The Ramazzini Institute
for Occupational and Environmental Health Research   

Who Are We?

     The Beryllium Medical Surveillance Program conducted by Oak Ridge Associated Universities for the U.S. Department of Energy [DOE] was initiated a decade ago. At the time, the Workplace Health Fund of the Industrial Union Department, AFL-CIO, through a jointly-funded cooperative arrangement, provided consultative services in the development of educational materials, worker liaison, and program evaluation. Mrs. Elizabeth Averill Samara, RN, MSN, was Program Coordinator.
     An independent scientific oversight committee was chaired by Dr. Kenneth Rosenman, Michigan State University Department of Medicine. This committee of experts was jointly nominated by the Workplace Health Fund and Oak Ridge Associated Universities.
     Funding over the course of the project initially were provided by DOE and the Metal Trades and Industrial Union Departments. With the disbanding of the Industrial Union Department, the program and personnel were moved to the Ramazzini Institute, which also assumed the financial responsibilities of the Industrial Union Department.
     DOE withdrew support for the scientific oversight committee, replacing it with another committee entirely of its choosing unrelated to the Ramazzini Institute. However, other elements of program evaluation were expanded from field observation and informal meetings to structured focus groups and the development of a questionnaire used in face-to-face and telephone interviews with workers and retirees of the Oak Ridge National Laboratory. The Institute’s Vice president for Policy Studies, Sheldon W. Samuels, former Executive Vice President of the Workplace Health Fund, remained Principal Investigator for the overall project. Field interviewers included Mrs. Samaras, Deborah McClure and Theresa Norgard, MS, MSW, and Howard Kelman, PhD, Dr. Kelman remained Co-Investigator for the overall project.
     Mrs. Norgard, now of the University of Michigan, was the primary interviewer and, with Dr. Kelman and Mr. Samuels, is an author of the questionnaire. This enabled the integration into the project of her valuable experience as a founder of a national support group for both union and non-union workers with Chronic Beryllium Disease.
     Prior to the development and use of the questionnaire, two collateral studies were completed. The first was a review of the literature by John Packham, PhD, then of Johns Hopkins University School of Hygiene and Public Health. The second was of ambient sources of beryllium dust supervised by Professor Joseph Mihursky, PhD, Chesapeake Biological Laboratory, University of Maryland. These studies and this report will be published in The Human Ecology of Chronic Beryllium Disease, in preparation, Ramazzini Institute-OEM Press. The report itself and a summary can be accessed in the archive of Genes, Ethics & Environment!, the web public policy quarterly of the Institute [www.RamazziniUSA.org.]
     Throughout the history of the project, Dr. Donna Cragle, Barbara Neill and Nancy La Force at Oak Ridge Associated Universities were the data managers and sources of assistance in Oak Ridge. Mr. Paul Wambach, CIH, DOE, provided continuous technical guidance and liaison with the DOE Office of Occupational Medicine and Medical Surveillance. Dr. John Peeters, then of DOE, enabled a smooth transition in project stewardship from the Workplace Health Fund to the Ramazzini Institute. With the help of George Gebus, MD, MPH, director of the office, the study has continued its prospective mission and changed its focus to former and active workers at the Pantex Nuclear Weapons Facility through the Metal Trades Council-Institute sponsored Amarillo Health Project.
     Special recognition is due to the hundreds of former and active workers and their families from Oak Ridge National Laboratory who participated in our study; Paul Burnsky, former president of the Metal Trades Department; Howard D. Samuel and Elmer Chatak, former presidents of the Industrial Union Department; the late William Winpisinger and George Kourpias, former presidents of the International Association of Machinists; the late Jay Turner, former president of the International Union of Operating Engineers; and the Oak Ridge Metal Trades Council. Their encouragement and assistance over a very long time made our work possible and our future path clear.

     This report describes issues, methods of data collection, and results of our prospective study of the Department of Energy’s Beryllium Surveillance Program. The focus is on data collected at Oak Ridge National Laboratory. Here we review some of the collected data in perspective and depth, add additional findings which have more recently become available, and conclude with recommendations relevant to ongoing DOE-sponsored beryllium surveillance activities in Oak Ridge and in other nuclear weapons facilities elsewhere in the country.

