The first recommendation of the report is that the CDC "assume the lead responsibility for implementing the national agenda for the prevention of disability." Yet, as is evident in the body of the report, the committee never considered the relative merits and disadvantages of locating a national prevention program in the CDC as compared with other agencies. For example, it did not discuss the implications of locating leadership for a disability prevention program in the Office of the Surgeon General (traditionally thought to be the chief disease prevention agency) or of locating it in a health agency as opposed to a Labor Department agency (e.g., the Occupational Safety and Health Administration) or a Justice Department agency (e.g., the Office of Civil Rights). Arguably, these and other agencies have as much experience with disability prevention as the CDC—albeit in nonmedical models of disability prevention. To my knowledge, the CDC never asked explicitly to be cast in the lead role, but the fact that the committee did so unreflectively, with no research into the question, suggests that the committee was operating under the strong influence of its sponsor.

Beyond the design of the task, the CDC constrained the committee in more immediate ways as well. CDC representatives attended the committee's meetings and occasionally indicated their satisfaction or dissatisfaction with the direction of the discussion. Committee members were told explicitly in one meeting that the CDC wanted a report they could "wave on the Hill" to demonstrate their need for larger appropriations.

Early in the course of the study, I was concerned that the emerging report neglected the whole topic of prenatal diagnosis and abortion. I made a presentation to the committee documenting the importance of access to contraception, prenatal diagnosis, abortion, and prenatal care in the prevention of developmental disabilities. During the discussion of my presentation, a representative of the CDC told the committee, "We don't want a report that is controversial."

Nevertheless, with the encouragement of staff, I drafted a piece about these issues for the report. Besides being read by the entire committee, the piece went back and forth between me and the staff for substantive editing. During one of these exchanges, I discovered that these drafts were being "blind copied" to the CDC. When I made this charge in an earlier draft of this dissent, the IOM staff produced a memorandum about the abortion draft on which the sponsors of the report were blind copied. The staff maintain that only an "informational" memorandum and not drafts of the abortion section were passed to the sponsors. I, of course, cannot prove exactly what pieces of paper were circulated to sponsors, but clearly some communication between committee staff and sponsors was concealed from committee members. Moreover, the staff indicated to me in phone conversations during the course of the study that the sponsors were "concerned" about my draft and wanted it "toned down," suggesting that committee staff were engaging in discussions



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement