ORRHES Meeting Minutes
November 16-17, 2000
Table of Contents
NOVEMBER 16, 2000
Presentation on the FACA
Overview of the Subcommittee Charter
Ethics Video and Discussion
Letter from NIOSH to the ORRHES
Overview Presentation of ATSDR
Scope of the Subcommittee
Presentation of the Public Health Assessment Process
NOVEMBER 17, 2000
Presentation of ATSDR Needs
ORRHES Guidance Document Presentation/Discussion
Continuation of Process Guideline Discussion
Discussion of Work Groups
Committee Planning Discussion
The first meeting of the Oak Ridge Reservation Health Effects Subcommittee (ORRHES) was held on November 16-17, 2000 under the auspices of the Agency for Toxic Substances and Disease Registry (ATSDR) and the Centers for Disease Control and Prevention (CDC). All but two members were present, plus all three state agency liaisons and several members of the public.
The members were thanked for their willingness to serve on this Subcommittee, which is a key component of ATSDR's outreach to the Oak Ridge community. It will provide advice and recommendations to ATSDR and CDC, particularly in prioritizing and determining how to evaluate health issues and community concerns, and to determine the public health responsibilities suggested. That advice will be taken seriously and responded to.
After the members and liaisons introduced themselves, committee education began. Presentations were heard and a video was presented on the Federal Advisory Committee Act (FACA), under which the ORRHES was chartered. The FACA was created to prevent advisory committees from being dominated by any one viewpoint or special interest. It is the only way that consensus advice can be provided to an agency, which must respond to the advice and recommendations. The basic FACA procedural guidelines were explained pertaining to the committee function, meetings, membership, Designated Federal Official (DFO), Chair, quorum (50% + 1), Member compensation, conflict of interest regulations and standards of ethical conduct. An overview of the Subcommittee's charter was also provided. It can have up to 30 members; 20 of whom are currently seated. They have overlapping 4-year terms and serve until replaced.
Agency presentations began with a letter read from National Institute for Occupational Safety and Health (NIOSH). It requested time on the second meeting's agenda to outline NIOSH's mission and research agenda at Oak Ridge, and its role in the Energy Employees' Occupational Illness Compensation Program. An overview of ATSDR's general mission was provided (to conduct public health assessments, establish and maintain toxicological databases, disseminate information on exposures, and provide medical education to health care providers on the health effects of environmental contamination). The Subcommittee's discussion questioned what interactions among chemicals ATSDR is exploring; why Oak Ridge was not yet assessed as a Superfund site, the area selection method for siting an environmental health clinic; whether ATSDR an use classified information; the relative danger of exposures to community versus workers; ATSDR's ability to examine cumulative impacts from low background originating from other than the ORNL; how a public health assessment is conducted; and how chemicals not listed or profiled are addressed.
Public comment was solicited several times in the meeting. Responders included a member of the former committee, the Oak Ridge Health Agreement Steering Panel (ORHASP), who described that work, and several former and present ORNL workers. The latter described their work and its then-unknown hazards. They: 1) asked how to find out what and how much they might have been exposed to; 2) hoped the ORRHES would help facilitate closure of the debate about health effects in Scarboro to reduce the community's anxiety, and to try to ensure that future studies do as little harm as possible.
The members noted that these speakers were both residents and workers, involving double exposures; and that beyond an understandable, well-done report, closure also involves the community's belief and confidence in the work done.
The scope of the Subcommittee was presented by the agency and discussed. In the ensuing discussion, the members asked the ORRHES' relationship to the other agencies formerly on the Public Health Work Group; requested a listing of the recommendations made over time by the other Subcommittees, and the response to them; that recommendations pertaining to another agency be forwarded and that NIOSH have a liaison member; that a comprehensive survey of the ORNL community (asking if people are concerned about their health) useful for multiple research purposes should have been done; noted great community distrust of DoE and its contractors' data; suggested review of a 1994 survey of the 8-county area, the report of which cited about 3400 concerns; recommended that the ORRHES member appointment process be clearly conveyed to the community (which may hear that the "wrong people" were appointed); how to reach consensus; that emotions as well as numbers have to be dealt with, among the community and directed to both the scientists and perhaps the Subcommittee members as well. Expectations should not be raised and science's lack of all the answers must be acknowledged.
A presentation of the Public Health Assessment (PHA) process was provided. It will analyze and evaluate the information, data, and findings from previous studies and investigations on the radiological and chemical contaminants released from the Oak Ridge Reservation. With the Subcommittee, it will be decided what can be used in the public health assessment. The primary sources of information for the PHA were described (environmental and health data and expressed community concerns). The subsequent discussion noted that 1) how the Tennessee Cancer Registry data could be used; asked for examples of follow-up actions to PHAs done; how the ORRHES will relate to the PHA's development. Other significant questions asked were what to tell those members of the community who don't want any more surveys/research, but practical help, if ATSDR offers no medical treatment; whether the viewpoint of community members who do not want any more studies, but just care, was represented on the Subcommittee (yes); what the Subcommittee can conclude when disease causation is probably not provable, but only an association. It was concluded that the Subcommittee's must be made very clear, and caution exercised to avoid raising expectations, while at the same time doing everything possible to refer people with needs that the ORRHES cannot meet to appropriate sources. The degree to which this Subcommittee can clarify the causes of risk and perhaps health outcomes also will help the community, or it will be seen as just another committee that said it would help and didn't.