     The Beryllium workers surveillance program sought to identify workers in the nuclear weapons facility at Oak Ridge who were exposed to beryllium at some time in their workplace either on a continuing or more sporadic basis. These workers were then to be offered examinations to be screened for evidence of Chronic Beryllium Disease [CBD], and if found to be symptomatic, for the more definitive, though more invasive testing at one of two sites outside of Oak Ridge.
     The initial screening examination was preceded by an educational effort -through mailings of literature prepared by the Workplace Health Fund -designed to inform workers of the possibility of CBD, its course and treatment, the content and purpose of the testing program, and their right to refuse participation in the program, if they should choose to do so. The literature was mailed by Oak Ridge Associated Universities [ORAU] to all those workers who agreed to participate in the initial screening examination, several weeks prior to their appointment. One of the tasks of the Ramazzini Institute was to evaluate the impact of the educational materials, and secondly, the quality and impact of the initial screening examination.
     As the surveillance program was being implemented, it became apparent that nearly one in two workers who were eligible for the program refused participation. This high rate of nonparticipation-higher than the rate at related DOE Nuclear Weapons facilities-threatened to undermine the sought-after identification of workers with sensitivity to beryllium and/or CBD, and/or the validity of tests offered to those whose screening results warranted further testing. Additionally, even among those referred for more definitive diagnostic testing - those with symptoms or other findings suspicious of CBD obtained during the initial screening examination -- nearly half decided to forgo the further testing procedure.
     In view of these high rates of nonparticipation in the program, and in a significant segment of the program, and its consequences for the success of this surveillance effort, we decided that it was important to learn more about the reasons for those high refusal rates and what could be done to increase worker participation in the program.

     In order to accomplish our objectives within the time and resource constraints operative a variety of data collection methods were employed. These included a number of field visits of several days duration on part of several staff members of the Ramazzini Institute, direct observation of the operation of the screening program and shadowing of a number of patients through the examination procedures, and interviews with examination staff-medical and administrative. At each site visit structured interviews were conducted by several staff members, alone or in tandem with participants in the program to obtain their subjective reactions to various aspects of the beryllium program components. Additionally, we interviewed ORAU program participation “recruiters” and analysts, local trade union officials and related worker representatives, and Y-12 health staff members. Finally, focus group discussions on several occasions were held with members of the beryllium support group-an informal organization of Oak Ridge nuclear weapons facility workers who had beryllium disease diagnosed prior to the onset of the surveillance program.
     In addition to this rich mass of qualitative and observational data, we planned and conducted a telephone interview survey with samples of eligible participants and nonparticipants. Rigorous random or representative sampling procedures were not planned nor could they be achieved or embedded in the on-going surveillance program.
     We did endeavor to sample the range-by age, employment status, and duration of employment-of participants and nonparticipants, workers referred for further testing, and the outcome subgroups (those diagnosed with beryllium disease, those diagnosed as not having beryllium disease, those who refused testing, etc). Thus, though the number of interviews selected (154) may be viewed as small, we do believe we have captured the perceptions of the full range of workers in the beryllium surveillance program, including those who decided not to participate, and all those subgroups of importance to the objectives of the surveillance program. We periodically reported our findings to ORAU.
     Finally, we also completed a detailed review of the extant literature concerning participation in screening programs by eligible and targeted populations. A structural analysis of the Oak Ridge community, compared the Amarillo community, the site of a sister facility, based on local chamber of commerce data. These will be published in the full report. Regrettably, there were too few potentially-active former workers in our sample to explore issues of partial disability, a critical issue in the looming problem of active workers removed from work after testing positive in the screening for beryllium-sensitivity.

     Below are the results of site-visits for purposes of evaluation at the Park Med occupational medicine clinic in Knoxville, Tennessee. A summary of the evaluative finding and recommendations follows.

