for political debate, or to disenfranchise people who lack technical training, or to treat technical analysis as more important to decision making than the clash of values and interests is bound to elicit resentment from a democratic citizenry” (NRC 1989). This issue becomes quite important when considering actions and opinions of members of site-specific Citizens Advisory Boards and HESs at DOE facilities.
Information dissemination activities to citizens and workers at DOE sites by the HHS agencies were extensive, often tailored to the needs of specific audiences, and sometimes accompanied by useful public meetings, small group discussions, and other face-to-face exchanges. These activities benefited citizens and workers by providing them with needed information about health risk concerns. Transfer of these communication activities from DOE to the HHS agencies fulfilled an important component of the commitment in the MOU to provide objective information from a health-oriented agency. This transfer also allowed DOE to focus on a new primary mission of site cleanup and eased some of the public criticism directed at it concerning radiation exposures.
Each of the HHS agencies had its own charge and special responsibilities for communicating with DOE site workers and surrounding community members. These agencies carried out their dissemination and communication efforts with varying degrees of success related to their charges. Because NIOSH efforts centered on communicating research findings to workers, among others, its efforts were more limited in scope than those of ATSDR, which has a major communication role with the community defined as part of its mission. NCEH itself appeared to undertake few direct communication efforts, but functioned prima-
rily—at least in the elements the committee reviewed—through its subcontractor, which performed admirably in communicating about HEDR issues at Hanford.
Both NIOSH and ATSDR had identifiable, discrete communication plans, although the degree to which each carried out those plans varied. NCEH did not appear to have a communication plan. It told the committee that “NCEH’s goal was to keep the public informed through meeting notifications (by contractor mail-outs) to interested individuals and organizations and by posting meeting announcements in the Federal Register” (NCEH 2006c).
NIOSH’s main instrument of communication to workers, the Brief Report of Findings, was not user-friendly. While these reports sought to inform their readers about the results of scientific studies that were important to workers and their families, extensive technical language was used in the reports and the committee questions the effectiveness of this tool. NIOSH said that it “held extensive consultations with workers and management” and assessed what workers wanted to see in the summaries, which included clear language, but the committee does not think this objective was achieved.
While NIOSH appeared to internally evaluate its written products, the lack of any external evaluation of the NIOSH dissemination efforts handicapped an evaluation by this committee. Written materials and records provided by NIOSH relating the success of meetings and other communication methods employed by the agency to interact with workers and members of the public about its studies were all presented from the view of the agency itself and were activity-based. NIOSH did not provide information or data on how the audience responded to these activities; therefore there was no adequate basis for a third-party assessment.
The HEDR Project, which came under NCEH purview in its later stages, serves as a good example of a concerted effort to communicate with the public. Selected written products distributed to the public through this program were reviewed by the committee and found to be understandable, timely, and informative. Large mailing lists and use of commercial media helped to ensure that the messages reached a large regional audience. This program used various internal and external evaluation techniques to make sure that its messages met the needs of the target audience, reached the intended audiences, and were understood.
Generally, ATSDR appears to have fulfilled its requirements to provide information to citizens living near nuclear weapons sites. Based on its examination of the communications sections of four PHAs, the committee believes that ATSDR made an effort to make sections of these reports understandable to interested members of the public and to address their concerns in these reports. However, a number of responses to questions from the public in the completed PHAs seemed perfunctory and not very informative. In addition, the agency’s discussion about using the most conservative measures in PHAs for evaluating public health concerns could be construed as misleading by concerned citizens since the ATSDR definition of what is considered scientifically “conservative” does not agree with the linear extrapolation of health effects to very low doses used by
other federal agencies such as the EPA or the United States Nuclear Regulatory Commission. If it has not done so already, this policy could create public distrust related to PHAs. The introductory chapter of the ATSDR’s toxicological profiles (PHSs) and the ToxFAQs based on the profiles were relatively easy to read and translated the health information into understandable language. The use of a question-and-answer format provided easily accessible information for those living at the sites.
ATSDR’s web site has many items and links on it conveying and explaining information to interested readers about health issues at these sites. In its overall evaluative efforts, it appeared that the agency made a concerted attempt to obtain public input and feedback to improve its dissemination efforts. As discussed in the annex on Hanford site activities, ATSDR’s targeted efforts such as those in the HCHP for communicating with different constituencies appeared to the committee to be successful, although there was no actual discussion with recipients of information about these programs. Developing materials for Hanford area physicians to help them recognize symptoms and specific illnesses related to radiation exposure and then developing partnerships with various professional organizations to distribute these materials within professional communities constituted an excellent endeavor. Also, hiring a public relations firm to reinvigorate efforts to contact citizens who had lived at Hanford during the plant’s operational years to provide them with information about potential risks and what to do about them was an effective move on the agency’s part. Better external evaluation of these efforts beyond just numbers of individuals reached or stories placed in newspapers would have given this committee, and more importantly ATSDR, a more accurate measure of this plan’s success.
The two other HHS agencies also have web sites. All three agencies appear to depend on these web sites for communicating to workers and the public. Although web sites are useful and efficient, and can reach large numbers of people, they do not constitute in themselves an effective total communication strategy, nor is counting hits on a site an evaluation of its effectiveness.
Another method for reaching large numbers of people—providing information to the mass media—appeared to be used by the three HHS agencies to varying degrees. However, the committee did not review many press releases or other agency activities directed at the media and therefore cannot comment on their effectiveness.
Seeking input from citizens in affected communities through Citizen Advisory Boards and HESs can be an effective public participation mechanism, although it is not the only one that can be employed. Working with citizen groups can be both a rewarding and a frustrating experience for government officials. Regarding the public benefits of the HES, an external evaluation effort, the COSMOS report, found that the HES provided “a formal way of advising the government on public concerns; improving communication with the government; and providing access to information.” In addition, the federal agencies noted that
the process encouraged them to learn more about community concerns (COSMOS 2001a, 2001b).
Part of the problem government officials have when dealing with advisory boards and committees relates to issues discussed in the introduction to this section: perceptions, perspectives, and needs of stakeholders differ from those of government officials. Reconciling these differences is not an easy task, yet it is a critically important one to ensure citizen input and public participation into both communication and decision-making processes.
To its credit, ATSDR appears to have attempted to work with community groups and site-specific subcommittees to alter some of its studies or include within its action plans developing aspects of research or other actions that the community favored, particularly related to the Infant Mortality Study and medical monitoring at Hanford (see Annex 5A). The COSMOS evaluation found that the Hanford HES provided consensus advice and recommendations to HHS agencies about a variety of issues, including communication, and that agencies often responded to the recommendations in writing and orally at the meetings (COSMOS 2001a, 2001b). The COSMOS evaluation indicated that the subcommittee members surveyed strongly or generally agreed that ATSDR provided feedback on their recommendations, while NCEH and NIOSH were found to be slightly less likely to consider the advice of the subcommittee (COSMOS 2001a, 2001b). Several subcommittee members, in particular, noted that NCEH staff did not always stay for full meetings. They perceived this as a lack of interest and commitment to the advisory process (COSMOS 2001a, 2001b). Related to Hanford, the committee was surprised to find that some members of DOE’s Hanford Advisory Board knew very little about most of the HHS activities at the site. That such an influential group was not effectively informed about these efforts was definitely problematic for keeping people at the site informed.
Not every person or citizen group related to DOE sites has had good interactions with site-specific committee activities. In 2004, three organizations—Tri-Valley CAREs (Communities Against a Radioactive Environment), Western States Legal Foundation, and San Francisco Bay Area Physicians for Social Responsibility—and several citizens resigned from the ATSDR Livermore Lab “site team.” According to a letter sent to ATSDR, these groups and individuals had “participated in good faith in the process for eight years, attempting always to mend the flaws in the ATSDR’s PHA process. We have used our individual and organizational in-house scientific expertise and have also hired independent scientists to offer needed comment and criticism on the individual ‘health consults’ and studies undertaken by ATSDR that comprise this final document. For eight years, ATSDR has disregarded our individual and collective technical, scientific and community expertise. Similarly, our input on improving the site team process and the need to enhance its community involvement has fallen on deaf ears.” They resigned, they added, because the site team process was being used by
ATSDR to imply community participation and acceptance of ATSDR’s “flawed science and the resulting conclusions” (Kelley et al. 2004).
A group of citizens at Rocky Flats also took exception to the methods and conclusions of an ATSDR PHA done for that site, although most of their points related more to the science of the PHA than to communication issues (Moore 2004).
