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Groups Seek to Save NIH Brain Collection

Scientists, consumer groups, and patient-advocates have embarked upon efforts -- including petitioning members of Congress and seeking storage space at a Canadian university -- to prevent the National Institutes of Health (NIH) from destroying an irreplaceable collection of human brains from patients afflicted with a condition similar to mad cow disease.

As United Press International (UPI) reported last week, the NIH has begun shopping for a new home for its collection of brains, spinal fluid and other tissues from hundreds of patients around the world who died from Creutzfeldt Jakob disease (CJD) -- an incurable, fatal, brain-wasting illness. The collection dates back to 1963 and the consensus among scientists in this field is it is invaluable for research and could provide insights that might aid in developing diagnostic tests, treatments or cures for CJD.

NIH officials, however, maintain the remaining samples in the collection -- stored in some 30 freezers by the National Institute for Neurological Disorders and Stroke in Bethesda, Md. -- are of little value and may be disposed of if researchers or institutions do not come forward to claim them. Families of patients who died of CJD have reacted with outrage, concerned that the effort mounted to collect the brains in the 1st place has been all for naught. Several have contacted their respective members of Congress and urged them to step in.

"The brains and brain tissue were sent to NIH in good faith for future research and destroying them is an outrage," Terry Singeltary, a patient advocate in Bacliff, Texas, wrote in a letter to Sen. Kay Bailey Hutchinson, R-Texas, and several other members of the state's congressional delegation.

CJD belongs to a group of diseases -- called transmissible spongiform encephalopathies or TSEs -- that includes mad cow disease, chronic wasting disease in deer and elk, scrapie in sheep and several types of CJD in humans. There is no cure for CJD and it typically results in death within a year after the onset of symptoms. Consumer groups also are concerned and are considering taking steps to ensure the brain collection will be preserved. "This is outrageous," Michael Hansen, a biologist and senior research associate with Consumers Union in Yonkers, N.Y., told UPI. "Those brains are a critical resource for CJD science and they must be at a research facility.

How can we claim to be a scientific country if we're going to be throwing away an irreplaceable repository of the 1st evidence of these diseases?" asked Felicia Nestor, who serves as a consultant to Public Citizen.

There may be hope yet for the collection, however. Neil Cashman, an expert on TSEs at the University of Toronto's Center for Research in Neurodegenerative Diseases, told UPI he has been attempting to drum up support for acquiring the collection with his colleagues at the University of British Columbia in Vancouver -- where he plans to move this summer. "The goal would be to make it a resource for the world and make the tissues available to scientists who had a reasonable request," he added.

One brain in the collection, that of a French woman who died in 1971, may help provide clues about the origins of variant CJD -- a condition similar to CJD that humans can contract from eating beef products contaminated with the mad-cow pathogen. The 1st recognized case of vCJD occurred in 1995 in the United Kingdom, but an NIH scientist said he tested the French woman's brain in 2000 and found signs consistent with vCJD -- not CJD. French researchers currently are re-examining specimens from the case to determine if the woman was indeed infected with vCJD. If she was, it would suggest the disease began infecting people more than 20 years earlier than previously thought. Cashman said the case underscores the value of the NIH brain collection. "There is information locked up in these freezers that will be lost forever if this collection is destroyed," he said.
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