Finding Research Balance
When Sen. Richard C. Shelby tucked a few words into a 4,000-page appropriations bill last October to require that “all data” produced by research involving federal grants be readily accessible to the public, his seemingly sensible provision went virtually unnoticed.
Now, however, as the White House Office of Management and Budget tries to implement the Alabama Republican’s law, it is hearing a chorus of protest from the scientific community. The National Academy of Sciences is rallying behind a bill by Rep. George E. Brown Jr. (D-San Bernardino) that would repeal the law altogether. Both approaches are extreme. The White House should find a middle course, implementing Shelby’s law in a way that encourages freedom of information while not jeopardizing patent and privacy rights. Even more important is the federal responsibility to protect the public health, which is sometimes at odds with corporate secrecy in biotech research.
While Shelby purports to champion public disclosure or “sunshine,” he sneaked his measure into law in the cloak of darkness, without any public discussion. His legislation, moreover, is half-shade, half-light, requiring academics who receive federal research grants to turn over all data but not requiring companies receiving federal research contracts to turn over any data.
The law was passed in response to the complaints of power company executives who wanted access to every scrap of data and every medical record used in a Harvard study that linked power plant emissions to health problems. Citing research subject confidentiality agreements, Harvard refused to release its data.
The scientific community sees Shelby’s law as the latest example of how scientists are harassed for expressing unpopular views--starting with Galileo, who was imprisoned in the 17th century for suggesting that the Earth revolves around the sun. Today, private companies are more subtly using the legal system. Researchers legitimately claim that they have the right to a zone of privacy. Academic scientists also are concerned that if the Shelby bill is implemented as written, private companies won’t want to collaborate with them.
Modern academics who want to keep their data private are not, however, in Galileo’s class. That’s why Congress, rather than simply repealing Shelby’s law, should work with the White House to ensure that key discoveries are shared openly and that the obligation is shared by corporate researchers. Public health agencies, for instance, should be able to obtain the genetic information they need to fight drug-resistant bacteria. But as a recent Times investigation by reporters Marlene Cimons and Paul Jacobs showed, they are being stymied by biotechnology companies that think all of their genetic discoveries are trade secrets, to be sold to the highest-bidding pharmaceutical company.
Part of the solution will have to come from the U.S. Patent Office. Patents are too often rewarded for the most basic discoveries: A company that parses out the genes of a certain worm, for instance, gets to “own” those genes. Patents should be rewarded only to scientists who can demonstrate the utility of a discovery. Conflicts like those raised by the Shelby bill will only grow as biotech comes up with ever more profitable applications. It’s essential that the government find a fair balance between the public need for scientific data and the private hunger to profit from it.
