New rule forces release of taxpayer-funded studies

By James Freeman
Copyright 1998 Boston Globe
November 9, 1998


When your tax dollars pay for a scientific study, should you be allowed to see the results? Of course you should. And now you can, because of a little-publicized provision in the 1999 budget law.

You might wonder why Congress needed to write a law allowing you to see the data from research that you funded. Critics of the Environmental Protection Agency have been wondering the same thing.

Believe it or not, for two years the EPA has been refusing to release the data from a public health study conducted by Harvard University. That's right, a study about the public's health, not the effectiveness of smart bombs or a Department of Defense analysis of Saddam Hussein's top lieutenants.

Here's the story: In November 1996, EPA Administrator Carol Browner held a press conference to propose new regulations to make our air cleaner. Specifically, the EPA wanted to reduce emissions of chemicals that cause smog and so-called particulate matter, or PM in bureaucratese. These are tiny soot particles emitted by cars and factories. Reducing our emissions to EPA's desired levels could cost more than $60 billion per year, according to the Clinton administration's own estimates. To justify that kind of expense, EPA needed to demonstrate that America's air quality represented a genuine threat to public health.

Would new regulations be worth the new financial sacrifices? Even supporters of the EPA weren't quite sure. Dr. Barry Levy, president of the American Public Health Association, appeared on the Public Broadcasting System program "TechnoPolitics" to support the new regulations. But when asked whether the standards represented the best use of public health dollars, Levy called it "an open question."

EPA claimed that it had solid evidence that soot particles were killing people, pointing to a federally funded study conducted by Dr. Joel Schwartz and others at Harvard University's School of Public Health. There was just one problem - EPA wouldn't release the data, and neither would Schwartz.

The EPA said that even though federal dollars had paid for the study, releasing the underlying data was unnecessary because the results justified the new rules. Schwartz, for his part, told us that the confidentiality agreement signed by study participants prevented the release of the research data. When we asked for a copy of the agreement, Schwartz said, "I don't know how to find one," adding that it had been signed long ago. "God knows what file it is in," he said.

Harvard later sent PBS a copy of the agreement. It reads, "Your identity and your relationship to any information obtained by reason of your participation in this study of respiratory symptoms will be kept confidential and will not otherwise be disclosed except as specifically authorized by you."

The obvious solution: release the findings with names and distinguishing information removed. But EPA and Harvard chose not to make the results public. Harvard's Dr. Doug Dockery claims that even if you black out names, addresses and other details, the locations and times of deaths might reveal the identities of test subjects.

So on this critical national issue with tens of billions of our dollars at stake, EPA and Harvard said "trust us" on the data. EPA did say it would release the information to an independent panel to evaluate. But scientific skeptics are still waiting for a chance to check Schwartz's work.

Some members of Congress apparently grew tired of the delay, so they added an amendment to the omnibus budget bill requiring government agencies to release federally funded research data to anyone who submits a request under the Freedom of Information Act.

As for the Harvard study, there's no word yet on whether Carol Browner will claim researcher-client privilege.

James Freeman is senior producer of the PBS television program "TechnoPolitics."

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