5
Participant Cohort

INITIAL IDENTIFICATION

Department of Defense (DoD) personnel assembled the initial roster of Project SHAD (Shipboard Hazard and Defense) participants using military unit rosters and continued to update this roster as new information was obtained. For Navy personnel, the DoD obtained the quarterly unit rosters of each ship in each Project SHAD test, using the rosters just before and after the actual test dates; e.g., the December 31, 1963, and March 31, 1964, quarterly rosters were selected for a February 1964 test. The quarterly unit rosters for enlisted personnel, BuPers Report 1080-14, record every enlisted person on that ship on the given day, showing name, service number, and rate; the listing is arranged by rate (e.g., machinist mate). Officers present on the ship on the given date of report are listed separately on the Officer Distribution Control Report, which shows name, service number, and job title (e.g., commanding officer).

It is important to note that the use of only quarterly rosters to identify participants may not provide a complete list of participants. In theory, using the previous example, a sailor could have joined the ship’s complement on February 1, 1964, left on February 28, 1964, and would have been a participant who did not appear on either of the two closest quarterly rosters. For this reason, the DoD also obtained and reviewed the daily personnel diaries for each ship in each Project SHAD test. We also did this and keyed every individual entry, along with a description of the reason for movement on or off ship (e.g., absent of sailing). This allowed us to compare the daily personnel diaries with the quarterly unit rosters and determine a complete list of possible participants. In cases where we identified Navy personnel who were not on the DoD list, we provided these names, along with service numbers and unit documentation of their participation, to the DoD for validation. Upon DoD review, we either kept in our study the potential participants they validated or excluded the potential participants they did not validate. Marine participants were occasionally listed in Navy unit records, particularly the daily personnel diaries.

The process for Marine unit records was similar to that for Navy records. We used the monthly personnel roster to assemble the list of Marines by name, military service number, and pay grade. This was supplemented by company diaries that documented the movement of individuals. Again, we keyed all the entries on these two kinds of reports and compared our combined roster with the DoD roster. If we found any additional Marine participants, we sent their names, service numbers, and documentation to the DoD for review. Only the participants validated by the DoD were added to our study file. The Department of Veterans Affairs (VA) also added data from its own databases to the data it received from the DoD. The VA data included identifier data, claims data, address, and so



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Long-Term Health Effects of Participation in Project SHAD (Shipboard Hazard and Defense) 5 Participant Cohort INITIAL IDENTIFICATION Department of Defense (DoD) personnel assembled the initial roster of Project SHAD (Shipboard Hazard and Defense) participants using military unit rosters and continued to update this roster as new information was obtained. For Navy personnel, the DoD obtained the quarterly unit rosters of each ship in each Project SHAD test, using the rosters just before and after the actual test dates; e.g., the December 31, 1963, and March 31, 1964, quarterly rosters were selected for a February 1964 test. The quarterly unit rosters for enlisted personnel, BuPers Report 1080-14, record every enlisted person on that ship on the given day, showing name, service number, and rate; the listing is arranged by rate (e.g., machinist mate). Officers present on the ship on the given date of report are listed separately on the Officer Distribution Control Report, which shows name, service number, and job title (e.g., commanding officer). It is important to note that the use of only quarterly rosters to identify participants may not provide a complete list of participants. In theory, using the previous example, a sailor could have joined the ship’s complement on February 1, 1964, left on February 28, 1964, and would have been a participant who did not appear on either of the two closest quarterly rosters. For this reason, the DoD also obtained and reviewed the daily personnel diaries for each ship in each Project SHAD test. We also did this and keyed every individual entry, along with a description of the reason for movement on or off ship (e.g., absent of sailing). This allowed us to compare the daily personnel diaries with the quarterly unit rosters and determine a complete list of possible participants. In cases where we identified Navy personnel who were not on the DoD list, we provided these names, along with service numbers and unit documentation of their participation, to the DoD for validation. Upon DoD review, we either kept in our study the potential participants they validated or excluded the potential participants they did not validate. Marine participants were occasionally listed in Navy unit records, particularly the daily personnel diaries. The process for Marine unit records was similar to that for Navy records. We used the monthly personnel roster to assemble the list of Marines by name, military service number, and pay grade. This was supplemented by company diaries that documented the movement of individuals. Again, we keyed all the entries on these two kinds of reports and compared our combined roster with the DoD roster. If we found any additional Marine participants, we sent their names, service numbers, and documentation to the DoD for review. Only the participants validated by the DoD were added to our study file. The Department of Veterans Affairs (VA) also added data from its own databases to the data it received from the DoD. The VA data included identifier data, claims data, address, and so

