Editor's letter: Pretty good health privacy?

The sanctity of personal information is being tested like never before

The sanctity of personal information is being tested like never before, as exemplified in the battle between the Bush administration and some members of Congress over anti-terrorism surveillance techniques.

Our cover story describes how the health community is also struggling to delineate privacy limits as it adopts new techniques for parsing personal health information. Medical researchers say that advances in the realm of evidence-based medicine — which, like anti-terrorism surveillance, requires sifting through mountains of data to find telltale patterns — are yielding important discoveries. Such techniques might lead to the ability to match people’s living conditions to disease susceptibility or determine which treatments work better for very young or old patients. But some privacy advocates worry that researchers will be able to link health information to individual patients.

The common denominator for law enforcement and medical research is technology — powerful data storage systems and networks that can collect and process enough scattered records so that medical professionals can make expert guesses and judgments. In both fields, new technologies are forcing policy-makers to rethink the privacy costs for citizens. As our story shows, the solution will likely require a mix of technology and policy.

No challenge better represents the overlap between health and law enforcement technology than efforts to plan for a possible pandemic. In both arenas, the battle will be won or lost at the local level. We take a look at the incremental successes — and the gaps — in local, state and federal government efforts to build an effective national pandemic surveillance system. To see who’s tackling the challenge head-on, take a look at our story on why the city health administrator in Lubbock, Texas, views that relatively isolated town as a potential pandemic beachhead, or why health officials in Hawaii see their state as a likely entry point for avian flu and what they’re doing to prepare for a pandemic.

Despite the problems, health planners are inventing and adapting information technology in ingenious ways to meet the pandemic threat. Researchers at the University of Iowa are considering another technology proposed for use in the “war on terror” — an electronic trading market — to help track a pandemic. Biochips can help shrink the time it takes to diagnose a patient’s particular strain of flu. And advances in supply chain technology are potential models for how to automate vaccine delivery.

We hope our coverage of these stories and others in this issue contributes to the progress being made in health information sharing.

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