GENEWATCH
 
CASE IN POINT: THE NIH’S BIOBANK BREACH
By CRG Staff
 
In June 2006, Dr. Trey Sunderland, Chief of the National Institutes of Health's Geriatric Psychiatry Branch, invoked his right not to testify at a Congressional hearing. Sunderland stood accused of ethics violations, and would later plead guilty to federal charges, for secretly delivering spinal fluid samples from NIH freezers to Pfizer in return for nearly $600,000 in consulting and lecture fees. Sunderland provided Pfizer with not only the tissue samples - 3,000 in all, from 538 research participants - but with associated clinical data as well.

Sunderland kept quiet at the Congressional hearings, but others didn't:

"Today we look at how NIH protects precious assets, the human tissue samples that are at the core of the agency's research mission. Once again, after extensive investigation, we have found deeper concerns regarding human tissue samples at NIH than first believed. Incredibly, we have found a lack of a centralized database and oversight at NIH that leaves NIH labs vulnerable to theft and abuse. We know from previous investigations that NIH has an inventory system for its property, but NIH tells us it has no centralized inventory system that could tell the NIH Director how many vials of tissue are in freezers at a particular institute. It appears that the agency can account for its paper clips better than its invaluable research material."

- Rep. Joe Barton, R-Texas

"I am concerned that it appears as though the NIH cannot account properly for human tissue samples in its possession or for the data generated by the use of those samples in biomedical studies.

... What is most worrisome to me is the abuse of patients' trust. These people, victims of Alzheimer's disease or their relatives, as well as some courageous individuals who have participated in the control groups, have submitted periodically for a decade or more to time consuming and painful spinal taps. They believed that the decisions regarding the use of these samples were made by the best scientific judgment in the country.

It is possible that only such an esteemed institution as the NIH could have enlisted these volunteers and convinced them to return again and again to give spinal fluid. Yet, we now know that some of these committed patients were never told that the experiments that used their samples had been aborted. Others were never given the results of completed efforts. Nobody was informed that samples left over from certain experiments were shipped from the NIH to private drug companies. Patients were not informed that there was a chance that their names, names that were supposed to be divorced from the samples in the event of them being used for research, could be inadvertently revealed. This did in fact occur when one of the Sunderland shipments to Pfizer revealed patient names to company researchers."

-Rep. Diana DeGette, D-Colorado
 
 
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