Transparency in brain studies sought
By Mar-Vic Cagurangan
Variety News Staff
A GUAM neurologist said yesterday local leaders must seek the reestablishment of a research center on island, and demand a review of and transparency in studies on Lytico-Bodig and other brain diseases affecting local residents.
Dr. John Steele, medical director of the Guam Memorial Hospital’s Skilled Nursing Unit, said he agrees with University of Guam researcher Dr. Luis Szyfres that the local community must have active participation and access to pertinent information relating to the results of studies that have been going on for over 50 years.
“Dr. Szyfres is an experienced and responsible researcher. He has drawn attention to these problems and it’s important to address the concerns he has raised about the project,” said Steele, who is doing independent research on neurodegenerative diseases on Guam.
On Sunday, Szyfres said UOG tried to block his efforts to publish his draft report on brain diseases, but UOG denied the allegation.
“I just had a long hour-and-a-half talk with Dr. Syzfres. I told him that I would post his paper on the UOG Web site when he had finished it. I want to be clear that UOG is not trying to censor information,” said Cathleen Moore-Lin, UOG’s marketing and communications director.
The official research on Lytico-Bodig on Guam is being conducted by UOG’s Micronesian Health and Aging Studies Institute, in partnership with the University of California in San Diego through a $10.6 million grant from the National Institute of Health.
Steele, however, said no one from Guam has access to the information related to the studies currently being conducted by UOG and UOC.
“The project is neither regulated nor responsible to Guam and it does nothing to advance or improve the needed practice or research on this island,” Steele said.
But Dr. Douglas Galasko, the scientist for the Micronesian Health and Aging Studies Institute, said scientific publications have appeared about brain disorders on Guam from 1950 to 2006 and that materials related to the research are being distributed. He also said UOG holds information meetings for families participating in Lytico-Bodig studies.
Steele began doing research on a similar neurodegenerative disease called progressive supranuclear palsy in Toronto, Canada. He came to Guam in 1983 to study the Parkinson-dementia complex disease and became part of the NIH-funded research center, which was then stationed at GMH.
In 1990, NIH shut down the research center at GMH and moved the study venue to the Mayo Clinic in San Diego because the prevalence of the disease was then “beginning to decline.”
“They paid these mainland centers one-and-half-million dollars a year to investigate Lytico-Bodig but the research accomplishment has been unproductive for 15 years,” said Steele, who is doing independent research with an international network of scientists.
“There has been no understanding of the cause of Lytico-Bodig, and there has been no advance in the treatment. They have concluded that Lytico-Bodig is inherited,” Steele said.
Steele said NIH has advised the University of California that the grant would be cut off in May 2007, unless the research project shows progress.
Steele said the San Diego researchers have made a desperate effort to gather more materials by putting out a television advertisement urging sick elderly Chamorros and their families to sign a scientific research permission prior to their deaths.
“They have produced a very insensitive TV ad, but despite these efforts, very few patients and families have agreed to autopsies. If the San Diego researchers fail to come up with anything, the funding will stop in May 2007,” Steele said.
Steele urged Congresswoman Madeleine Z. Bordallo to request a review of the current project, and a new research initiative to be conducted on Guam.
“The current project has not contributed to medical development at GMH or on Guam. Knowledge is not provided to physicians, to patients or the community. Before the project receives new funding, I hope that NIH will agree to have a new research initiative done on Guam,” Steele said.
Meanwhile, activist Jose Garrido laments the local government’s detachment from the issue.
“The only people making noises about this issue are the members of the Chamoru Nasion. It is demoralizing that so many of our so-called leaders are highly educated yet so incapable in meeting head-on with the federal government and demanding an immediate clean-up of all military dumpsites left abandoned all over Guam,” Garrido said.
“There is a Chamoru word for people, especially leaders who think they are leaders but are worthless, incapable, ignorant, and completely mindless fools,” he added.
(The word is ‘UDU’ for the record)