Privacy Protection Contradictions Get
Steadily Scarier
by Judith Broadhurst

More than two-thirds of the CIOs surveyed by Health Management Technology magazine ranked implementing HIPAA security and privacy as their #1 priority for the next two years, with "medication error reduction/patient safety" way down that list, as #11 on their list of 15 priorities. (And only 11% cited error patient safety as a priority, at that.) This is not because patient safety isn't important to them, of course, but merely because they've already got all they can handle to meet the federal government's April 2003 deadline for submitting HIPAA privacy-protection plans.

Yet it is mainly the federal government itself that is rapidly moving to endanger privacy of medical and other vital personal records of US citizens in ways that sound like something out of a science fiction novel. The story goes roughly like this:

Attorney General John Ashcroft sponsored a plan to have postal, transportation and utility workers spy on US citizens through what he called the Terrorism Information and Prevention System, known as Operation TIPS (for The Inevitable Police State, said one radio commentator). TIPS was to be part of President Bush's Citizen Corps, which, in turn, was part of his USA Freedom Corps, and both were folded into the Homeland Security Act of 2002, aka the USA Patriot Act. Are you lost yet? No matter. For this part, just remember the spy-on-your-neighbor conditions in Warsaw or Berlin during the Holocaust. Thankfully, TIPS was axed by Congress earlier this year.

Now the Bush administration has established, by fiat, a far wider-reaching variation, known as Information Awareness Office , also known as Total Information Awareness (TIA), with programs such as "truth maintenance," Babylon and Human Identification at a Distance (HumanID); an amateurishly designed logo with creepy implications; and a slogan that translates as "knowledge is power." Indeed.

This, uh, innovative program comes to us through DARPA, part of the Department of Defense — the same agency that invented the Internet — so it will "integrate technologies developed by DARPA (and elsewhere as appropriate)." That's part of the rub: There are many opportunities for funding through this program that could ultimately benefit telehealth and telemedicine. But few corporate managers would approve a proposal for an initiative that included this statement: "Planned Accomplishments: TBA." The stunner is that the head of this outfit is John M. Poindexter who was convicted on five felonies during the Iran-Contra scandal, including two counts of lying to Congress. The only reason he isn't in prison, instead, is that the whole thing had to be dropped during the appeal process on a technicality, essentially. But he's still guilty de facto.

According to the TIA Web site, the information the feds will collect about anyone in the US encompasses this partial list:

• medical
• financial
• education
• transportation
• travel
• place/event entry
• veterinary

Meanwhile, foregoing its usual policy, the FDA has decided not to regulate an implantable ID microchip about the size of a grain of rice, which emits a 125-kilohertz radio frequency signal that can be picked up by a scanner up to 4 feet away. That chip has already been embedded in 3 members of a family in Florida, according to a story in Wired. Its makers claim that, if such chips contained medical information, it could save lives if people were unconscious and there was no one to tell doctors about patients' medical histories. Maybe so. But how long will it take before it's routine to embed one in the inner wrist or palm of every newborn baby?

And in other news, the Denver Post reports that "Some of the nation's largest employers are borrowing technology from managed care plans that extracts the details of patients' medical records — everything from which doctors they frequent to the drugs they take and even the prescriptions they choose not to fill or the doctors appointments they choose not to keep. The goal [of what is called "outcomes management"] is to stop what have become uncontrollable health care costs by identifying consumers who may be at risk for developing expensive, chronic medical conditions...."

Michael Korda, CEO of Random House, warned us 20 years ago in Power: How to Get It, How to Use It. "The person who controls the computer is thus in a singular position of power," he wrote, and went on to describe how that person gains power over not just information, but people. (Korda's book was published in 1975, just 3 years after the first public demonstration of what we now call the Internet.)

Before you dismiss all this as the alarmist screed of just one too-liberal freelance writer and editor, read a few of the stories cited below from the New York Times, the Washington Post, Wired, the Denver Post, ABC's "Nightline" and the Health Privacy Project at Georgetown University.

Yes, we need better surveillance to protect ourselves against terrorism. Yes, we need excellent digital records to take advantage of technology. But if we don't take the long view and act as watchdogs over our own privacy rights, too, it will take a generation to regain the privacy rights we had just last year. If then. As Hendrik Hertzberg pointed out in The New Yorker, there's still time to raise a ruckus and get Congress to take action.

Sources:

CIOs Survey: Landscape in Flux, Health Management Technology, December 2002 (See Figure 8)

Too Much Information, by Hendrik Hertzberg, Talk of the Town, The New Yorker, December 9, 2002 (this article not online)

Pentagon Plans Program to Search Databases of Personal Information, Health Privacy Project (Institute for Health Care Research and Policy, Georgetown University), November 18, 2002. Also, Government Plan Disregards Privacy Protections by Janlori Goldman, director of the Health Privacy Project, iHealthBeat, December 11, 2002

Total Information Awareness, Washington Post, November 16, 2002

A Fragile Balance: Tension Between Security and Privacy Worries Some Observers, "Nightline," ABC News, November 14, 2002

You Are a Suspect, by William Safire, New York Times, November 14, 2002 (fee for full article)

Threats and Responses: Intelligence Pentagon Plans a Computer System That Would Peek at Personal Data of Americans, by John Markoff, New York Times, November 9, 2002 (fee for full article)

Health Care Invasion: Concept Saves Employers Money at Expense of Privacy, Denver Post, November 10, 2002

ID Chip's Controversial Approval, Wired, October 23, 2002

Office of Civil Rights, which has oversight responsibilities for the privacy provisions of HIPAA

US Department of Defense Information Awareness Office