While the public participation process is not an easy one for any of the agencies or citizen groups involved, the committee believes that such participation, particularly related to Site-Specific Advisory Boards and HESs, is vital. Committee members were very concerned to learn that the activities of the HHS HESs at almost all of the sites studied had been ended. While there are still DOE Site-Specific Advisory Boards active, they may not be sufficient to provide the citizen and worker input needed for either DOE or HHS agency research programs that still exist and need to continue.
Also of great concern to this committee was that the efforts made by the three HHS agencies over the years to communicate with workers and citizens about radiation risk issues are being curtailed. The need for HHS, working under the terms of the MOU, to develop more effective two-way communication programs containing relevant, accessible, and comprehensible information about the safety and health effects of the operations of DOE facilities is a central theme of this report. This need can be expected to increase as the operations of several of these facilities change and perhaps expand. Cleanup activities entail a somewhat different set of worker safety and community health issues than production. As facilities change their activities, new or differently prioritized safety and health issues will emerge; new research questions may arise; new organizations or advisory bodies may form; and new modes of interaction may be necessary. All of this points to a need for DOE and HHS to ensure that the scope of research and communications activities remains aligned with the activities of the facilities. Despite budgetary constraints, there is still a serious need for getting information to and from workers and citizens about these cleanup activities and the risks involved with them, whether the information is with HHS, DOE, or site contractors. It seems that the lessons learned from 15 years of more open communication under the MOU are now not being heeded, and as a result, continuing and new suspicions and mistrust could again polarize these communities.
FINDINGS AND RECOMMENDATIONS
1. Information dissemination activities to citizens and workers at DOE sites by HHS agencies were extensive and benefited the target audiences by giving them needed information about health risk issues. Cleanup activities at DOE sites have led to continuing perceptions of significant health risks for citizens and workers, particularly as they age. This situation necessitates continuing and im-
proving health risk communication and education programs at DOE sites. As a result, the committee recommends the following:
HHS agencies should be the continuing main source of active risk communication and education programs at DOE facilities due to significant evidence of continuing distrust of DOE and its contractors. DOE should work with the HHS agencies, its own contractors, and citizens’ advisory boards to try to gain back trust in communities near its facilities with its own open, two-way communication efforts.
Dissemination and communication efforts should be coordinated among the federal agencies involved as long as such coordination does not affect trust issues for HHS agencies among workers and citizens in and near DOE facilities.
2. While HHS information dissemination was generally laudable, communication activities related to worker and public health were variable in quality and uneven, agency to agency. Again, for the purposes of this report, the committee drew a distinction between dissemination and communication. Dissemination is typically referred to as a one-way process, where information is distributed, publicized, or broadcast widely, while communication implies a two-way process, including an interchange of knowledge, thoughts, and opinions. In its evaluation, the committee also had to look closely at the communication efforts of the HHS agencies. Guiding principles for effective risk communication, as discussed previously, were not always employed by the HHS agencies. Many studies of the nuclear industry as well as other hazardous operations (many of them cited earlier) have recommended best practices that could be effective in communicating the risks involved in such operations to both worker and community groups. As a result, the committee recommends the following:
Both DOE and HHS agencies should develop improved long-term communication plans that incorporate risk communication lessons learned during the past 15 years from scholars and practitioners (including those at these agencies). These improved communication plans should continually be updated and reviewed by outside risk communication experts every few years.
DOE and the HHS agencies should significantly increase organizational, financial, and personnel assistance for communication activities at DOE facilities.
3. While the committee recognizes difficulties inherent in communicating about risk to lay persons and in the public participatory process, it believes that open communication involving dialogue among the agencies, workers, advisory
bodies, and the public is critically important and needs improvement in a number of areas. As a result, the committee recommends the following:
DOE and the HHS agencies should specify mechanisms in their improved risk communication plans for achieving more effective, open, two-way communication with workers and the public about health risks associated with cleanup activities as well as continuing or new missions at DOE facilities. Risk communication research on how best to incorporate public participation and work with citizen groups should be applied to these plans, remembering that the specific best practices at one site might not necessarily be the best practices at another site. Agendas for public and worker meetings should be developed in concert with citizen and worker representatives to ensure that stakeholders’ concerns and opinions are treated with respect and responded to seriously.
The HCHP directed by ATSDR should be continued to ensure good public health information about risks at that site, particularly during cleanup activities. Similar projects should be established at other DOE sites where serious health effects issues exist.
DOE Site-Specific Advisory Boards have been an important communication element at DOE sites. These should be continued as long as cleanup work continues at the sites and can be improved by including ex officio representatives from both DOE and HHS agencies.
Similarly, the HESs at DOE sites, which were considered highly successful in the COSMOS report evaluation, were a very important communication tool and should be reconstituted at DOE sites where serious concerns about health effects issues exist.
All site-specific advisory boards and any reconstituted HESs should have a subcommittee that reviews and recommends actions on risk communication to workers and the public. This subcommittee should work with DOE and relevant HHS agencies to provide overview, feedback, and advice on communication activities. To further these goals, site-specific advisory boards, reconstituted HESs, or these risk communication subgroups should add a communication professional as a member, if there is no such person already on the group.
4. There has not been enough outside evaluation of the communication aspects of the HHS programs. Best practices in risk communication need professional evaluation, particularly to meet the needs of different stakeholders. As a result the committee recommends the following:
HHS agencies and DOE should engage in periodic and systematic evaluations of their communication efforts using the most current risk communication research and practices available. These evaluations should include development of a framework by which to assess the effectiveness of their communications to stakeholders, as well as the use of both internal and external evaluators.
Such assessments would include not only evaluating the quality of the communication products and the ability to disseminate information effectively but, more importantly, an assessment of how the information is interpreted, perceived, and accepted by the affected communities and workers. To ensure that these evaluated efforts are adjusted to make them more effective, internal evaluations should be done yearly and external evaluations should be done at least every 3 years to ensure that the most current feasible risk communication research and practices are being applied.
THE HANFORD COMMUNITY
The Hanford Nuclear Reservation, now known as the Hanford site, was selected in 1943 as one of the sites for the Manhattan Project to produce plutonium for nuclear weapons production. That spring, residents from three towns were evacuated from a 640-square-mile area. A 560-square-mile portion of that area was later renamed the Hanford Nuclear Reservation. For a number of years, the reservation was used to process spent nuclear fuel and to extract plutonium for national defense. In 1990, its final reactor was stopped and the Hanford mission became waste management and remediation. Also in 1988-1989, the Hanford site was placed on the NPL by the EPA with four areas identified as priorities—the 100-, 200-, 300-, and 1100-Areas. On May 15, 1989, representatives of DOE, the Washington State Department of Ecology, and the EPA signed an agreement to clean up radioactive and chemical wastes over the next 30 years. This agreement is known as the Tri-Party Agreement, or the Hanford Federal Facilities Agreement and Consent Order (ATSDR 1997b). As noted earlier, public distrust in DOE’s handling of worker and community health studies at the site led to the MOU between DOE and HHS to transfer not only the worker and public health studies, but also the communication of their results to workers and citizens, from DOE to HHS. Effective communication, particularly regarding studies of health effects related to exposure to ionizing radiation, is an especially important component of the current epidemiological research program managed by HHS.
Essential components of the HHS outreach efforts include distributing the findings of health studies and providing the workforce and the community with information about potential exposures to toxic agents associated with the sites.
NIOSH has been involved primarily in conducting health studies of workers, while NCEH and ATSDR have conducted studies to evaluate exposures of the surrounding communities. A variety of techniques have been used by these agencies to varying degrees, ranging from presenting results in public meetings, to sending mailings to affected individuals and providing advice to the medical community. Many of the three agencies’ general communication activities have already been discussed in this chapter, so the site information here deals with additional programs at each of the sites selected for review by the committee.
Agency Communication Efforts
NIOSH and NCEH
NIOSH has conducted more than 10 studies at the Hanford site and has produced numerous publications resulting from these studies, including the Brief Reports of Findings discussed earlier. Its primary responsibility is to interact with workers and their representatives, and it appeared to treat those at Hanford in the same manner as it treated those at other DOE facilities.
NCEH’s research at the Hanford site, as noted earlier, included the HEDR Project and the HTDS. As noted earlier, the latter effort was congressionally mandated in 1998 and is not considered part of the work under the 1990 MOU, thus, it is not discussed in detail in this report.