Findings

1.      All participants expressed positive sentiments towards health providers at Park Med and prescreening ORAU interviewers at Oak Ridge. All patients seen during the site visit at Park Med were retirees ranging in age from 63 to 84 years. All had worked at the facility at Oak Ridge and they said that they had some degree of direct exposure to beryllium dust while employed. Nearly all claimed to have some breathing difficulty during the physical exam but did not necessarily attribute this to beryllium or to other occupational/work site factors.
2.      The participants we observed did not know why they were selected to participate, though were anxious about being selected, fearing they may have some exposure related problems, while others were not disturbed and volunteered to participate because “it may help others”, it was “free”, and/or “might help them or others in some ways”.
3.      Staff at Park Med, were polite, friendly, responsive, and very accommodating to patients. They enjoyed working with the retirees, who they felt were polite and “different” from the usual patient groups they see. Physicians also fed back the results of their examinations to patients. Staff at the clinic pulmonary test site were also friendly and responsive to patients. Interaction with x-ray personnel was more routine and perfunctory.
4.      A major and near 100% concern of workers observed at the clinic site was when and how they would learn the results of the screening tests, including the blood workup. Different clinic staff --nurse, physician, receptionist-- volunteered different time spans ranging from 2 weeks to two months, or were vague about time. The data on this issue from our interview survey indicated that non-participants were more uncertain, and had more questions regarding their “selection” to enter the program, than those who chose to participate [22% vs. 14%].
5.      Attempts to evaluate the impact of the educational materials were not too successful. Workers were quite vague in identifying these materials, when or if, it was received and whether they were affected by its contents. Our survey data revealed that 2/3 or more of the participants and the nonparticipants did not recall receiving these materials in the mail prior to the scheduled clinic appointments offered. Among those who recalled receiving these materials, 50% found the contents clear. However, most felt that these materials did not influence their participation decision [84% nonparticipants, 59% participants.] Additionally, few participants [4%] and nonparticipants [18%] discussed their participation with family, friends or co-workers. Moreover, 82% of non-participants and 84% of participants were under a physician’s care at the time they were offered an opportunity to enter the program.
6.      Clinic staff thought there was some redundancy and ambiguity (in smoking history questions) in some of the questions in the forms they used. The physicians felt that they could have benefited from some information on patients’ occupational history (this information is taken at Oak Ridge Site prior to Park Med clinic visit). Physicians did not usually deal with the non-beryllium related occupational health concerns of participants that we observed. Nor, in further discussions, did they feel they could do so given the limited nature of their contact and the purposes of the screening program.
7.      Participants and nonparticipants - who were interviewed in our telephone survey - indicated that they had a good understanding of the reasons for the beryllium screening examination [80% nonparticipants, 85% participants.] Few had questions about CBD prior to deciding whether to enter the program [98% non-participants, 89% participants.]
8.      Among those screened that we interviewed [N=56], a significant number of participants [21, or 40%] had other medical questions they sought answers to, and most participants said that their questions were answered.

1. Screening examination procedures at Park Med seemed appropriate and staff quite responsive to retiree group. But forms could be reviewed to eliminate ambiguous and redundant questions and assess with ORAU the inclusion of certain occupational history information.
2. Educational materials need to be distributed differently perhaps at pre-clinic and clinic sites (Oak Ridge and Park Med), in advance or just prior to Oak Ridge and screening clinic appointments. Perhaps these materials should be reviewed orally with participants.
3. Greater certainty in defining when and how examination results (including x-ray, blood, pulmonary function, etc.) will be shared with respondents is called for, as well as fuller explanation of selection criteria and reasons for their selection.
4. While it seems that an overall positive evaluation of the screening program is certainly in order, it is however based on retirees, and those who are self selected. It would be useful and perhaps necessary to review the experience of active workers, and a follow up of a sample of “refusals”, i.e. those who refused to participate in the screening program.

