By Sam Levin
By Jessica Lussenhop
By RFT Staff
By Keegan Hamilton
By Gavin Cleaver
By Sam Levin
By Sam Levin
By Sam Levin
Under Washington University policy, patents belong to the university, not faculty members. The university holds patents on more than 150 discoveries that were paid for with government grants, and about half of those have been licensed to private companies. Money from royalties and licenses are split three ways, with the faculty member getting 45 percent and the medical school receiving 40 percent. The remaining 15 percent goes to the university's Office of Technology Management, which markets discoveries to the private sector. Any transfer of research material from the medical school must go through the Office of Technology Management.
Catalona holds no patents registered with the federal government, nor is he listed as an inventor of anything with rights assigned to another individual or entity. In a 1998 interview with the St. Louis Business Journal, the doctor said he had not been "smart enough" to cut a profit-sharing deal with manufacturers of the PSA tests that became commonplace thanks to his research. If he had, Catalona told the Journal, he could have collected millions of dollars.
Piche chuckles at the notion that his client wasn't intelligent enough to realize the profit potential in his research. "I think that's an example of his humility, in the sense that he was smart enough, but that was not what he was thinking about," Piche says. "From everything I know about him, he's more interested in the product of the research: He wants to find a cure for cancer. I assume there's an ego element involved in that, but that's what drives him."
Piche allows that Catalona might realize royalties in the event he wins custody of the tissues and a profitable discovery is made from them. Northwestern University spokesman Charles Loebbaka declined to answer questions about the collection and who might have access to it if Catalona were to win his lawsuit, saying the university doesn't comment on pending litigation involving faculty members.
Conger's ten-year-old son Clifford suffers from cardio-facio-cutaneous syndrome (CFC), a rare genetic disease that causes mental retardation, skin disorders, facial disfigurement and heart problems. In an effort to help find a cure, she flew him all over the nation to various doctors who drew blood samples. She and her husband also donated blood. "I felt I was giving of my child and myself and my husband to promote research," Conger recalls.
Then she started thinking.
"How many times can you tap into these frail bodies and do this?" Conger says. "I didn't know it was going to be, 'Well, the blood is here for research here.' I don't have the time to get into lawsuits -- I teach full-time and I raise this child as a normal child. I thought, 'What else can we do? What would be Plan B that would help everybody, would help researchers at a different facility?'"
Plan B has turned into a specimen bank created and controlled by families whose loved ones suffer from CFC. Researchers with an interest in CFC must file proposals with the CFC Family Network, which reviews proposals with the help of independent doctors and decides which researchers will be granted access to specimens. So far the network has collected 42 samples -- a large number, considering CFC's rarity.
"We are the database collection for the world for this disease," Conger says. "Our organization owns the samples."
Families touched by CFC aren't alone. On October 14 the Genetic Alliance Biobank, a fledgling blood and tissue repository owned by a consortium of disease advocacy groups (including the CFC Family Network), officially incorporated in Delaware. The consortium hopes to draw on disease advocacy groups that will contribute samples and share the cost of banking them. The samples will be distributed to researchers who file proposals with the individual groups and pass muster with each group's scientific advisory board.
"The whole fight over human tissue as a commodity is not a good thing, obviously, because it isn't the way we want to think about human tissue," says Sharon Terry, president of the Genetic Alliance, a nonprofit umbrella organization for more than 600 disease advocacy groups. "But it's a very important part of research, and so definite lines need to be drawn, and ownership issues need to be taken care of."
Terry doesn't care if researchers, universities or biotech companies get rich from donated tissue. "We have ab-solutely no problems with the motivations and incentives that are already built into the system," she says. "Industry's looking for a profit. Academics are looking for promotions and papers. What we want to see is acceleration of research to an endpoint."
And to do that, the system for distributing parts of human beings needs to change, she says.
"It just made complete sense to us that if we are going to advance research, we should have the biggest lever in our hands, and that's blood and tissue."
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