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Long-Term Health Effects of Participation in Project SHAD (Shipboard Hazard and Defense) on. We received initial databases from the VA and the DoD as well as subsequent updates. The final number of participants in the study was 5,867. OUTREACH EFFORT TO IDENTIFY ADDITIONAL PARTICIPANTS Throughout the course of participant identification, we kept our advisory committee apprised of our progress. In the process, our advisory panel became convinced that neither we nor the DoD had a foolproof method for determining whether we had a complete participant list. They thus advised us to undertake an outreach effort to see if additional participants could be located. After consulting with the panel and with various veteran service organizations (VSOs), we came up with a draft of a letter that was posted to our website and published in several VSO venues. The letter and a form on which a veteran could report his information were developed and reviewed by our panel and several VSOs. The letter invited Project SHAD participants who had not been contacted by the VA to contact the Medical Follow-Up Agency (MFUA). The form also asked for identifying information as well as participation information, including documentation of participation, if available. MFUA asked the responders for permission to forward their information to the DoD for confirmation, and a deadline of August 31, 2005, was set for responses. To our knowledge, both the American Legion and the Vietnam Veterans of America published our outreach material. The letter and data form were reviewed and approved by the National Academies’ institutional review board (IRB) before being sent to VSOs. The letter and data form are in Appendix C, along with the list of VSOs to which this material was sent. By the end of the response period, 14 letters had arrived in response to the outreach effort. Of these, 9 were already identified as Project SHAD participants, many of whom sent copies of the Project SHAD letter they had already received from the VA as documentation of participation; apparently, our instructions were unclear or were not followed in these cases. In 3 additional cases, we could not determine whether the responder was a participant in Project SHAD. Of the 3, 1 was a possible Eager Belle participant, but was not on the VA or DoD list and sent no documentation, and the other 2 listed tests or ships that were not known to be part of Project SHAD. Two other respondents represented possible new participants not previously known to us. One of them served on the light tugs, and the other was a member of Project SHAD’s technical staff. We had known that the list of participants with light tug service or technical staff service was not complete, so these responses were both expected and welcome. We forwarded the documentation sent by these two men to the DoD for confirmation, with the hope that the material they sent would lead to the identification of other new participants. Only the self-reported participants validated by the DoD were included in the study. In light of the amount of effort made, the response we received was not overwhelming. Indeed, most of the respondents not only were known to us but had also been contacted by the VA. However, the responses from the two potential new participants were exactly the kind of contact we had sought, and they came from two of the groups whose enumeration we knew was likely to be incomplete. Although we cannot draw any definitive conclusion from the outreach effort, it seems reasonable to conclude that there were not a large number of Project SHAD participants of whom we were unaware. GATHERING FURTHER IDENTIFIER DATA FROM MILITARY RECORDS By and large, the unit records that formed the basis for identifying Project SHAD participants identified these participants by name, rank, and military service number. At the time of the initial Project SHAD tests, Social Security numbers (SSNs) had not yet been adopted as the military’s identification number. The lack of SSNs for Project SHAD participants severely hampered follow-up efforts, including limiting the VA’s ability to conduct an outreach program by sending letters to all known Project SHAD participants. Lacking SSNs, we were greatly handicapped in conducting a records-based mortality follow-up, and locating individuals to invite them to participate in a health study was practically impossible. We tried to find a readily available source of SSNs for the Project SHAD participants, and undertook a special pilot study on this topic. From the file of Project SHAD participants provided by the VA, we randomly sampled N = 200 computerized records that did not contain a SSN. We subjected these records to searches of the microfiche

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Long-Term Health Effects of Participation in Project SHAD (Shipboard Hazard and Defense) indices known as Bidex and Tridex and matched them against the Beneficiary Identification and Records Locator Subsystem (BIRLS) file using TARGET and against a computerized cross-index file of service numbers and SSNs (see Chapter 4 for a description of these data sources). We then ordered hard-copy Navy personnel records for all 200 and abstracted military service number and SSN information from them. We used these data to calculate SSN finding proportions by source. When we drew the random sample, we did not appreciate the fact that it included 9 Army records, 16 Marine Corps records, and 1 Navy medical (rather than personnel) record. Removing these 26 records from consideration left N = 174 records in the random sample. Our request for 174 records netted only 142; the remainder were either charged out to someone else (N = 8) or the hard-copy record could not be found (N = 24). Thus our hard-copy record yield was 81.6 percent (142/174). All of the 142 hard-copy Navy records we obtained had SSN information. In 40 cases, the SSN was found only in the hard-copy record, while in the remaining 102 cases, the hard-copy record verified an SSN from another source. Because we independently searched the other sources for all 200 records, we had SSN information from these sources even when no hard-copy record was obtained. Among the 8 “charge-outs” we had 4 SSNs from another source, and among the 24 “not found” we had 6 SSNs. Combining all sources, 87.4 percent ([142 + 4 + 6])/174) of records yielded an SSN from at least one source. In summary, using a variety of searches in our pilot study, we were able to find SSNs for nearly 90 percent of the sample subjects whose SSNs were absent from the original DoD or VA file. When we completed our pilot study, we consulted with our expert advisory panel, and in the end, we all had to reluctantly conclude that a sufficient number of SSNs could only be obtained by ordering military personnel records and abstracting information from them, as well as conducting the easier (and less expensive) searches of microfiche and computerized files. However, this also afforded us an opportunity to collect dates of birth, another crucial piece of information not readily available in complete and accurate form from any other source, as well as demographic information, such as race or ethnicity. The SSN information we gathered was seen as useful by both the DoD and the VA. However, when we investigated returning SSNs to the VA, we found out that IRB restrictions would not allow this. Instead, we returned the list of SSNs we found in the military records back to the DoD.