Figure 1. displays the flow of 2549 eligible beryllium-exposed workers - most of whom (2190) ORAU was able to contact and attempted to recruit into the Beryllium Surveillance Program - during the seven year period of our study of the program. Nearly one half of the 1043 contacted chose not enter the program. Of those who were screened (1147), few were referred for further testing (86). Presumably 1061 persons screened were free of signs or symptoms that warranted further testing. Thirty-nine persons of those who were referred for testing (86), chose not to go, while the results of those who were tested indicate that somewhat more then half (47) obtained a definite (19) or probable (7) diagnosis of CBD disease. There were twenty-one cases in which no diagnosis of CBD disease could be made.
     In this population of eligible exposed workers, the yield of CBD cases, as summarized in Figure 2, was quite low. There were 26 cases of CBD found among 2549 eligible, for a yield of 1.2%, Of those screened [1147] , the yield was 2.3% and among those with suspicious signs or symptoms the yield, as expected, was 30%. If one uses the 86 referral group as a base, the yield is 3.9%, (1/2 of the referral group refused further testing.)
     Would the yield have been higher if the non-participants had been recruited into the program? The participant group is, of course, self selected and differs significantly from the non-participants in having fewer terminated and retired workers (Table 1A) and somewhat more older workers in ages 65 to 74 years [57%] (Table 1B). Are these two factors associated with the occurrence of CBD disease? There is some evidence that participants held more “white collar” jobs than non participants and worked at Oak Ridge for longer periods of time, but these differences are small and not statistically significant.
     Then, too, among the 86 referrals for further testing, those who went for testing were younger [45-64 years] and more were active workers, compared to their counterparts who were older (>65 yrs) and had more retirees. [See Tables 2A and 2B] These two findings were statistically significant. Again, it is difficult to know whether these and other differences are related to the occurrence of CBD disease. But it is clear that there are important differences between those who chose to participate and those who did not even among those with evident signs or symptoms of CBD warranting further testing. Those who chose to go and those who did not, differed importantly from one another.
     In addition to the differences in demographic variables, our telephone interview surveys data point to additional differences. In our survey we interviewed both participants and nonparticipants. Of 154 persons selected for interview 14 could not be contacted and 24 refused. We therefore completed 116 interviews: 90% of participants and 78% of nonparticipants. (See Table 3 for details)
     Although differences in self-rated health between the two groups were evident, the screened group had more persons who rated their health poor, these differences were not remarkable (see Table 4a). But the screened group were more concerned about beryllium disease (Table 4b) than their counterparts. Thus, it appears that those who were screened had more health concerns, especially about CBD than those who refused participation. Our data does not permit us to say whether these concerns were warranted or not.
Specific reasons for participation and non-participation were further explored in the interview survey. These results are shown in Tables 5 and Table 6. In Table 5, although both groups felt equally vulnerable, more of the non participants believed they were not exposed to beryllium, did not want to know the results of the screening tests, felt fine, believed the tests would lead to job problems, and distrusted the beryllium surveillance program.
     Workers who were screened (see Table 6) had more health problems, thought the program could help, felt it was convenient to get to the screening site, and were more concerned about their exposure to beryllium than their counterparts.
     These data echo the qualitative information we obtained from members of the beryllium support group in focus group meetings, the ORAU interview team, and our personal face-to-face interviews with worker participants and non-participants in the program. (There were 34 such interviews.) These findings can be summarized as follows:
     For the beryllium workers support group, composed mainly of six to eight largely active and younger workers, including two females, the main reasons for worker non-participation they cited were:

1. Diagnosis of beryllium disease limits job options, may compromise future employment, and limits personal insurance options, mortgage options, etc.
2. Distrust of contractor, DOE, and the Park Med Clinic. [The clinic was associated with the contractor, but in fact it was selected precisely because it is independent of DOE and the company.]
3. Lack of knowledge of health risk of beryllium. At one time workers were told “you can eat the stuff.”
4. Asymptomatic, non-participants say they have good health presently.
5. “Don’t want to know, beryllium disease not treatable.”

Main reasons for participation included:

1. Symptoms, breathing difficulty.
2. Fatigue.
3. Anxiety about whether you have CBD after becoming knowledgeable about the health risk.

     For the ORAU interview team, main reasons for non-participation given to them by those telephoned during the one of up to six attempts to obtain participants included:

1. No need, asymptomatic.
2. Too busy (retirees).
3. Too old, treatment can’t cure Be disease anyway.
4. Job restrictions if diagnosed as having Be disease (active workers).
5. Workplace educational materials emphasized “right” not to participate.