NCEH was responsible for presenting results of the HEDR to the affected communities but was not responsible for directly informing workers. Although NCEH inherited the HEDR Project, it did not interfere with the communication plan developed and run by HEDR’s Technical Steering Panel. Again, NCEH stated that its “goal was to keep the public informed through meeting notifications (by contractor mail-outs) to interested individuals and organizations and by posting meeting announcements in the Federal Register” (NCEH 2006c). In terms of written materials that supported communication efforts, NCEH and HEDR’s Technical Steering Panel produced several booklets: Initial Hanford Dose Estimates; Summary: Radiation Dose Estimates from Hanford Radioactive Material Releases to the Air and the Columbia River; and Evaluation of the HEDR Source Term and HTDS Power Calculations (NCEH 2006b). The committee reviewed the first publication and found it targeted to its lay audience and relatively easy to read given the difficulty of the technical material. It included some useful charts and illustrations plus a question-and-answer section.
Other NCEH methods of outreach included agency personnel attending meetings with formally established advisory committees, including the Hanford Health Effects Subcommittee (HHES) (NCEH 2006b).
ATSDR, with major communication responsibilities at DOE sites, has been very active at Hanford in a number of areas. Its activities at the Hanford site began in 1989, and it produced PHAs for the 100-, 200-, 300-, and 1100-Areas. The communication aspects of these PHAs have been discussed in the general section on ATSDR in this chapter. However, other important communication elements of the ATSDR program were specific to Hanford and are reviewed here (see Chapter 3).
Public Health Action Plans Environmental health education was one of the major components of public health action plans that resulted from the PHAs done by ATSDR at Hanford. These plans recommended that such education “be undertaken to help the community and tribes understand their potential for exposure and to assess adverse health effects potentially related to activities in the Hanford 100, 200, and 300 Areas. The agency, in concert with the communities and tribes, will determine the necessary education programs that interface with existing local programs and focus on the information needs of the tribes and the concerned members of the community. This activity and implementation of the necessary programs will be coordinated with the Hanford Health Information Network, the Hanford Health Effects Subcommittee, and other relevant groups” (ATSDR 1997b).
The plans also called for environmental health education to advise public health professionals and the medical community of the health concerns of communities near Hanford and the nature and possible consequences of exposure to Hanford contaminants. As a result of these plans, ATSDR established a number of health education and promotion activities.
Hanford Community Health Project One of the results of this need for an environmental health education program at Hanford is the Hanford Community Health Project (HCHP). The goal of the project is to “assist individuals and their health care providers in making informed choices regarding their thyroid health as a result of potential exposure to radioactive iodine from Hanford” (ATSDR 2006b).
Much of the information on ATSDR’s web site about Hanford (http://www.atsdr.cdc.gov/hanford/educational/) has been developed by and or coordinated through the HCHP. The web site includes the following information:
A community resource area with brief information about health effects related to exposure to iodine-131, a map of the Hanford site, a list of methods for sharing information with family and friends about I-131 exposure, and an exposure self-assessment quiz (ATSDR 2005a);
An informational pamphlet describing types of cancers in easily understood terms; and
Numerous links to information developed for the now defunct HHIN, which is discussed below.
In developing the HCHP, ATSDR had to overcome not only a distrust of government agencies, but also message fatigue and a 40- to 50-year time span since the radiation releases occurred. To do so, it used public relations strategies to re-engage and revive interest among “community members who had become apathetic after years of perceived government inaction” (ATSDR 2005b).
To help establish the HCHP, ATSDR awarded a contract to the National Opinion Research Center in 1999.
The HCHP faced a number of challenges in developing its Hanford program:
Radiation exposure had occurred as much as 50 years ago, so those exposed might be disengaged from the issue or unaware of information made available since exposure.
The exposed population was geographically disperse because many had moved from the area.
Public anger and mistrust resulted from the federal government’s role in exposing citizens to radiation, creating barriers to effective communication by a government agency.
The HTDS had failed to show a link between exposure and increased incidence of thyroid disease, but this finding was in direct opposition to what the public believed.
There was a desire among downwinders for additional health-related information but a lack of awareness of where to access that information (ATSDR 2005b).
To assess community needs, the HCHP initially surveyed approximately 500 individuals who were potentially exposed to I-131 at the Hanford site to determine their information and health care service needs. More than 80 percent of those surveyed indicated that they were interested in receiving educational materials about thyroid disease and I-131 exposure (ATSDR 2006b). Based on this initial survey, the HCHP set out to establish a clearinghouse of related health information, design a web page to disseminate information and materials, and improve and expand outreach efforts (ATSDR 2006d). As part of these efforts, the HCHP developed the following:
A two-page pamphlet, “Request for Medical Evaluations for Past Exposure to Iodine-131,” was developed for individuals concerned about thyroid disease to give to their physicians during an examination. The pamphlet includes a map, information to discuss with the physician about potential exposure to iodine, background discussion of the Hanford site, health effects of I-131 exposure, International Classification of Disease codes for procedures and symptoms re-
lated to thyroid disease, a brief radiation primer, and additional contact information (ATSDR 2006c).
Health care provider information contained a physician’s guide to I-131 exposure; case studies developed for physicians; and two instructional videos for physicians, “Hanford: The Psychological Dimensions of Radiation Exposure” and “Thyroid Disease Management and Radiation Exposure” (ATSDR 2005a). The guide for physicians includes background about the Hanford site, a list of relevant clinical tests, and a list of additional resources (ATSDR 2004a). The thyroid disease management video includes a review of thyroid disease and related exposure to I-131, expert discussion of the disease with information about symptoms and treatment options, and background about the HTDS, in addition to other information available on the topic (ATSDR 2005a).
The HCHP offered seminars at physician meetings, set up booths at medical society meetings, and mailed information directly to physicians (ATSDR 2006b). It also provided continuing education credits. These efforts were aimed at increasing physicians’ awareness and addressing the perception among down-winders that their health care providers knew little about Hanford’s history.
In 2004, a public relations firm was hired to assist with HCHP efforts. The objectives were to increases awareness about the potential risk of exposure and to increase enrollment on the mailing list and visits to the HCHP web site. The firm targeted the audience using a variety of communication routes and trusted sources including the health care community, local media, and community organizations (ATSDR 2006b). Outreach to medical organizations resulted in 40 partnerships with clinical endocrinologists, physicians assistants, and nurses. These organizations agreed to disseminate information in newsletters and magazines, post information on their organizational listserves and web sites, and distribute information during meetings, with a total potential reach of more than 215,000 health care providers.
In distributing information to community organizations, the HCHP contacted unions, labor councils, city chambers, major employers, lodges, and other local community organizations and encouraged them to link to the HCHP web site. Partnerships were formed with 24 community organizations that agreed to disseminate information.
The public relations strategy used the interpersonal communication influence of family and friends by encouraging downwinders on the HCHP mailing list to send pre-stamped postcards to their friends and family who might be unaware of potential exposure and prompt them to learn more about potential health risks. Convincing journalists in the region of the importance of this health information and the need for disseminating it proved difficult, but some articles and television news stories were generated.
ATSDR reported that “in less than eight months, over 70 partnerships were generated with health care, the community and peer-to-peer organizations, 27
media outlets covered HCHP and mailings were sent to 34,500 people throughout five states, resulting in over 1.6 million total program impressions. This outreach generated over 8,000 unique web site visitors as of August 21, 2005, increasing the average weekly unique visitor from 21 to 280” (ATSDR 2006b).
Follow-up Activities to a Public Health Plan That Involved Community Interaction at Hanford
1. Infant mortality study. The public health action plan for the Hanford 200 site recommended a follow-up study related to infant and fetal death (ATSDR 1997a). The request for this study came from the HHES, described in more detail below, which recommended that ATSDR evaluate reports of an increased infant mortality rate during 1940 to 1952 in communities that were likely exposed to I-131 near the Hanford site. Subsequently, ATSDR initiated the Hanford Infant Mortality and Fetal Death Analysis, which reviewed the infant and fetal mortality rate in eight Washington counties during these years. The results indicated that the mother’s residence in a potentially high I-131 exposure area during a specific period of time may have resulted in preterm births (ATSDR 2000).
2. Medical monitoring. Another follow-up activity from the same public health plan was a recommendation for medical monitoring at Hanford. CERCLA allows ATSDR to develop medical surveillance programs for communities potentially exposed to contaminants at Superfund sites, including Hanford. ATSDR estimated that 14,000 people who lived in areas surrounding the Hanford facility were potentially exposed to iodine-131 at levels high enough to pose a significant health risk, including thyroid disease and a number of other health issues. ATSDR announced its decision on February 7, 1997, that a medical monitoring program was necessary for people exposed to radiation from the Hanford site (ATSDR 1997c). The agency signed a decision memo to implement the program, pending funding from DOE (ATSDR 1997c). At that time, the purpose of the program was to “provide medical evaluation of specific health outcomes in the population at significantly increased risk after past exposures to iodine-131 releases from the Hanford Nuclear Reservation” (ATSDR 1997c).
