Can Suspicious Activity Reports Trigger Health Data Gathering?

In an article entitled “Monitoring America,” Dana Priest and William Arkin describe an extraordinary pattern of governmental surveillance. To be sure, in the wake of the attacks of 9/11, there are important reasons to increase the government’s ability to understand threats to order. However, the persistence, replicability, and searchability of the databases now being compiled for intelligence purposes raise very difficult questions about the use and abuse of profiles, particularly in cases where health data informs the classification of individuals as threats.

First, a little background. We traditionally think of law enforcement as needing some kind of probable cause to ground or justify the pursuit of an investigation. However, with the rise of the new Information Sharing Environment (often enacted by fusion centers, which provide one-stop shopping for access to data), a much broader set of law enforcement prerogatives is emerging. Fusion centers have promoted a domestic intelligence apparatus, which is designed not merely to solve crimes but also to generate a wide range of knowledge which could lead to the deterrence and detection of “all threats, all crimes, all hazards.”

The Department of Homeland Security has taken a number of innovative steps to deputize monitoring of individuals, asking personnel ranging from local law enforcement to cable repairmen to hotel cleaners to be on the alert for suspicious activity.* Once such activity is detected, the detector can in some cases file a persistent Suspicious Activity Report. These SARs are entered into an FBI database, and quite possibly inform many other counterterror, intelligence, and even private sector initiatives. Arkin & Priest’s story gives a sample Suspicious Activity Report, and speculates about how its creation may affect the object of the profile:

The FBI is building a vast repository controlled by people who work in a top-secret vault on the fourth floor of the J. Edgar Hoover FBI Building in Washington. This one stores the profiles of tens of thousands of Americans and legal residents who are not accused of any crime. What they have done is appear to be acting suspiciously to a town sheriff, a traffic cop or even a neighbor.

[For an example of what might go in the database, consider] Suspicious Activity Report N03821 says a local law enforcement officer observed “a suspicious subject . . . taking photographs of the Orange County Sheriff Department Fire Boat and the Balboa Ferry with a cellular phone camera.” The confidential report, marked “For Official Use Only,” noted that the subject next made a phone call, walked to his car and returned five minutes later to take more pictures. He was then met by another person, both of whom stood and “observed the boat traffic in the harbor.” Next another adult with two small children joined them, and then they all boarded the ferry and crossed the channel.

All of this information was forwarded to the Los Angeles fusion center for further investigation after the local officer ran information about the vehicle and its owner through several crime databases and found nothing. Authorities would not say what happened to it from there, but there are several paths a suspicious activity report can take:

At the fusion center, an officer would decide to either dismiss the suspicious activity as harmless or forward the report to the nearest FBI terrorism unit for further investigation. At that unit, it would immediately be entered into the Guardian database, at which point one of three things could happen:

The FBI could collect more information, find no connection to terrorism and mark the file closed, though leaving it in the database. It could find a possible connection and turn it into a full-fledged case. Or, as most often happens, it could make no specific determination, which would mean that Suspicious Activity Report N03821 would sit in limbo for as long as five years, during which time many other pieces of information about the man photographing a boat on a Sunday morning could be added to his file[.]

[That data includes] employment, financial and residential histories; multiple phone numbers; audio files; video from the dashboard-mounted camera in the police cruiser at the harbor where he took pictures; and anything else in government or commercial databases “that adds value,” as the FBI agent in charge of the database described it. That could soon include biometric data, if it existed; the FBI is working on a way to attach such information to files. Meanwhile, the bureau will also soon have software that allows local agencies to map all suspicious incidents in their jurisdiction.

Given the expansive reservoirs of data already accessible to fusion centers, I would not be surprised if they took the position that health records “add value” to the data gathering. Civil libertarians can object to many types of data gathering, but for purposes of this post, I would like to focus on healthcare data. First, to what extent can a health condition itself give rise to a Suspicious Activity Report? Secondly, are there any concerted efforts to deputize medical personnel to report on suspicious activity? Finally, and I believe most importantly, how is the vast store of healthcare data presently associated with individuals utilized by the data mining programs of the surveillance state?