     ORAU interviewers expressed frustration at high rates of non-participation. They felt that CBD was not high on the list of priorities of potential participants. However, interviewers seemed interested and were not “put off” by the lack of response to the screening program and to Vanderbilt Hospital referrals.
     The ORAU interviewers were the only persons to implicate the Workplace Health Fund educational materials as a factor in workers choosing not to participate. This was never mentioned as a factor by any of the eligible workers and others we met with.

     We will deal with this issue by presenting the open ended responses of workers with CBD, and others newly diagnosed, from among our telephone interview survey data and from our personal interviews. The workers own words follow:

“Describe how your life has been affected by the diagnosis of Be disease.”

• Not really, very minor. I have a friend who is very ill with it, but I like to know what’s going on so it’s still a relief to know.
• It’s had big effect on me my family. Hard to get along sometimes because of it. I’m a little better now, but still have bad times. Worry a lot and when you try to get information from DOE it’s hard to. They told me to go through a lawyer when I wanted to know what the exposure levels were in the building that I worked in.
• I spent all my time trying to study the disease and trying to figure out how this could happen. It’s affected my new marriage, put a lot of strain on us.
• Mostly it’s good to finally know. Don’t feel no better breathing will get worse and now I got diabetes, too from prednisone. That’s the steroid that I take. But finally I know why I’m so short of breath for so long a time.
• Changed my life a lot. I think about it a lot. I don’t really want to talk about it but it’s been bad.
• No change.
• No, but in the back of your mind there’s always the thought especially when I get short of breath; you kinda wonder. But I’m getting older, too.
• Got me medication, taking prednisone. My breathing is worse at least I get some treatment.
• Know what it is. Go see the pulmonary every three months.
• No real change. I don’t worry about it just do what I’ve always done. You think about it and wonder a little but no real change.
• Lot of worry about it and changes your family. They worry as much as I do or more. They don’t understand it. It’s sad.
• Can’t do some things. Difficult to go up steps. Take steroids and breathing steroids and other breathing medicine. Don’t know what’s going to happen.
• I don’t have a life. It’s very hard to plan trips or evenings out. Lots of times, just getting ready to go out can be exhausting.
• Disease not getting any better. Awful short-winded for my age. I don’t like that feeling. Ok otherwise, but some days really not too good. Worry about getting worse.
• It’s made me more cautious. I think about eating and sleeping right.
• Puts pressure on you not knowing what’s going to happen.
• Not really. I don’t let it get me down. Depend on Lord to take care of me.
• Answered a lot of questions about how I was feeling. I thought it was age. I thought I got old awful fast. I was so short of breath I’d pick up my grandson and be out of breath. I thought you got old gradual.
• More questions than before I had it done. Alls I know is that it’s in my blood. How serious is that? Do you know?
• At first I was devastated by it. It’s just like any other disease that you don’t want to hear about but you learn to live with it. Tough at times especially when you know you did everything to prevent having it. It’s real hard.
• Saved my life. If I wouldn’t have had this done they wouldn’t have found the tumors. I could’ve died from it or it might’ve become malignant.
• Peace of mind.
• I watch my health more for shortness of breath. Pay more attention to that.
• Get a little angry. Should be more to it than this. Wished they could’ve told me more about having to do surgery.

“CLOSE - Thank you for taking the time to talk with me. Before we end the interview, is there anything that you would like to add or say about the Oak Ridge beryllium screening program?"