ATSDR noted that it worked closely with the HHES in designing the proposed medical monitoring program by “developing information, including radiation risks, eligibility criteria, medical and laboratory procedures, referral mechanisms, program operations, ethical concerns, and confidentiality issues” (ATSDR 1997c). The HHES made more than 20 consensus recommendations to ATSDR regarding the proposed medical monitoring program (COSMOS 2001a, 2001b). Beginning in 1995, five workshops were held to discuss the need for the medical monitoring program.
In 1997, ATSDR produced a document describing its position, Hanford Medical Monitoring Program: Background Consideration Document and ATSDR Decision (ATSDR 1997c). It included a proposed plan for education and out-
reach activities to be utilized during the program. The outreach goal for the medical monitoring program was “to build upon and enhance services and networks whenever possible to identify eligible people, disseminate program information, and coordinate program education activities” (ATSDR 1997c).
However, several factors worked against development of the Hanford Medical Monitoring Program. In 1999, the Institute of Medicine (IOM) and the NRC released a report reviewing the National Cancer Institute’s study of estimated exposures and thyroid doses received by the American people from iodine-131 in fallout following Nevada atmospheric nuclear bomb tests (IOM 1999), which found that there was “no direct evidence that early detection of thyroid cancer through systematic screening (rather than through routine clinical care) improved survival or other health outcomes” (IOM 1999). This may be due to the fact that thyroid cancer screening has two problems. First it is biased towards finding tumors that are slow-growing or benign and that might never have led to significant morbidity if left untreated. Second there are risks and costs involved in any procedures, ranging from simple biopsies to surgical removal of thyroid gland itself, that may result from screening. The report recommended against a systematic screening program for thyroid cancer for either the American population generally or regional populations believed to have been exposed to iodine-131 from the Nevada tests. It suggested instead that HHS should focus on a program of public information and education about the consequences of the Nevada weapons test (IOM 1999).
Ultimately, the Hanford proposed medical monitoring program was not funded. Because there was extensive community support for the program, its elimination posed a number of communication challenges for ATSDR. One report noted that most HHES members felt that they have not “received an honest or complete explanation for why the medical monitoring program was not funded” (COSMOS 2001a, 2001b).
Additional Communication Resources: Hanford Health Information Network In addition to information being supplied by HHS agencies and subcontractors, the Hanford community had a major information source available for 9 years. Established by Congress in 1991, the HHIN served as a primary educational and outreach resource for individuals concerned about health effects related to past radioactive releases at the Hanford site. The HHIN included the collaboration of the Washington, Oregon, and Idaho health agencies and nine Indian Nations. During its existence, the HHIN maintained an extensive mailing list, a toll-free number for people with questions, a directory of organizations, a web site, and an extensive list of outreach materials. Some of the outreach materials included: Overview of Radiation and Known and Potential Health Effects; Health Care: Finding a Provider and Getting Health-Related Records; How to Find and Work with a Health Care Provider; Coping with Uncertainty and Ill-
ness: Strategies; Maps of the Exposure Area, Indian Nations Affected, and the HEDR Study Area; Glossary; and Monograph for Health Care Providers.14
The HHIN was closed in 2000 due to lack of funding. Archives of its work are maintained by Gonzaga University, and its web site is currently linked to the Washington Department of Health. Many of the materials developed by the HHIN also are currently linked to the HCHP web site.
Stakeholder Input: Citizen Health Effects Subcommittees and Advisory Boards
Hanford Health Effects Subcommittee
The HHES was created in 1994 by ATSDR under the Citizen’s Advisory Committee on Public Health Service Activities and Research, and ATSDR was responsible for its administration. Representing a variety of interests, members included tribal nations, affected downwinders, labor organizations, and scientific and medical experts, among others. The HHES provided HHS agencies with guidance on handling public health activities at the Hanford site. In addition, its meetings provided a public forum for educating the community. For example, although ATSDR is not responsible for communicating health-related information to affected workers, HHES meetings still served as a forum for communicating information to workers about off-site and non-occupational exposures (ATSDR 2006b).
Four work groups were established to address a variety of issues: (1) public health assessment; (2) outreach; (3) studies; and (4) public health activities. During its duration, 25 meetings of the HHES were held. All meetings were open to the public and were publicized through the Federal Register, and mailings to advertise the meetings were sent out to approximately 30,000 individuals (COSMOS 2001a, 2001b). The subcommittee was disbanded in 2004.
COSMOS Evaluation of HHS Health Effects Subcommittees In 2001, the COSMOS Corporation published an evaluation of the HESs that included an in-depth evaluation of some site-specific activities, including those at Hanford. As discussed previously, COSMOS surveyed subcommittee and community members as part of its evaluation, although there has been some criticism of this study because of the small numbers of individuals who participated (Tuler et al. 2005). Despite this criticism, it is one of the only outside evaluations of HHS and stakeholder communication activities, and therefore some of its results are presented here.
The evaluation found that HHES provided consensus advice and recommen-
Hanford Health Information Network. Washington State Department of Health. 2004. Available at http://www.doh.wa.gov/hanford/.
dations to HHS agencies about a variety of issues, including communication issues (see Table 6A-2). Agencies often responded to the recommendations in writing and orally at the meetings (COSMOS 2001a, 2001b). The COSMOS evaluation indicated that subcommittee members surveyed strongly or generally agreed that ATSDR provided feedback on their recommendations, while NCEH and NIOSH were found to be slightly less likely to consider the advice of the subcommittee (COSMOS 2001a,b).
The COSMOS report indicated that some members of the HHES felt a lack of agency involvement in the HES process including the suggestion that “NIOSH and NCEH staff, in particular, could have been better represented at meetings.” Several subcommittee members and ATSDR staff noted, in particular, that NCEH staff did not always stay for the full meeting. They perceived this as a lack of interest and commitment to the advisory process” (COSMOS 2001a, 2001b).
Although public outreach was considered a primary function of the Hanford HES, the COSMOS survey findings noted that more than half of the HHES members perceived that resources for outreach and education were generally or very inadequate, and although ATSDR had recently worked with the subcommittee and its Outreach Work Group to develop a web page for the subcommittee, members still wanted to expand their outreach activities (COSMOS 2001a, 2001b). Funding was a significant factor limiting public health activities at the sites, and subcommittee members cited this as a major deterrent in implementing projects.
The COSMOS report cited a number of examples where the HHES made notable recommendations including recommending changes in the Hanford PHAs and the infant mortality study and trying to implement the Hanford Medical Monitoring Program. These served as examples of the subcommittees recommending “new research or public health activities that their members would like CDC or ATSDR to conduct” (COSMOS 2001a, 2001b).
In another example, ATSDR, using recommendations made by the subcommittee, conducted a single PHA for a number of areas of concern and revised the process for conducting a particular Hanford PHA. The agency noted that collaborative efforts with subcommittee members on the PHAs ultimately made the documents more readable and useful to the community in addition to addressing more community concerns (COSMOS 2001a, 2001b).
Hanford Advisory Board
While some individuals contacted by the committee about Hanford dissemination and communication activities seemed somewhat informed about various NIOSH activities, others who were or had been members of this DOE board did not recall much direct interaction with or information dissemination directly from HHS agencies.
Although not much information about HHS activities came from these indi-
viduals, this finding itself provides a perplexing picture of communication at Hanford. The fact that studies done by the three HHS agencies were not well known to individuals who sat on a major advisory board for Hanford is surprising to say the least. Indeed, why weren’t they on the NIOSH, NCEH, or ATSDR mailing lists? Providing information to these influential public opinion leaders should have been something that the HHS agencies went out of their way to do.
Media Coverage of HHS Activities at the Hanford Site
Another way to evaluate the effectiveness of HHS communication activities beyond very limited interviews with individuals and reliance on agency materials and their own interpretations of success is to review general media coverage of HHS activities. The committee conducted a limited search of news articles in the Lexis-Nexis database related to HHS activities at the Hanford site between 1990 and 2006. Many articles discussed the Energy Employees Occupational Illness Compensation Program and the HTDS. These are not included here because neither activity was conducted under the MOU.
Other activities covered by the news media included NIOSH’s worker studies; HEDR; ATSDR’s studies of infant mortality, heart, and autoimmune disease among people living near the Hanford site; ATSDR’s community outreach efforts including the HCHP; the HHIN; and the proposed Medical Monitoring Program. Some examples of the news coverage for each agency are discussed below.
NIOSH A majority of the news coverage of NIOSH’s work at the Hanford Site included discussion of the agency’s difficulty in obtaining data to support individual dose reconstruction for compensation purposes; NIOSH’s investigation of worker complaints related to exposure to vapors at the site; an investigation of potential hazards to workers during cleanup; and the NIOSH-sponsored Wing et al. study on multiple myeloma (Paulson 2000) (see also Chapter 2).
NCEH Many of the articles discussing NCEH’s work were related to the HTDS and HEDR. Comments in the articles noted the delay in release of the HEDR report; for example, “nearly three years and $10 million later, Hanford ‘downwinders’ and watchdog groups wonder if they’ll ever know how much radiation reached people living near the nuclear reservation” (Schumacher 1999). Many articles were written on the HTDS over the years, but that study does not fall under the MOU and is not covered in this report.
ATSDR A number of articles discussed ATSDR’s community outreach and education efforts, with particular emphasis on the HCHP. Providing much detail about the effort and what it would do, the following articles appeared in 2005:
An Associated Press article on August 18, 2005, related that doctors needed to focus on the mental health of downwinders and that there was a new video to instruct doctors across the nation about how to deal with the mental, as well as physical, ailments of downwinders. The story noted that ATSDR had produced the 30-minute video as a way to help the tens of thousands of people who grew up downwind of Hanford get proper medical care. The article also discussed potential exposure routes and the web site where more information could be found (Geranios 2005).
A March 23, 2005, article in the Oregonian related that ATSDR officials wanted to educate those who lived near the DOE site decades ago about possible health risks. It explained the HCHP and the information it provides on its web site, noting that DOE funding for the project would run out in the fall (Dworkin 2005).
A February 1, 2005, article in the Tri-City Herald said that the HCHP had launched what might be its final campaign to answer questions about health problems that may be related to living near Hanford and went into much detail about various aspects of the campaign and what it would do for downwinders (Cary 2005a).
ATSDR’s health studies were also mentioned in media reports. Examples included the agency’s study of heart and autoimmune disease in children exposed at the site and the infant mortality study. An article on January 17, 2005, in the Tri-City Herald discussed an ATSDR study of the rates of heart and autoimmune disease in children who were exposed to radiation from the Hanford site. The article noted the role of the HHES in the process: the HHES “which is no longer funded by the federal government, said those who lived downwind of the nuclear reservation feared they were experiencing other health problems because of exposure to radiation” (Cary 2005b).
The issue of medical monitoring at the Hanford site was also covered extensively by the news media. Many of the articles discussed ATSDR’s decision to initiate a monitoring program and the agency’s attempts to secure funding. There was a general sense that the community strongly supported the proposal for a monitoring program, and many articles reflected confusion and disappointment that the program was not ultimately funded by Congress.
Finally, a number of articles discussed agency requests for public input on the proposed public health agenda for DOE facilities. The agencies requested that comments be sent to ATSDR (Business and News Desks 1999).
Hanford Health Information Network Numerous articles criticized the budget cuts that eliminated the HHIN, a congressionally established regional outreach and information service for the Hanford community. The news articles cited the value of the network, because it was said to be the sole service provider of information about health effects related to exposures at or near the site. One
article noted the following: “HHIN Director, Chris Townley, said ‘After all these years of HHIN being good about the way they interact with downwinders, suddenly DOE decides to shut us down’” (Steele 2000).
THE OAK RIDGE COMMUNITY
In 1942, the Oak Ridge Reservation (ORR) was built in less than a year on isolated farmlands in the mountains of East Tennessee. Built by the U.S. Army Corps of Engineers, ORR was part of the Manhattan Project that within 3 years housed more than 75,000 residents (ATSDR 2004c). One of the country’s DOE sites, the ORR at its peak in the mid-1940s “demanded a workforce of 80,000.”15
The original goal of the work at Oak Ridge was to separate and produce uranium and plutonium for use in developing nuclear weapons. This work was carried out in three facilities, code-named Y-12, X-10 (later to become Oak Ridge National Laboratory), and K-25. K-25 was a gaseous diffusion plant designed to separate uranium-235 (U-235) from U-238. Y-12 was dedicated to the electromagnetic separation of U-235. X-10 was a demonstration plant producing plutonium from uranium by nuclear bombardment. Operational personnel in these three facilities during the 1940s totaled more than 35,000 people (ORNL 2002) (see Chapter 3).
During the 1950s and 1960s, Oak Ridge was an international center for the study of nuclear energy and related research in the physical and life sciences. The creation of DOE in the 1970s led to an expansion of the research program at Oak Ridge into areas of energy production, transmission, and conservation. Presently the facility has a broad science and technology mission that is very different from the days of the Manhattan Project.
Production at the Oak Ridge facility ceased in 1987. In 1996, reindustrialization of the area under the name East Tennessee Technology Park (ETTP) went into effect with efforts focusing on the restoration of the environment, decontamination and decommissioning of the facilities, and management of legacy wastes. Presently, Bechtel Jacobs Company, LLC, is the environmental management contractor for the DOE’s Oak Ridge Operations Office that is performing this cleanup work, with completion slated at ETTP for 2008. The goal is to create an industrial park known as Heritage Center under the coordination of the Community Reuse Organization of East Tennessee.
As part of the reindustrialization of this area, an incinerator was installed in what is now ETTP. The incinerator is an industrial operation that is used to destroy
See http://tennesseeencyclopedia.net/imagegallery.php?EntryID=100. Last accessed August 2006.
organic chemicals and reduce the volume of waste materials that contain low-level radioactive contamination. The incinerator operates under the Toxic Substances Control Act (TSCA), which governs how the incinerator operates and controls its releases. The TSCA incinerator began routine operations in 1991 and continues to operate today. Overall, it has treated more than 16,000 tons of hazardous and radioactive waste from ORR and other DOE facilities. Most of this waste is destroyed in the incinerator or collected as ash, and some by-products are vented into the air through the incinerator’s main smoke stack.
During the period covered by this health program review, total employment at the Oak Ridge facilities was about 21,000 in 1990 decreasing to 12,000 in 2004. The foregoing brief history of this facility points out the great changes in the type of operations that have occurred at Oak Ridge in its 60-year history. The significant hazards and risks to workers and the community associated with these various operations differ and were managed and communicated by DOE as the responsible party. In March 2002, DOE opened the Oak Ridge Information Center which consolidated the former DOE Public Reading Room and the Information Resource Center, and now provides a centralized resource center for public information about DOE archival and present operations at Oak Ridge.
An assessment of HHS communication activities at ORR is provided below.
Agency Communication Efforts
NIOSH, as part of OERP, carried out numerous studies of health effects among workers at the Oak Ridge Reservation. Some of these were multisite studies involving other DOE sites, while others were specific to ORR workers. A list of NIOSH studies that involved the Oak Ridge Reservation includes the 20 listed in Annex 2A.
Like other sites, NIOSH used one-page Brief Reports of Findings to communicate the purpose, activities, and findings of its studies to DOE workers. According to NIOSH, the information developed in these studies was widely and conveniently distributed through these mechanisms to individual workers and their management. General comments on the Brief Reports can be found earlier in this chapter.
The NCEH conducted the following health studies to evaluate reported illnesses afflicting residents in communities surrounding the ORR:
In 1983, NCEH (before the existence of the MOU between DOE and HHS) was involved with the Tennessee Department of Health and Environment
in a pilot survey in Oak Ridge in response to community concerns about mercury contamination in the East Fork Poplar Creek floodplain and the sewer line beltway.
In 1993, together with ATSDR and CDC, NCEH participated in the clinical evaluations of selected patients who had been referred to Dr. Howard Frumkin of the Emory University School of Public Health by their Oak Ridge physicians. Dr. Frumkin subsequently became the director of NCEH. These follow-up evaluations reported no evidence of any hazardous substance exposure.16
In 1998, NCEH was involved in a health investigation of the Scarboro Community based on a self-reporting health survey that indicated elevated rates of asthma and wheezing. No statistically significant association was found and no urgent health problems were identified.
Overall, it appears that NCEH’s role in health studies at ORR was relatively limited. It did not appear to have an independent communication program at Oak Ridge. The limited studies carried out at Oak Ridge, such as the agency’s study of asthma and respiratory illnesses in the Scarboro Community, were joint studies reported to the community through ATSDR at a meeting with the community and as part of the Public Health Assessment on Y-12 uranium releases.17 The contribution of NCEH is noted in the brief.
ATSDR iniated a number of PHAs with DOE funding.