A presentation of ATSDR's needs assessment was provided, which gauges the concerns, strengths, and resources in a community. Its steps were described. Knowledge (about subjects related to the site, such as about science or disease), 2) attitudes (that influence message delivery: trusting, suspicious, or overwhelmed by the situation), and 3) behaviors (that contribute to healthy or unhealthy lifestyles, such as children eating dirt) are explored, as are the community, social, and local political structures, accessibility and adequacy to health care, opinions of the local media, local social services available, and identification of key community leaders. ATSDR's specific plans for the Oak Ridge needs assessment were outlined. It will be done under a cooperative agreement with the Association of Occupational and Environmental Clinics. They have engaged George Washington University (GWU) to conduct the needs assessment. Their researchers will come to Oak Ridge to discuss their assessment plans with this Subcommittee. GWU's capabilities were praised by one committee member.
The Subcommittee's discussion addressed how ATSDR would reach everyone on this diverse community; what the agency/Subcommittee's response would be if a non-ORNL (i.e., industrial) entity was found to be a polluter; how long the assessment would take; ATSDR was requested to provide a completed needs assessment as an example; why ORISE would not be doing the Oak Ridge work; whether the needs assessment would address of the community's perceptions and fears; a suggestion was offered to use the same community as the SSAB; and an expectation expressed that the public would continue to be divided in opinion.
The ORRHES guidance document was presented in detail and discussed. A living document of five sections, Sections 1-3 provide the purpose and history of the Subcommittee, its organizational structure and roles, and provides process guidelines. ORRHES members provided input in writing prior to the meeting, and during the review, on 1) the described Subcommittee organization (specifically, the components of the organizational flow chart); 2) work groups (the manner of community members participation – the importance of recognizing the people who work on a work group was stressed); 3) process guidelines (requiring a simple or super majority for a vote to pass);
In public comment, it was asked when the local people get the benefit of this committee, or would it produce more papers for the Reading Room? The destination of all this work must be defined, to indicate why the public should contribute; otherwise, the unions, at least, would not help. One disabled person related her decision not to participate on this committee because she would lose her disability benefits. She stressed that the citizens must be able to provide input and impact to the work group meetings. While she had little hope for gains from this board, she challenged it to get something positive done to give the community a product useful to help the public's health. Another speaker stated that the assessments and studies had already been done, and the community can say by whom, of what, and where. He wished this committee would move to validate what is already known, because the community does not need 9 more years of being told what they already know. But another speaker testified to the independence of at least a few members of this committee and thought that a big step forward in Oak Ridge's process.
The process guideline discussion continued. There was much discussion of enlisting the participation of an sick worker (and concern expressed that this would not be seen as a derogatory term). The wish was expressed to get whatever waivers are necessary, to allow such a person to be paid to participate without the risk of losing their benefits. However, this is outside of ATSDR's control and the Subcommittee's mandate. Since there is an outstanding invitation to participate to someone who self identified as a "sick worker," and since some members were selected because the ORHASP findings indicated them to be at high risk, the Subcommittee's patience until the next meeting to address this membership gap was requested. First, an interested person must be identified, and time is needed until the pending invitation is answered. A Subcommittee letter to request that person's participation was suggested by one member, to be forwarded through ATSDR since that agency cannot reveal his/her name. Another member wondered if the disabilities-benefits problem could be resolved by enlisting community members who were adversely affected just by living here.
After a brief presentation on the work groups formed by the other subcommittees, it was agreed to form three ORRHES work groups to address Guidelines and Procedures, the Program of Work and Agenda, and Communications and Outreach. The activity of the first was expected to be sporadic after an initial intense focus, and the second and third to be ongoing.
Committee planning included an ATSDR announcement that a permanent ATSDR storefront office would be open by January, to operate during normal business hours, five days a week. Alternate meeting sites than the YMCA were suggested. Eight action items were summarized, as were the next meeting's potential agenda items. The Chair agreed to appoint the Work Group Chairs shortly, to allow them to begin work. The members tentatively agreed to meet on January 18-19, 2001.
The closing comments of the members to summarize their perception of the meeting were generally very positive, although the challenges were often acknowledged and some ambivalence was expressed. The critical importance of how to address the issues raised in the public comment periods was discussed, and the need for a process to ensure that feedback occurs.
Motions passed during the November 2000 meeting:
- The Procedures Work Group, when appointed by the Chair, consider the Draft Operational Guidelines and the comments received, and recommend on them to the full Subcommittee.
- Standing work groups will be appointed by the Chair: 1) a Guidelines and Procedures Work Group; 2) a Program of Work and Agenda work group; and 3) a Communications and Outreach Work Group; and that 4) other ad hoc work groups be appointed as needed.
Action Items Created at the November, 2000 Meeting:
- ATSDR will provide a copy of the summary of the Oak Ridge Health Assessment Study Panel.
- CDC and ATSDR will provide a listing of the recommendations made over time by the other Subcommittees, and what happened in response.
- ATSDR will provide a completed needs assessment to the committee as an example.
- Committee Management and CDC's Office of General Counsel will explore the regulations and procedures of what Subcommittee work groups can and cannot do. Mr. Pereira will advise the Subcommittee within 30 days of the formal procedures found, if any.
- ATSDR will try to provide copies of the independent investigation of the East Tennessee Technology Park study report provided by Norman Mulbennet (two bound volumes).
- A PCB toxicological profile will be provided for Dr. Eklund and Mr. Akin.
- Dr. Brooks will meeting with Ms. Bush on a compendium
of Oak Ridge-related data.
Department of Health and Human Services
Agency for Toxic Substances and Disease Registry