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Federal scientists' stake in experiments disclosed

NIH makes good on vow from 2000

WASHINGTON -- Government scientists have collected millions of dollars in royalties for experimental treatments without having to tell patients testing the treatments that the researchers had a financial connection.

The personal royalties are legal, though the researchers developed the treatments at government expense. But the Health and Human Services Department promised in May 2000 that scientists' financial stakes would be disclosed to patients. The National Institutes of Health says it didn't implement a policy to order the disclosure until last week, after the Associated Press filed a Freedom of Information Act request.

"Quite frankly, we should have done it more quickly," said NIH spokesman John Burklow.

The nearly five-year delay means hundreds of patients in NIH experiments made decisions to participate in experiments that often carry risks without full knowledge about the researchers' financial interests.

"It's hard for patients to make an informed decision when they don't have all the information," said Bill Allison of the Center for Public Integrity, which monitors the ethics of government employees.

"When a doctor says, 'Here, try this experiment, it is safe, or it will help,' and the patient isn't aware he has a financial interest in the outcome of that treatment, it in essence is taking advantage of someone by not letting them have all the information," Allison said.

In all, 916 current and former NIH researchers are receiving royalty payments for drugs and other inventions they developed while working for the government. They can collect up to $150,000 each a year, but the average is about $9,700, officials said.

In 2004, these researchers collected a total of $8.9 million.

The government owns the patents and the scientists are listed as inventors so they can share in licensing deals with private manufacturers. In addition to the inventors' take, the government received $55.9 million in royalties for the same inventions and put that money back into research.

The arrangements can create concerns about conflicts.

Except for patent records and scientific journals, the patients have had no easy way of learning about the researchers' financial stakes.

That's because the NIH told doctors not to report royalties on their government ethics disclosure forms and did not require the royalties listed on patient consent forms until last week's policy.

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