Searching Eyes: Privacy, the State, and Disease Surveillance in America (review)

Does society’s need to improve public health using surveillance and institutional intervention trump the individual’s right to privacy? Studying publicly available records, the evolution of the debate is meticulously researched and well documented by Fairchild, Bayer, and Colgrove in Searching Eyes: Privacy, the State, and Disease Surveillance in America. For the most part, the authors opt for journalistic objectivity, reporting how, over time, proponents’ positions have shifted, championing one response in a given situation and taking a philosophically opposed stance in another. This leaves the reader the opportunity to develop a personal understanding of the factors motivating strongly held oppositional views, and of the degree to which the debate has resulted in beneficial controversy or dysfunctional conflict.

The narrative begins in 1874, when Massachusetts physician Henry Bowditch led members of the state board of health in “the first practical attempt in any part of the world to make a systematic weekly registration of diseases.” This early attempt to survey infectious diseases followed discoveries by Pasteur and Koch and the promise of the new scientific field of bacteriology. The text concludes over a century later, in 2005, when the NewYork City Commissioner of Public Health, Thomas Frieden, sought to extend the scope of his department to monitor and medically intervene in the core of people with diabetes and obesity. Major questions guide the historical narrative. What impulse or anxiety, either implicit or explicit, motivated the public health officials as they first proposed surveillance activities and subsequently sought to extend the scope of their efforts? How did the changing political climate affect the debate?

If a fault is to be found with Searching Eyes, it lies in the impression that individual chapters were written by different authors with different styles. This weakens the cohesiveness of the text. Furthermore, at times primary citations are not used. For example, reference to the seminal works linking cancer to cigarette smoking by Doll and Hill, as well as by Wynder and Graham, are not directly cited but instead supported by a description from a secondary source.

The authors deliberately choose to concentrate only on data officially recorded. This is a legitimate choice. It must be recognized, however, that studies of privately archived documents might provide insights beyond speculation about the not-so-politically-correct motivations of the debate participants. For example, in the battle to permit surveillance to control tuberculosis (ch. 2),“paternalistic” physicians are pitted against leaders of the public health movement. On the surface, private physicians publicly argue with righteous indignation for the necessity to uphold the Hippocratic Oath to maintain doctor/patient confidentiality. But a critical reader also might consider not-so-latent factors, such as money, power, and class, and recognize that “free care” provided by the public health system would diminish the doctors’ patient base and associated revenues. Similarly, on the surface, public health officials argue for “free sputum analysis,” the right to inspect homes of the possibly infected, and medical records review to form the basis for epidemiologic research. Just simple inspection of the proposed Department of Health organizational chart (p. 52) illustrates how the DOH central position would expand its power base by intricately linking itself to hospitals, charitable organizations, sanatoria, and TB clinics, and by excluding private physicians. As Fairchild, Bayer, and Colgrove concentrate primarily on available accounts, they provide little insight into the possibility that what is documented publicly might obscure a less politically correct stance of personal income vs. an attempt to grasp a larger budget and stronger control.

Persons with disease and their advocacy groups are also conflicted. Those of higher SES generally are willing to pay for the privacy inherent in the patient/doctor relationship. Those of lower SES might be willing to trade potential public disclosure of their health information for free care. Just like tuberculosis, the sexually transmitted diseases of syphilis and AIDS/HIV carry a social stigma; if disclosed...