MELISSA BLOCK, HOST:
This is ALL THINGS CONSIDERED from NPR News. I'm Melissa Block.
AUDIE CORNISH, HOST:
And I'm Audie Cornish. Biologists have been struggling with how to handle potentially dangerous discoveries; for example, research about germs or toxins that could be misused to make a bio weapon. Last year, scientists announced they'd found a new form of the toxin botulinum. It's the most poisonous substance known.
BLOCK: Importantly, they said this new toxin could not be neutralized by existing treatments so the researchers did something unusual for biology. They kept key details secret. The idea was to keep the information out of the wrong hands.
CORNISH: But an investigation by NPR's Nell Greenfieldboyce shows it also prevented government labs and legitimate researchers from working to protect the public.
NELL GREENFIELDBOYCE, BYLINE: This story starts with a baby, a very sick baby who had infant botulism. Scientists at a California lab isolated the bacterial strain that caused this baby's illness. And a few years ago, they team decoded the gene for its toxin.
LEONARD SMITH: And it turned out to be something completely different than was ever identified before.
GREENFIELDBOYCE: Leonard Smith is an expert on toxins at the U.S. Medical Research Institute of Infectious Diseases at Fort Dietrich in Maryland. He says the head of the California lab alerted the federal government and came to a meeting to brief officials from agencies responsible for public health, national security, law enforcement.
SMITH: And so sitting around the table, I think this was the request of everybody from the government, was can you provide us with the strain?
GREENFIELDBOYCE: Having the bacterial strain was essential to see if stockpiled antitoxins and vaccines already in development would be enough to protect against this novel toxin.
SMITH: And I think that started the problem because Dr. Arnon was very reluctant to release it.
GREENFIELDBOYCE: Dr. Arnon is Dr. Steven Arnon, a botulism expert at the California Department of Public Health. The department said he would not be available for an interview. But NPR obtained his emails through a public records law. Emails Arnon received from federal officials reveal their frustration as months and months and months went by and he didn't provide the strain.
The Centers for Disease Control and Prevention requested it in 2011 and only just got it this January. Robert Tauxe is deputy director of the division that handles botulism at the CDC. He says until very recently, they've had no way to answer basic questions, like how this really differs from other forms of the toxin and whether we need new defenses.
ROBERT TAUXE: Will the existing antitoxin that we have here in the United States protect against it or not? We don't have the answers to those questions now.
GREENFIELDBOYCE: It wasn't just government scientists. The small community of botulinum toxin experts around the world was also shut out. Arnon's team did announce their discover last October in the Journal of Infectious Diseases, but the journal's editors let them deviate from standard scientific practice. They did not include the genetic sequence for the toxin, which other researchers would need to make or study it.
The journal editors wrote that this was done following Arnon's government consultations. Tauxe at the CDC says federal officials did not ask for that.
TAUXE: In general, we support publishing sequence data to allow scientists to independently analyze and confirm the scientific findings. So we didn't recommend that the sequence information be withheld.
GREENFIELDBOYCE: In response to questions from NPR, the California Department of Public Health released a statement this week saying that while it had indicated to the media that the decision to withhold data was made at the behest of federal agencies, quote, "we know now that this is not the case."
Since the incomplete research reports were published, botulinum toxin experts have grown increasingly dismayed. Some have asked Arnon to share the genetic data or the strain so that together they can learn more about the potential risk. But he's refused. One researcher who's asked is Andreas Rummel of the Hannover Medical School in Germany.
ANDREAS RUMMEL: And he basically pointed out that I should go to Google and make a search for Iran and botulinum neurotoxin.
GREENFIELDBOYCE: The implication was that Arnon would not share because the toxin could be weaponized in places like Iran. Rummel doesn't buy that argument for technical reasons. Leonard Smith, at the U.S. Army lab, describes himself as Arnon's friend. Asked if Arnon's fears were warranted, he said he didn't know.
SMITH: He didn't want to be accused of putting information out there that could come back and harm the United States and, you know, I have to respect his conviction and judgment on that.
GREENFIELDBOYCE: This episode reveals how, more than a decade after the anthrax attacks, there are still major questions about how to balance scientific openness with the need for security. Arturo Casadevall is a microbiologist at Albert Einstein College of Medicine in New York. He and other editors of science journals are now calling for the federal government to set up a committee that would review worrisome papers and give advice on what to publish.
ARTURO CASADEVALL: Editors are running into more and more papers in which there are concerns. And this is being handled ad hoc inside the journals.
GREENFIELDBOYCE: He says without some standard process...
CASADEVALL: It's possible that we're going to make mistakes both ways, that is putting out information that shouldn't be out or withholding information that should not.
GREENFIELDBOYCE: And he says there needs to be some mechanism to make sure that any information kept secret will be shared with researchers who want to advance science and protect the public. Nell Greenfieldboyce, NPR News.