- The Washington Times - Tuesday, May 31, 2005


The National Institutes of Health apparently has reversed its position on the fate of a collection of brains from people afflicted with a condition similar to mad cow disease, saying in a letter to a U.S. senator that it will not destroy the collection.

An NIH official earlier said the brain collection, which consists of samples from hundreds of people who died from the brain-wasting illness called Creutzfeldt-Jakob disease (CJD), could be discarded if another entity does not claim it.

That sparked an outcry from patient-advocacy groups, consumer watchdogs and scientists, and the agency appears to have backed away from that course.

“All the brains and other tissues with potential to help scientists learn about CJD are, and will continue to be, conserved,” Story Landis, director of the National Institute of Neurological Disorders and Stroke, which oversees the brain collection, wrote in a letter to Sen. John Cornyn, Texas Republican.

Mr. Cornyn had inquired about the status of the collection in April.

In March, Eugene Major, acting director of the basic neuroscience program at the NIH, said that the useful portions of the collection had been doled out to scientists and that the rest of the samples had “very little remaining value” and could be destroyed.

Scientists say the collection, which dates to 1963, is invaluable for research on CJD and similar diseases and could provide insight into treatments. There is no cure for CJD, and patients typically die within a year of the onset of symptoms.

“Absolutely, the collection is worth keeping,” said Bruce Johnson, a former NIH scientist who said he had been told that the collection would be destroyed in two years if no one took the samples from the agency.

The Memorial Institute for Neurodegenerative Diseases Inc., a nonprofit organization made up of more than 40 researchers from several countries, offered to take the collection off NIH’s hands more than a year ago but has not heard anything from the agency, said Harry Peery, INDthe institute’s executive director.

CJD belongs to a group of incurable and fatal diseases collectively known as transmissible spongiform encephalopathies, or TSEs, that includes mad cow disease in cattle, chronic-wasting disease in deer and elk, and scrapie in sheep.

Despite Miss Landis’ assurance that the collection will be preserved, some family members of the patients who donated their brains to the NIH are still skeptical.

“The tissues that are discarded are those that have either decayed to an extent that renders them no longer appropriate for research or those for which we do not have sufficient identification,” Miss Landis wrote in the letter.

Copyright © 2019 The Washington Times, LLC. Click here for reprint permission.

The Washington Times Comment Policy

The Washington Times welcomes your comments on Spot.im, our third-party provider. Please read our Comment Policy before commenting.


Click to Read More and View Comments

Click to Hide