• Beryllium can cause tumors other places in the body. Now I have one in my stomach and in my breast. I’m wondering if these tumors are caused by beryllium.
• Can’t think of anything. Some people are radical at the meetings and they wonder about things. Some people are suspicious about how things are done. Like this one guy who had his blood samples lost. He wonders why he was never contacted for the biopsy and I do too, because he tested just like I did. I told him to keep asking for the tests. He wants them done. He’s in his 40’s and wants to know. I’ve told them about him and his samples getting lost. I just don’t understand why nobody ever contacted him. Why it’s taking so long for them to get in touch with him.
• Get another Doctor besides the one that they give you. Like I could have gone to dinner, but I had to pay my own way. There should be more choices in who you see. I went to Emory Union to be tested for mercury. Shouldn’t just be confined to going to Nashville.
• Try to impress on the contractors the seriousness of the disease and how dangerous it is for people who are sensitive to it. I went to our worker training on beryllium and it wasn’t up to date and the presentation was not strong enough. We focus on radiation, but not environmental toxins. Also there needs to be changes in the screening program. Everyone should get the blood tests no matter what it changes the numbers not to do that and some aren’t getting found.
• The company as a whole holds out on people. They shun responsibility like my medical bills and medicine. We have to carry our own insurance and make co-payments and everything for medicine.
• Get someone to recognize that the steroids are related to the beryllium disease. Worker comp won’t pay for it and sometimes when they increase my steroids, worse having trouble breathing. Sugar goes way up then take a shock treatment one time. Had to pay $600 myself. Shouldn’t have to do that you know.
• The education part of it still don’t feel like they’re educating everyone the way that they should be. Seemed like for a while education was important. People need to know, understand the danger of beryllium and latency period. Changes of getting disease from casual exposure, all of it so they have problems later, they’ll remember beryllium and take precautions now when working around it.
• They aren’t getting the incidentally exposed people or the people who don’t live around here. They aren’t taking true measures of beryllium but are relying on worker self reports instead of samples. They interview employees before testing and that’s what they figure exposure on. That’s crazy.
• I believe the medical department that gave physicals at work were aware of what I worked with and took special care to look for disease. They were good about monitoring my health.
• I’m sure they haven’t got hold of everybody especially at K-25. Not enough effort put forth to contact people who are suffering from the disease and don’t know what to do or where to go.
• The biggest thing is I don’t thing there was much effort to contact people who were exposed. There were several hundred people who worked in the area that I worked in. I don’t think they were contacted.
• I wonder why I’m positive and no one is telling me that I have chronic beryllium disease. I’m almost ready to retire and I’d like to know if my problems are occupational or not. I figure I’ll really be in the dark if I retire before I know. Like with workers compensation and about the disease.
• There’s a lot of unknowns and I hope they begin to understand it better. I’m concerned because I’m going to retire here in a couple of weeks. I want to enjoy whatever life has left to offer.
• You have to spend more time with people so they know what the test results are and you have to get the testing out of Vanderbilt and DOE. Government and Lockheed are big supporters of Vanderbilt and when look at the numbers I hope you’ll see that something isn’t right here. Have to move CBD and sensitized away from all contact with beryllium. One guy with CBD and asthma used to work where I do and they moved him. They need to move all of us.
• I don’t think everyone is being contacted. Several people who used to work there didn’t know about the program, so I told them about it and sent them. Gave them a phone number to call and when they went for the tests and these people had worked in beryllium areas where I really didn’t so I think you need to be better at getting hold of people who used to work there.
• Follow-up with people and see how they are doing and go over test results with them more than once so they know what’s going on.
• Doctors should have took more time. Is this going to bite me down the road or not? There wasn’t much communication. Should’ve sat down and talked to people more. Don’t send them a letter or nothing like that. Talk to them.
• Personally feel that it was a good program. I am very glad to have participated. It was a good program.
• No, I wish I had some questions for you, but I don’t know what to ask.

     Our findings indicate that the presence or absence of symptoms - mainly respiratory, but also fatigue and lower energy levels - are among the key determinants of participation in the screening program. They are not the sole or at times the main determinants. Two other factors, feeling vulnerable and a belief in the efficacy of treatment also come into play. Symptoms act like a trigger propelling individuals into action, into screening and treatment programs. This is especially so against the background of feeling vulnerable. In the absence of symptoms, the action of those with feelings of vulnerability to disease can be sapped by knowledge of poor long term prognosis and treatment efficacy, and for active workers, by job and other personal negative impacts of a positive diagnosis. Invasive aspects of certain tests are also a deterrent.
     The health belief model developed by Marshall Becker (1) and extended by I.M. Rosenstock (2) to explain participation in preventive health programs - which also involved screening though no treatment - seems to fit the beryllium situation. According to the model feeling vulnerable to the disease and believing that treatment will be helpful are necessary to take action (participate) in preventive programs. Action is ultimately triggered by symptoms in the person or a significant other, friend, or co-worker, and modified by sociodemographic, economic and access factors.
     There are two factors in the beryllium situation, which depart from the health belief model, namely the poor health and treatment prognosis and the negative job and related personal impacts among active workers. Denial of beryllium disease risks, interestingly enough, does not emerge as a significant factor in nonparticipation. This is in contrast to other, e.g. cancer, screening experiences. A desire to “get revenge” at the company is another motivating factor for some workers.
     In addition to underlining the importance of educating workers to the health risks of beryllium, that is increasing (without frightening) their sense of vulnerability and modifying their perceptions through other means - such as providing financial and legal assistance - their concerns about negative job and other personal impacts, and poor treatment efficacy remains a significant obstacle to greater participation. This is not an irrational reaction, nor is it denial of the impact of beryllium. It is in fact necessary to recognize the significance of these reality based factors in altering current recruitment tactics, and relevance in developing an altered or different motivation to recruit exposed persons into a CBD screening program.
     Additionally, knowledge of differing characteristics of participants may be helpful in establishing different target groups for alternative recruitment strategies, e.g.: by gender, age, health status, education skill level (if active), and/or quality of exposure to beryllium.
     It is possible, of course, to view the low yield of CBD cases in this population as indicative of a largely uncommon phenomena among nuclear weapons workers, in a program that because of the cost of the effort to find a relatively small number of cases, may not be worth the effort. If one adds to this that the condition cannot be cured, then additional reasons for pause in such efforts may be warranted, however worthy of assistance workers with CBD disease may be. But we believe that this viewpoint is not warranted.
     For the purpose of determining sensitivity to beryllium dust, determined by a blood test for lymphocyte proliferation included in the screening, the beryllium medical surveillance program provides important information of value to management and unions in 1] evaluating the effectiveness of past and present environmental control measures, 2] assisting active workers in choosing whether or not they should remain in jobs where they would have continued exposure, and 3] providing valuable data to workers, unions and management not only relevant to the development of an environmentally-associated abnormality, but also the future risk, individually and as a population, of Chronic Beryllium Disease.
     The value of the test for former workers is that of a forewarning of possible future disease which should be monitored prospectively by the program or by the patient’s physician. Whether or not the program can be justified just as a means of screening for Chronic Beryllium Disease is another question. In our view, we believe the surveillance effort was sufficiently or adequately tested to conclude that the effort and cost to identify sensitivity to beryllium dust and CBD cases among these workers is worth the effort.
      The program, we believe, was or has been compromised by several factors, the essential one being the low participation rate for the screening phase (approximately 50%) and the similarly low participation rate among symptomatic or sensitized workers. Among those referred for more definitive testing, about half refused to participate. Then, too, although there is no known cure for CBD disease, it is treatable and its symptoms can be alleviated to some degree. Also, there are some community and governmental resources, which could be utilized to lessen the personal, financial, vocational, and social impact of beryllium disease upon the individual and his/her family. It is also possible that the definition of eligibility -exposure to beryllium at the work site- was too vague or broad and thus expanded the “eligible” population to include many workers not at risk, and consequently lowered the case finding yield. A more stringent definition, appropriate to the level of scientific understanding, on the other hand, would have the effect of increasing the yield. There is no evidence available that this issue was tested.
     In opposition to these possible positive factors, there is the still-to-be examined negative impact of the growing number of workers - albeit at this time few in number - who are being removed from their job because of the identification of positive risk factors through the beryllium surveillance program. So far, this has meant only reassignment and no loss of wages, although there is already evidence of fear and stigma. As the numbers grow, this outcome may deteriorate and a clear economic threat of the program may be perceived.
     Based on our experience over the years we have monitored the ORAU program and on the data we collected over this period of time, from qualitative interviews with nuclear weapons workers, key staff, and referrals at the site and in the community, the telephone interview survey, and the detailed literature review of related screening programs, we offer the following suggestions and recommendations to both the unions and the employers for conducting a more adequate beryllium disease surveillance program:

