Title : A Congressman, A CDC Whisteblower And An Autism Tempest In A Trashcan
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A Congressman, A CDC Whisteblower And An Autism Tempest In A Trashcan
A Congressman, A CDC Whisteblower And An Autism Tempest In A Trashcan Emily Willingham ContributorIn what autism-vaccine causation believers are promoting as a "bombshell," U.S. Congressman Bill Posey (R-FL), shared the following quote on the House floor last month:
At the bottom of Table 7 it also shows that for the non-birth certificate sample, the adjusted race effect statistical significance was huge. All the authors and I met and decided sometime between August and September ’02 not to report any race effects forthe paper. Sometime soon after the meeting, we decided to exclude reporting any race effects, the co-authors scheduled a meeting to destroy documents related to the study. The remaining four co-authors all met and brought a big garbage can into the meeting room and reviewed and went through all the hard copy documents that we had thought we should discard and put them in a huge garbage can. However, because I assumed it was illegal and would violate both FOIA and DOJ requests, I kept hard copies of all documents in my office and I retained all associated computer files. I believe we intentionally withheld controversial findings from the final draft of the Pediatrics paper.
Now becoming widely known as the “garbage can quote,” the scenario it describes appears intended to conjure a group of people closeted in a windowless room stopping just short of building a trash fire to destroy evidence. The alleged “hard copies” in this case are related to a study published in 2004 showing no link between autism and the MMR vaccine in a population of Atlanta schoolchildren.
The person to whom the quote is attributed, William W. Thompson, is one of the authors on that study. Thompson has since said that the study showed an increased risk for autism among African-American boys who received the MMR but that the study authors decided not to publish that information.
Recent analyses of the data—which seem to have survived the garbage can—do not suggest this conclusion. As Jim Frost, the statistician who evaluated the 2004 paper and reanalyzed the data in the above links, noted:
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The criticism that the study discarded data from African American subjects just doesn’t hold water. No data was discarded. For the subjects who were linked to birth certificates, the researchers performed additional analyses. In this light, I see a careful observational study that assessed the role of potential confounders.
Three of the other study authors—Frank DeStefano, Marshalyn Yeargin-Allsopp, and Coleen Boyle—are still with the CDC, and the remaining author, Tanya Bhasin, is no longer with the agency.
The events described in that quote occurred between “August and September '02.” In 2002—and well before that time—data and analyses weren’t retained only in hard copy versions. Indeed, hard copies of anything were and are fairly irrelevant for record-keeping, and scientists tend to rely on well-backed-up digital versions for archiving.
The idea that a group of scientists working for the US government in 2002 would somehow think that they could conceal data by discarding hard copies of anything defies belief and makes no sense given that the data were still available from the CDC. This isn't fiction film noir--it's a multilevel bureaucracy with multiple levels of data backup, archiving, and storage. Digital copies of data are absolutely critical for protecting data integrity, per the US Department of Health and Human Services’ Office of Research Integrity.
Generally speaking, enough data should be retained so that the findings of a project can be reconstructed with ease. While this does not mean that a project needs to retain all the raw data that were collected, relevant statistics and analyses from this data should be saved, along with any notes or observations.Protecting data integrity • Record the original creation date and time for files on your systems. • Use encryption, electronic signatures, or watermarking to keep track of authorship and changes made to data files. • Regularly back up electronic data files (both on and offsite) and create both hard and soft copies.
Indeed, in 2003, National Institutes of Health Guidelines for a data archive were that the data should be machine readable. The CDC’s 2003 policy on data records and sharing is available here and details the balance between retaining records already available elsewhere and maintaining personal privacy. This balance came into play later in the story of these data.
A decade after the 2004 paper was published, author Thompson set off an intense online controversy after unloading his concerns about this study to Brian Hooker, a bioengineer at Simpson University, and delicensed doctor Andrew Wakefield, leading to Thompson’s being dubbed the “CDC Whistleblower.” Why he turned to these two men instead of opting for the usual, federally protected channels for whistleblowers is unclear.
Hooker obtained not-destroyed-in-a-trashcan data from the CDC to analyze for himself. He subsequently published a paper purporting to support the finding of increased autism risk for African-American boys who had the MMR, in which he notes in the methods that “Cohort data were obtained directly as a “restricted access data set” from the Centers for Disease Control and Prevention (CDC) via a Data Use Agreement” (italics mine). That paper has been retracted.
When I reached out to Thompson for comment about the quote that Posey attributed to him, he replied only that he is having no direct communication with reporters at this time.
In lieu of a response from the other authors who remain at the CDC, CDC spokesperson Tom Skinner provided me by email with the following comment:
CDC is aware that employee Dr. William Thompson has raised concerns regarding an article he co-authored that was published in 2004 in Pediatrics. Consistent with CDC’s existing policies and procedures, the agency, through its Office of the Associate Director for Science (ADS), and in coordination with the HHS Office of Research Integrity, is reviewing these concerns. The agency will provide further information once the review is completed.
In response to my follow-up question about when the review might be completed, Skinner replied, “in the coming weeks or months.”
Because of considerable online speculation regarding the source of the quote Posey cited on the House floor, I also reached out to the Congressman’s media relations office. Posey spokesperson George Cecala confirmed that the source of the quote is a set of documents that Thompson provided through his attorneys to Posey’s office last August, around the same time that Thompson’s attorneys released a widely disseminated statement that has been interpreted in wildly different ways. According to Cecala, “those are Thompson’s words,” quoted from the materials that Thompson’s attorneys provided Posey.
Cecala says that the documents in question will be distributed only to members of Congress and will not be made available otherwise until if and when a hearing is held.
The reasons for Posey’s specific interest in this issue are murky. David Gorski, who blogs at Respectful Insolence, suggests:
Posey is a man who has been on the side of the antivaccine fringe for quite some time. Heck, he even appeared at the antivaccine quackfest Autism One in 2013 as part of a “Congressional panel”! He even introduced legislationthat’s gone nowhere requiring the CDC to do a retrospective “vaccinated vs. unvaccinated” study. As I put it, Posey appears to be vying to take over the title of most antivaccine legislator in the U.S. Congress since Dan Burton retired. Not surprisingly, he has received not-insubstantial donations from prominent members of the antivaccine movement...
When I reached out to the four authors who are still at the CDC, the only response was the statement from the agency’s press office and Thompson’s statement. I have been told, however, in the course of my outreach to various involved parties, after describing the quote and its apparent implications:
That’s not how they do things at the Centers for Disease Control.
Or anywhere else outside of a trashy 1950s crime novel.
I am a journalist who focuses on science and health. Read more about me here and find me (too often) on Twitter.
I've written for the Washington Post, Scientific American, San Francisco Chronicle, Everyday Health, Forbes, Slate, Grist, The Scientist, MIT Tech Review, and American S...
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