ABLENews Extra

              Severing the OncoLink?

Philadelphia--His 3 1/2-year-old daughter's leukemia led E. Loren Buhle
Jr. to look up the disease at the library. The material he found offered
bleak prospects but was out of touch with current treatments and
research.

So Buhle, an assistant professor of medical physics in radiation
oncology, sought out colleagues at the University of Pennsylvania
Medical School, combed computer databases, and, ultimately, envisioned a
way to give others up-to-date information, advice, and solace about
cancer.

Amanda is 8 and has been out of chemotherapy for two years. But her
father now finds himself in trouble, embroiled in a struggle with the
Penn Cancer Center over what information should be made available to the
public through computers.

At stake is more than the future of OncoLink, an electronic library that
Buhle helped launch. OncoLink debuted in March on the Internet and
receives some 10,000 calls a day.

The case pit Buhle's belief that controversial subjects should be aired
quickly and allowed to thrive or die in the light of public scrutiny
against Penn's view that as one of 27 federally designated comprehensive
cancer centers in the nation, it must ensure postings are responsible.

"There's no other source of uncensored information," Buhle said. "The
issue here is, is it censored?'

His department chairman, Dr. W. Gillies McKenna, says Buhle simply
hasn't followed editorial policies that require posted articles to
receive approval from two co-editors, Drs. Joel W. Goldwein and Ivor
Benjamin. He compares the process to peer review used by printed medical
journals.

"I realize that there's a culture on the Internet that's opposed to
censorship in any form," McKenna said. "But in my mind there's a
difference between being an editor and being a censor."

Under Buhle's guidance, cancer patients had access to traditional forms
of research from the National Cancer Institute, Penn researchers,
pharmaceutical companies, foundations, and other sources.

But they also had access to information about experimental research,
such as a National Institutes of Health inquiry into the use of shark
cartilage as a cancer treatment.

"That material was deemed inappropriate and irresponsible. I'm not
saying that it works or it doesn't work...To say it's an issue we can't
discuss at all, I have some problems with that,' Buhle said.

McKenna declined to discuss the merits of specific topics, saying his
concern was for the process.

"We felt we had certain responsibilities to the users of our resource to
stand behind the material we put here," he said.

Dr. Michael Bookman, director of medical information management and
director of medical gynecologic oncology at Fox Chase Cancer Center in
Philadelphia, said OncoLink has not drifted in any areas he considers
inappropriate.

"I think that all the information I've seen on there has been very
balanced," he said.

On December 9, McKenna wrote to Buhle that he must provide full access
to all areas of OncoLink to Goldwein and Benjamin and stop posting items
without their consent. Three days later, OncoLink went dark for 22
hours. McKenna says there was a computer crash during a backup
procedure. Buhle says he doesn't know what happened, because he was
somewhere else at the time.

But the interruption alarmed OncoLink users, who fear Penn will purge
material they value and delay or suppress information that could bring
relief to cancer patients or open new treatment options for physicians
and researchers.

"Are they deaf, stupid, and blind?" a Dutch survivor of Non- Hodgkin's
lymphoma wrote in E-mail to Buhle. "Can't they see that OncoLink is
helping thousands of people?"

[Cancer Network Battles for Information, Morning Herald, 12/23/94]

ABLEnews Editor's Note:  To reach OncoLink on the Internet use
                         the World Wide Web at http:
                         //cancer.med.upenn.edu/ or gopher
                         cancer.med.upenn.edu80

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