1. It is essential to mount a vigorous educational program concerning CBD disease-its symptoms, risks, and treatment possibilities-among current and former nuclear weapons workers, and the families-together with a complete and detailed description of the several segments of the surveillance program. A single mailing is insufficient.
2. The screening, testing, and education components of the program need to be administrated and physically located outside of the plant, the employing company, and the health facilities and not by physicians that are associated with the employing company and the Department of Energy.
3. Sustained and consistent follow-up over time is called for, of nonparticipants and especially of those workers who are referred but choose not to go for further testing.
4. The benefits actual and potential of program participation need to be stressed and strengthened. The recent Federal compensation initiative to make economically-whole, orphan occupationally diseased workers, that is to make them eligible for both medical costs and compensation for salary loss is certainly a bright spark for the future of medical surveillance in DOE facilities.
5. The current medical removal program for participants who test positive in the Beryllium Medical Surveillance Program not only needs to be monitored and evaluated on a continuing basis, but accurate information from a credible source about what is happening to the removed worker is essential to the well being of the both the workers and the surveillance program itself. [In similar programs in the private sector, psychological, social and economic trauma have been experienced by “removed” workers.]
6. Altruism, which was evident in our interviews with workers in the screening clinic and in comments offered at the close of the telephone interviews should be reinforced through personal and public recognition, and even rewarded. The altruism evident in our interviews is a particularly important and timely point, one which can perhaps be built upon in designing or redesigning workplace health or monitoring programs. An immediate case-in-point concerns the issues surrounding genetic testing in the workplace. Much has been made of the issue of possible worker resistance to such efforts based on concerns vocational, social and/or job implications of positive findings of illness predisposition or vulnerability to aspects of the work environment or job demands. In the course of our monitoring the surveillance program, we found that 80% [N=73] of the participants and non-participants indicated that they did not know what a genetic test was. [Only seven were asked to take a genetic test and five agreed.] Nearly half thought the test was, or could be, harmful.

     Recruitment for the genetic test took place during a December 1997 meeting of the DOE-ORNL provided support group for workers with positive tests. The researcher was introduced by the group’s moderator, an ORNL psychologist. What is most interesting in this context, was the clear warning by the researcher that a benefit for those tested is unlikely. When the researcher returned some months later to request further blood samples, he received a similar response. [E-mail from group leader Gary Foster to Ramazzini Institute. 08/08/00.]
     These limited data suggest that it is not the genetic test itself that may be problematic [and perhaps opposed at some point], but it is the trustworthiness of the test program sponsor and/or the job and social consequences of the test results, that may often be the issue. Although the numbers were small, altruism might explain why five of seven agreed to take the test despite a lack of benefit and perhaps a lack of knowledge of what is the test is and how the results might affect their job or social status. On the other hand, seeking consent under conditions where social pressures compromise the ‘voluntariness’ of the consent taints the process and the altruistic motivation itself.

7. Discrimination in obtaining personal insurance, home mortgages, bank loans and other financial problems need to be examined .
8. Appropriate and active involvement of workers in planning, conducting and continuously evaluating the surveillance program should be embedded in the program effort.
9. Continuing objective evaluation of the conduct of the program by an experienced but disconnected organization should be planned for. Periodic feed back of evaluative findings should be required, as well as the responses of program administrative staff and nuclear worker representatives to these reports.

     The application of the above recommendations may not be easily accomplished. We believe, nevertheless, that their achievement will go far toward creating a more trusted environmental and medical surveillance program which will prove to be more efficacious in realizing its objectives.

1. Becker, MH. 1974. The health belief model and personal health behavior. Health Education Monographs 2:354-386.
2. Rosenstock, IM. 1975. Patient’s compliance with health regimes. JAMA 234:402-403. Becker and Rosenstock. 1974. Social-psychological research on determinants of preventive health behavior. In The behavioral sciences and preventive medicine: opportunities and dilemmas. DHEW [NIH] 76-878. pp 25-36. Washington: GPO.