John L. Moore, a leukemia patient who lost a historic property rights battle in which he claimed he deserved to share in the profits from an anti-cancer drug derived from cells taken from his spleen, has died. He was 56.
Moore died in a Seattle hospital Oct. 1 after undergoing an experimental treatment for his disease.
Moore, who spent a decade campaigning for patients' rights, was near death in 1976 when diagnosed with hairy cell leukemia, a rare and potentially fatal form of cancer. Concerned that Moore's dangerously swollen spleen might burst, surgeons at UCLA Medical Center removed it.
Within days, Moore's doctors were amazed to discover that his blood profile had returned to normal. His disease remained in remission until 1996.
When Dr. David Golde, a UCLA researcher, examined Moore's spleen, he found that it contained unique blood cells that produced a type of protein that stimulates the growth of white blood cells that can help fight infections.
Using new biotechnology, Golde and other researchers developed the cells into a replicating cell that makes the protein in large quantities.
In 1984, the regents of the University of California patented the cell line, dubbed "Mo," and named Golde and research assistant Shirley Quan as the inventors.
Once he learned of the patent, Moore filed a lawsuit seeking a fair share of the potential profits from products or research derived from the "Mo" cell line.
Doctors Accused of Concealing Truth
Moore, who said he had been repeatedly asked to return to UCLA Medical Center from his home in Seattle for blood tests, alleged in his lawsuit that he was treated for seven years in a way that suggested the UCLA physicians were deliberately trying to conceal the truth from him.
"Without my knowledge or consent, the doctors and the research institutions used a part of me for their own gain," Moore told the Seattle Post-Intelligencer in 1990. "They stole something from me."
Moore's claim was rejected in Los Angeles Superior Court. But in 1988 the unprecedented case gained wide attention when a state Court of Appeal ruled that a patient's blood and tissues are his personal property, and he may have a right to share profits on commercial products genetically engineered from them.
Scientists and pharmaceutical firms, however, maintained that the ruling threatened to undercut biomedical research that would save patients in the future.
In 1990, the state Supreme Court agreed. Allowing patients to sue over their cells, the justices said, would create a "litigation lottery" for any scientist who used blood or tissues in his or her research.
The court acknowledged, however, that "a physician who is seeking a patient's consent for a medical procedure must . . . disclose personal interest unrelated to the patient's health, whether research or economic, that may affect his medical judgment."
Moore later negotiated what he called a "token" settlement with UCLA that covered his legal fees based on the fact that he wasn't informed and hadn't agreed to the research.
In 1991, the U.S. Supreme Court also rejected Moore's claim over the profit issue, saying that a hospital patient does not own rights to tissues taken from his body, even if they prove valuable to scientists.
In 1994, Moore took his campaign for patients' rights to Brussels, where he campaigned against a proposed law seeking to deny individuals any right to share in money made through the use of their genes.
"He was very adamant about the fact that patients should know about what's happening to their bodies or their body parts," said Kara Saxby, Moore's daughter. "He was always very passionate about everything he did."
Moore, who lived in the Seattle suburb of Kent at the time of his death, was born in Seattle and earned a bachelor's degree in history from Western Washington University.
Moore Had an Eclectic Career
In a varied career that included starting a college in Guadalajara, Mexico, he worked as a surveying engineer on the Alaska oil pipeline, served as an alcoholism counselor and photographer for the city of Anchorage, ran a worm farm in southwest Washington and sold seafood. He also served as a seltzer and beer distributor and most recently worked in sales and marketing for a Seattle Internet company.
In addition to Saxby, Moore is survived by his wife, Chaweewon; daughter Patrina Price of Kent; sister Camilla Nakano of Burien, Wash.; and a grandson.