Public Health Assessments ATSDR began its public health activities at ORR in 1992. Initially, the agency’s effort focused on Superfund cleanup activities at the East Fork Poplar Creek and the Watts Bar reservoir. ATSDR began work on the PHA process in 2000 when results of the Oak Ridge Health Studies were available and the Oak Ridge Reservation HES (ORRHES) had been established to provide a forum for community interaction. The ORRHES is discussed in more detail below.
ATSDR uses the PHA process to evaluate previous studies and environmental data to determine whether releases of hazardous substances from the ORR could have affected the health of people in communities near the reservation.
Health concerns and issues were collected and documented in the 1990s by ATSDR health scientists during ATSDR’s site visits, stakeholder meetings, calls to ATSDR, and public meetings conducted by other agencies in Oak Ridge and surrounding communities.
See http://www.atsdr.cdc.gov/hac/oakridge/phact/cdc.html. Last accessed August 2006.
See http://www.atsdr.cdc.gov/HAC/PHA/oakridgey12/oak_p1.html#backf. Last accessed August 2006.
The major public health issues and concerns during the 1990s included the following:
A local physician’s report that he believed approximately 60 of his patients had experienced occupational and environmental exposures to several heavy metals that resulted in increased cancer, immunosuppression, and autoimmune disease;
Exposure to mercury and other hazardous substances released from the Y-12 Plant into the Lower East Fork Poplar Creek;
DOE’s proposed cleanup level for inorganic mercury in the Lower East Fork Poplar Creek floodplain soil;
Exposure to chemical and radiological substances released from the three ORR complexes (Y-12 Plant [currently known as Y-12 National Security Complex], X-10 [currently known as the Oak Ridge National Laboratory], and K-25 [currently known as the East Tennessee Technology Park] into the Watts Bar Reservoir;
Exposure to polychlorinated biphenyls (PCBs) via ingestion of Watts Bar Reservoir fish and turtles;
Exposure to hazardous substances in the Scarboro Community and the validity of measurements taken at the off-site air monitoring station 46 (located in the Scarboro Community) and external radiation results collected during past aerial surveys;
An unusual number of children affected by chronic respiratory illness in the Scarboro Community;
Residents’ reports of numerous cases of amyotrophic lateral sclerosis and multiple sclerosis in the community;
ETTP employees’ concerns about possible exposure to cyanide;
Exposure to hazardous substances released from the TSCA incinerator at ETTP;
Sick workers at ETTP and sick residents in the vicinity of the facility who believed that their illness was caused by releases from the facility;
Dissatisfaction of many of the workers and members of the public with the availability, quality, and extent of medical care in Oak Ridge—they wanted an independent clinic to provide care and conduct research; and
Need for an ongoing public health forum to address outstanding public health issues.
According to ATSDR reports, from 2000 to 2005 ATSDR health scientists collected and documented health concerns and issues in the ATSDR Community Health Concerns Database for the ORR. This database allowed ATSDR to record, track, and address community concerns obtained from written correspondence, phone calls, newspapers, concern comment sheets, and comments made at public meetings.
ATSDR scientists are conducting PHAs on the following releases: Y-12
releases of uranium, Y-12 releases of mercury, X-10 release of iodine-131, X-10 release of radionuclides from White Oak Creek, K-25 releases of uranium and fluoride, and PCBs released from all three facilities. PHAs will also be conducted on other issues of concern, such as the TSCA incinerator and off-site groundwater. ATSDR is also screening current (1990 to 2003) environmental data to determine whether additional chemicals will require further evaluation.
In general, ATSDR communication activities at Oak Ridge were similar to those described for the Hanford site. However, unlike the Hanford site, there was no equivalent of the apparently successful HCHP. At Oak Ridge the primary community contact from ATSDR was through the ORRHES.
Educational Efforts for Public Health Care Providers and the Community ATSDR published a wide range of instructional health materials for the Oak Ridge community and held periodic public presentations on some of the same topics. Some of the tutorial materials were of a general nature, for example, regarding ionizing radiation and its hazards, while others were specific such as uranium release from the Y-12 facility and its implications. In reviewing samples of these materials, they seemed short on content but emphasized the communication process and how to communicate with ATSDR. For example, in one four-page fact sheet on the Y-12 uranium release, more than half of the document is devoted to describing ATSDR and what it does, rather than details of the uranium release. A second brochure on this same subject, which was six pages in length, had a better proportion of content to agency information. Such materials appear to emphasize the presence of the government agency rather than provide useful health information.
ATSDR also published a series of publications entitled “ORRHES Brief” on a variety of topics such as mercury exposure investigation, Scarboro environmental study, uranium releases from ORR, dose reconstruction feasibility study, and others. These are 6- to 10-page reports that have useful, understandable information based on PHAs prepared and published by ATSDR. These are well done and understandable. However, it is not clear what impact the reports had on or the breadth of readership they received in the community.
Stakeholder Input—Citizens Committees at Oak Ridge The ORRHES, chartered in 2000 by ATSDR, was not the first committee at Oak Ridge to involve stakeholders. Various “public” activities developed during the period of time that HHS was working with DOE on health activities at the site. It appears that many of the committees began their activities shortly after the signing of the first MOU between DOE and HHS in 1990. These initiatives may have resulted from the criticism of the DOE program prior to 1990 or been stimulated by the signing of the MOU. Several of these committees were focused on the public health of the community, while others were focused primarily on the environment. Each appeared to have a community outreach responsibility.
Oak Ridge Reservation Health Agreement Steering Panel (ORRHASP). In 1991, DOE and the State of Tennessee, through the Tennessee Department of Environment and Conservation, entered into the Tennessee Oversight Agreement (TOA), which included a number of environmental regulatory oversight functions. The oversight agreement also established a DOE funding source that allowed the Tennessee Department of Health (TDH) to undertake a two-phase research project aimed at determining whether environmental pollutant releases from ORR created public health problems. ORRHASP existed from early 1992 until December 1999 when it issued its final report. It had two primary responsibilities to TDH: (1) to perform technical oversight of work conducted by contractors, and (2) to provide some reflection of community opinion to guide project activities. Ten contractor reports about the health effects of effluents from ORR resulted from this health agreement. All were peer-reviewed. The Steering Panel published its final report in December 1999 (Oak Ridge Health Agreement Steering Panel 1999). In its 8-year existence, this committee held 48 meetings, all of which were open to the public and some were specifically designated to focus on public input. The health reports covered many of the same topics that were covered by ATSDR in its PHAs.
Oak Ridge Reservation Site-Specific Advisory Board (ORRSSAB). The first steps toward development of an SSAB began in May 1993 under the auspices of DOE. A local stakeholder group was formed to discuss environmental restoration and waste management issues. Six months later, the 45 members formed a steering committee to outline a proposal regarding establishment of an SSAB in Oak Ridge. While this board did not have specific health activities as part of its charter, it had a very active community interface. The board continues to meet monthly, and its proceedings are posted on a web site.18
Oak Ridge Reservation Local Oversight Committee (ORRLOC). This group was created in 1991 to represent those counties and communities affected most directly by DOE’s activities at Oak Ridge. The ORRLOC is funded by a grant from the Tennessee Department of Environment and Conservation’s DOE Oversight Division, which is in turn funded by DOE under the terms of the TOA. Members of this committee are government officials of the affected towns and counties surrounding the ORR.
ORRHES. ORRHES was created to provide a forum for communication and collaboration between citizens and the agencies that are evaluating public health issues and conducting public health activities at ORR. The subcommittee was formed in 1999 by ATSDR under the guidelines and rules of FACA. Members of ORRHES:
Serve as a citizen advisory group to CDC and ATSDR and provide rec-
See http://www.oakridge.doe.gov/em/ssab/minutes.htm. Last accessed August 2006.
ommendations on matters related to public health activities and research at ORR;
Provide an opportunity for citizens to collaborate with agency staff members and learn more about the PHA process and other public health activities; and
Help prioritize public health issues and community concerns to be evaluated by ATSDR.
This is the only citizens committee at Oak Ridge that was formed under the auspices of the MOUs signed between DOE and HHS. Members from the community were nominated through a community-based process and finally selected jointly by NCEH and ATSDR administrators. The committee’s charge was to provide public health advice and recommendations to help steer the research that will be carried out by ATSDR in support of concerns from the Oak Ridge area, both for workers and the community. From 1999 to the end of 2005, this committee met 28 times.