We daily learn of troubling data gathering practices online. For example, Arvind Narayanan has described rather indiscriminate data gathering by third parties:

The Facebook “like” button is a prominent . . . example[] of third-party tracking not directly related to behavioral advertising. . . . Facebook can keep track of all the pages you visit that incorporate the button, whether or not you click it. Did you know, for example, that the UK National Health Services website has the like button, among other trackers, on all their disease pages?

One need only visit the Wall Street Journal’s recent series on privacy to realize that all manner of health-related data can be generated about an individual with little to no restrictions imposed by HIPAA or effectively enforced by the FTC. To take one example, consider the scraping (copying) of data at a site called PatientsLikeMe:

At 1 a.m. on May 7, the website noticed suspicious activity on its “Mood” discussion board. There, people exchange highly personal stories about their emotional disorders, ranging from bipolar disease to a desire to cut themselves. It was a break-in. A new member of the site, using sophisticated software, was “scraping,” or copying, every single message off PatientsLikeMe’s private online forums.

Who knows how many incidents like this go unreported each year? Finally, the government itself is keeping a record of prescription drug use, which apparently was used after the Virginia Tech shooting. Law enforcement exceptions to HIPAA (and, presumably, HITECH) may give an official imprimatur for similar activities even if they involve “covered entities.”

Conflicting Interests

Individuals are all too eager to sign up for new health “apps” and affinity groups without having any sense of how these activities and affiliations can affect their future. There is still an uninformed public/private distinction affecting far too much of consumer conduct; I hear so-called internet experts wondering why anyone would worry about data stored by a private company because “it’s not the government; it can’t do anything to you.” Arkin & Priest have consistently shown that the public/private distinction is evanescent at best, a confounding development in social affairs that leaves libertarians sounding like communists. The decline of privacy rights is closely related to the death of the public/private divide.

The clash of intelligence prerogatives and health privacy has always raised difficult issues, which will become even more pressing if health data is seamlessly integrated into threat assessment systems. For now, I would just like to make one claim about the need for the government to be forthright about whether it is collecting health care data while profiling citizens. Such data gathering should not be what David Pozen calls a “deep secret;” that is, citizens should not be “in the dark about the fact that they are being kept in the dark.” Rather, we need to understand whether this very personal and important data is being commandeered to fight an “enemy within.”

There are broader principles to govern the workings of the surveillance state. Julie Cohen’s recent article in Social Research observes that there is a much larger political economy of surveillance that has accelerated both data gathering and profiling:

Devaluation of privacy is bound up with our political economy and with our public discourse about information policy in important ways that have little or nothing to do with official conduct. . . . Flows of data are facilitated by corporate data brokers like ChoicePoint, Experian, and Axciom. To help companies (and governments) make the most of the information they purchase, an industry devoted to “data mining” and “behavioral advertising” has arisen; firms in this industry compete with one another to develop more profitable methods of sorting and classifying individual consumers.

In the United States, a number of federal agencies have awarded multimillion dollar contracts to corporate data brokers to supply them with personal information about both citizens and foreign nationals. Privacy restrictions that limit the extent to which the government can itself collect personal information generally do not apply to such purchases at all. The government has deployed secrecy to great effect where these initiatives are concerned, with the result that we still understand too little about many of them. Legal regimes purporting to guarantee official transparency are in fact indeterminate on how much openness to require.

These processes let important decisionmakers in both the private and public sectors exist behind a “one way mirror.” Even if full transparency would compromise data gathering, citizens must know whether certain critical information (including health data) is being commandeered by the domestic intelligence apparatus.

*I use the term “innovative” here in a purely descriptive sense, without the aura of approval that usually accompanies the term.

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