The ORRHES also established a Communications and Outreach Work Group (COWG) whose purpose was: “(1) to encourage and facilitate communications among the Oak Ridge Reservation Health Effects Subcommittee (ORRHES) members; community members living in areas potentially impacted by releases from the Dept. of Energy (DOE) sites in Oak Ridge; the Centers for Disease Control (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR); and federal, state, and local agencies; and (2) to maximize public participation and involvement in CDC and ATSDR public health activities in the communities surrounding the Oak Ridge Reservation” (ATSDR/NCEH 2006). At a meeting on March 20, 2001, ORRHES approved an initial communications strategy developed by COWG. The strategy included the following components: publishing a Federal Register notice prior to meetings; placing advertisements in area newspapers; announcing the meeting via press releases to the media; issuing a press released to describe the agenda of a work group meeting; announcing the ORRHES meetings in the DOE Public Involvement Newsletter and developing other channels to inform the public; issuing a press release after the meetings; preparing a newsletter following the meetings; and placing announcements on the ORRHES web site (ATSDR/NCEH 2006).
The ORRHES apparently ceased operations in January 2006 when funding reductions resulted in a cutback of continuing programs at Oak Ridge and closure of the ATSDR office there. The ATSDR web site for Oak Ridge19 gives the impression that ATSDR continues to support the Oak Ridge community, although the calendar of events does not go beyond 2005 and all but one contact is listed at CDC in Atlanta.
The actions of ORRHES included reviews of ATSDR-funded extramural
See http://www.atsdr.cdc.gov/HAC/oakridge/. Last accessed August 2006.
studies prepared for ORR. In undated minutes supplied to the committee by ATSDR, a 1994 externally published paper by Mangano (1994) was rejected and a resolution was passed “to ignore this paper as scientifically inaccurate in its conclusions which they claim could not be arrived at from the data presented in the paper.”
A more recent, extensive study entitled Assessing the Health Education Needs of Residents in the Area of Oak Ridge Reservation, Tennessee (Parkin et al. 2003) was rejected in ORRHES minutes dated August 8, 2003. Yet this study appears in a PHA for ORR, dated January 20, 2004, which notes that this “needs assessment will help planning, implementing and evaluating the health education for this site.” This report received negative reviews by several reviewers and by the Needs Assessment Working Group of ORRHES, which stated that “the collected comments reveal serious deficiencies in the report and generally reject the report as a further basis for any Public Health Education Program (PHEP), be it therefore recommended that the subject report not be used as the basis for any future health education program conducted in the ORR region.”20 A discussion with the executive director of the agency that funded this study with ATSDR monies indicated that the timing and management of the study were not ideal. Field work was encumbered by bureaucratic processes, and the population that was being studied had been “over-sampled” so responses to inquiries for input and participation were low, resulting in a report based on a small sampling of people.
These two incidents raise questions about the effectiveness of communication and coordination of ATSDR’s extramural studies including one that was based on community input.
Newspaper Coverage and Other Communication Programs at Oak Ridge The committee reviewed local newspaper coverage of health-related concerns and activities from 1998 until recently through local and statewide newspapers such as the Oak Ridger (local), the Knoxville News Sentinel, and the Tennessean (statewide, published in Nashville). NIOSH Brief Reports did not appear to receive coverage in the local newspaper. Broader studies of the type carried out by NIOSH received some coverage in detailed articles on the broad health issues such as those covered in the Tennessean. ATSDR announcements of activities, meetings, and closures appeared in the newspaper reports, along with editorial articles about controversial ATSDR issues such as the Oak Ridge Environmental Peace Alliance (OREPA) challenge (Rogers 2005a) of the draft PHA on White Oak Creek radionuclide releases. This draft PHA was also criticized by Owen Hoffman, president of Specialists in Energy, Nuclear and Environmental Studies
as being “misleading, technically deficient and inappropriate” (Rogers 2005b). Another issue discussed in the local press was ATSDR’s report on health risks associated with exposure to low-level radiation, which was disputed by the ORRLOC group as being “deeply distressed” over conclusions drawn in a study for ATSDR by investigators from Massachusetts-based Clark University (Rogers 2005c).
The decision by the U.S. Senate Appropriations Subcommittee on Energy and Water Appropriations to eliminate ATSDR’s budget for activities at DOE facilities for FY 2006 brought forth further debate about the value of these activities in the local press (Rogers 2005d). ORRLOC advisory committee member Al Brooks, in a letter to local government representatives, called the decision “a serious reduction” that would leave Oak Ridge without assurance that its city is a safe place to live and work, a position supported by the advisory committee as a whole. On the other side, Janet Michel, Coalition for a Healthy Environment secretary, stated that “ATSDR has squandered far too much money on endless meetings of the ORRHES—a group the agency manipulates to its own benefit and whose recommendations they are free to ignore. I have found that ATSDR’s PHAs are leaving much to be desired. ATSDR scientists are not following their own guidance documents on cancer risk for radiation exposure” (Michel 2005).
Independent of HHS health communication activities, DOE itself established mechanisms to provide the community with information regarding operations in Oak Ridge. Initially, there was a DOE Public Reading Room and a DOE Information Resource Center. In 2003, these were combined into the DOE Oak Ridge Office Information Center “One Stop Shop,” which is staffed by a contractor to DOE and serves as an information resource to the community. This center does not contain health information on employees and advises that such concerns be investigated through the Department of Labor’s Energy Employees Compensation Resource Center.
THE LOS ALAMOS COMMUNITY
The Los Alamos Laboratory (LANL), or Project Y, came into existence in early 1943 for a single purpose: to design and build an atomic bomb (see also Chapter 3). Sited in northern New Mexico and owned by DOE, LANL has been managed by the University of California since 1943, when the laboratory was born as part of the Manhattan Project. During subsequent years, the mission of the 28,000-acre site changed and expanded to include thermonuclear weapons design, high-explosives and ordnance development and testing, weapons safety, nuclear reactor research, waste disposal or incineration, chemistry, criticality experimentation, tritium handling, biophysics, and radiobiology.21 Its current
Los Alamos Historical Document Retrieval and Assessment Project. 2006. Available at http://www.lahdra.org/.
research efforts focus on national security, environmental quality, and energy resources (ATSDR 2005c). The LANL workforce in 2003 was estimated to include 7,500 University of California employees and over 3,000 contractors (ATSDR 2005c). LANL is now managed by a consortium of University of California system and three private companies.
Nuclear weapons production at the LANL site left an environmental legacy, including contamination of the air, water, and soil through releases of radioactive materials and chemicals during production (ATSDR 2005c). The releases occurred through a variety of activities including “direct discharge of liquid wastes to canyons, burial of solid wastes, direct release of air emissions to the atmosphere, and accidental spills” (ATSDR 2005c). Significant quantities of plutonium, uranium, and a wide variety of other toxic substances were processed and released to the environment in quantities that are not well known. The contamination of the site was of particular concern to workers and the surrounding community. ATSDR noted that citizens living near the site expressed concern about elevated cancer rates possibly linked to exposures at the site; other non-cancer health issues related to potential exposures including thyroid disease, allergies, asthma, and congenital anomalies; tribal exposures; and potential contamination of food and drinking water (ATSDR 2005c). NIOSH, NCEH, and ATSDR have worked in different capacities to examine the effects of these releases at the site on human health, particularly among former and current workers and in surrounding communities.
Agency Communication Efforts
An assessment of HHS communication activities at LANL is provided below.
As discussed previously, NIOSH produced one-page Brief Reports of Findings to communicate study results to workers and the community. Two multisite studies involved LANL. These were the study on ”Mortality Among Female Nuclear Weapons Workers” by Gregg S. Wilkinson (Wilkinson 2000), and “The Impact of Downsizing and Reorganization on Employee Health and Well-Being at the DOE LANL Facility” by Lewis D. Pepper (Pepper 2000).
In 1999, NCEH initiated the Los Alamos Historical Document Retrieval and Assessment Project to systematically review and evaluate documents related to site operations for information about releases of contaminants from 1943 to the present (Shonka et al. 2006). The LAHDRA project team was established to investigate materials used throughout LANL’s history of operations to identify
and prioritize releases in terms of their apparent relative importance from the standpoint of potential off-site health effects. Based on the project’s findings, NCEH will work with stakeholders to determine if more detailed assessments of past releases are warranted. Should additional investigations be warranted, they might be in the form of screening-level evaluations, or they could progress to detailed dose reconstruction for the releases of highest priority.22 In January 2006, an interim report of the LAHDRA Project V4 was updated and is available on the project’s web site.23 (See Chapter 4 for more information about the document retrieval project at LANL.)
According to the LAHDRA project, its “comprehensive study of LANL records is providing useful information to CDC [NCEH] and others who are interested in LANL releases and potential public health effects. Possessing the security clearances and ‘need to know’ associated with this study, the project will bring about public release of relevant documents that, until now, have been kept from public view simply because no one had authorization to locate them and request that they be reviewed for public release.” Documents declassified and released from LANL that the project team considers to contain useful information regarding off-site releases are available to the public at the University of New Mexico and at various libraries. These documents are summarized in a searchable database, which also will be available in the reading rooms.24
The LAHDRA web site notes that public outreach has been an important part of the project, including ongoing solicitation of public input and active outreach efforts in public education. The goal of the public outreach program is to present a complete and accurate picture of past operations and releases. The project’s Web page and public meetings solicit the public’s participation and input. The public is informed about the project’s purpose, methods, and progress through publication and distribution of newsletters and fact sheets. The project’s responsiveness to the public’s input about and awareness of project activities is continuously evaluated and will be summarized at conclusion of the project. The LAHDRA project team hosted 13 public meetings from 1999 to 2005 and members have given additional presentations to organizations, communities, tribes, and pueblos throughout northern New Mexico.25
ATSDR has conducted a number of communication and outreach activities at Los Alamos. These include PHAs and educational efforts geared toward edu-
cating the surrounding community as well as health professionals about potentially relevant exposures at the site.
Public Health Assessments In 2005, ATSDR released a PHA for LANL for public comment. The PHA evaluated monitoring data from the site from 1980 to 2001 to assess possible exposures to chemical contaminants and radionuclides in a variety of environmental media. In preparing the document, ATSDR “collected relevant health data, environmental data, and community health concerns from the Environmental Protection Agency, state and local health and environmental agencies, the community, and potentially responsible parties, where appropriate.” According to ATSDR, the document represents the agency’s best efforts, based on currently available information, to fulfill the statutory criteria set out in CERCLA section 104 (i)(6) within a limited time frame.
To assess community health concerns for the PHA, in 1994, Boston University conducted a survey to identify the public health concerns of the community surrounding LANL under an ATSDR grant. Initially, surveys were mailed to 71 citizens and organizations on an NCEH contact list. Follow-up telephone interviews were conducted and additional community concerns were collected more informally. Distinct communities within the areas surrounding LANL were identified, each with unique concerns about LANL’s operations.
Among the community concerns expressed were the following:
Elevated cancer rates;
Non-cancer health impacts, including thyroid disease, allergies, genetic effects or reproductive outcomes, asthma at pueblos, and rheumatism;
Health impacts of LANL releases on tribal nations including questions based on exposures through unique tribal practices, such as the use of surface water from streams for ceremonies and irrigation, as well as impacts on sacred areas; and
Long-term health impacts of earlier accidental releases.
The PHA evaluation concluded that “no harmful exposures are occurring or are expected to occur in the future because of chemical or radioactive contamination detected in groundwater, surface soil, surface water and sediment, air or biota” (ATSDR 2005b). More information about the scientific aspects of this PHA can be found in Chapter 3.
As mentioned previously, the PHAs are released to the public for a 45-day public comment period, after which the agency typically addresses these comments in a revised PHA (see discussion of Oak Ridge PHA and Hanford PHA). The committee reviewed the PHA for LANL that was released for public comment on April 26, 2005.
Educational Efforts to Health Care Providers and the Community ATSDR conducted a number of health education programs in the communities surrounding LANL. The agency partnered with the Association of Occupational and Environmental Clinics and the University of New Mexico through a cooperative agreement to develop and implement health education materials and promotional activities related to community and health professional environmental education for communities living near Los Alamos (ATSDR 2006b).
It was also involved in funding educational projects through the National Alliance for Hispanic Health (NAHH) “to increase knowledge about Hispanic children’s exposure to hazardous substances” (ATSDR 2006b). Through this funding, the National Hispanic Environmental Health Education Network was developed to “increase knowledge about Hispanic children’s exposure to toxic substances among health and human service professionals within the Alliance’s network and to build the capacity of community-based organizations to develop and implement culturally proficient environmental education programs for Hispanic families” (ATSDR 2006b). Fact sheets, developed in English and Spanish and posted on the NAHH web site, have been developed on a variety of environmental health issues including smoking and radon exposure. ATSDR notes that the NAHH also worked closely with Youth Development, Inc. in developing community education programs related to potential exposures to contaminants of concern at LANL. This included developing three environmental health modules and training nearly 90 people in 2003.
Stakeholder Input: Citizens Advisory Board
The Northern New Mexico Citizens’ Advisory Board (NNMCAB) is the site-specific community advisory group chartered under FACA in 1997 to provide citizen input to the DOE on issues of environmental remediation and cleanup, waste management, monitoring and surveillance, and long-term stewardship at LANL. For Los Alamos, ATSDR also has been working through this DOE site-specific advisory board.
According to its web site, the NNMCAB is “dedicated to increasing public involvement, awareness and education relating to environmental remediation and management activities at LANL.” It strives to ensure that decisions about LANL include informed advice from the community, and it openly solicits public participation in all deliberations. The NNMCAB committee’s goal is to make it easier for members of the public to make their voices heard by DOE decision makers, emphasizing the continuing need for intensive public information and involvement efforts by LANL and DOE.26
The NNMCAB stresses that such public information and involvement events
See http://www.nnmcab.org/. Last accessed August 2006.
should be well organized and well managed so that the information presented is comprehensible to the intended audience and the public has ample opportunity to interact with the presenters. According to its Community Involvement Committee (CIC), which existed through 2005, the public requires understandable and usable information about environmental remediation and waste management at LANL.27
In 2005 the CIC made two major recommendations to DOE approved by the parent board to improve public interaction and comprehension of the information. The first was a series of recommendations for meetings aimed primarily at conveying information to the public (Recommendation 2005-4), and the second noted that the executive summaries of some specific DOE reports on environmental surveillance at Los Alamos “did not adequately summarize the key points and conclusions in a way that would be understandable to the general public” (July 27, Recommendation 2002-05). Although both of these recommendations are for DOE because this body advises that agency, many of its comments also could be applied to efforts reviewed by this committee for HHS agencies at other DOE sites.
In 2006, the duties of the CIC were transferred to the NNMCAB staff to be more effective and to help incorporate communication concerns into the efforts of two technical subcommittees of this group (L. Novak, NNMCAB, Santa Fe, NM, personal communication, July 27, 2006).
Media Coverage of HHS Activities at the Los Alamos Site
The committee conducted a limited search of news articles related to HHS activities at Los Alamos between 1990 and 2006. Many articles discussed the Energy Employees Occupational Illness Compensation Program, but as mentioned previously, this program is not included under the MOU and is not discussed here. Other activities covered by the news media included the difficulty that researchers had in obtaining data from the LANL for use in health studies; ATSDR’s PHA; and LAHDRA.
An early article in the Santa Fe New Mexican in 1996 described difficulties encountered by NIOSH in obtaining data from LANL for use in health studies. It noted that “Los Alamos National Laboratory has dragged its feet in making information available to outside researchers studying cancer rates in federal DOE workers, federal and academic health researchers say.” According to the article,
NNMCAB Recommendation to DOE No. 2005-04, “Improvements to DOE/LANL Public Meetings,” 2005. Available at http://www.nnmcab.org/recommendations/recommendation-2005-04.pdr.
“the researchers said that in the cases where they have been able to get their hands on records, the information has been spotty and difficult to interpret” (Easthouse 1996).
Another article in 2004 showed that the situation had not changed very much. It discussed NIOSH’s difficulty in obtaining data to estimate exposure for compensation claims: “The National Institute for Occupational Safety and Health says it is having a hard time getting data on the amount of radiation to which Cold War-era nuclear weapons plant workers may have been exposed” (Zuckerbrod 2004).
The LAHDRA project was also the subject of many articles. Some issues discussed included the release of an interim report that provided information about the status of the LAHDRA project, difficulties in obtaining needed records from the laboratory, and the delay in completing the project. One article noted, “Begun in 1999, the project is taking much longer than anticipated” (Rankin 2004). Another noted that “work on the project has at times been slowed down because the CDC and the lab have disagreed over access to various documents. The CDC at one point threatened to terminate work altogether after the current $4.2 million contract ran its course this year” (Associated Press 2004).
A few articles in 2005 discussed the release of the PHA for the site. One article discussed the findings of the PHA and provided details about how the public could submit comments. One article noted criticisms of the PHA: “At least one LANL environmental watchdog group, however, isn’t buying the conclusions and is concerned the study’s authors didn’t seek input from any sources beyond LANL and the federal Department of Energy” (Rankin 2005).
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