Tuesday, April 05, 2011

who owns your disease ?

No one can patent a human being. Not yet anyway. But there are plenty of other items or products, which you might otherwise consider "natural," that may be lawfully patented.

Medical researchers use laboratory-grown human cells to learn the intricacies of how cells work and test theories about the causes and treatment of diseases. The cell lines they need are “immortal”—they can grow indefinitely, be frozen for decades, divided into different batches and shared among scientists. In 1951, a scientist at Johns Hopkins Hospital in Baltimore, Maryland, created the first immortal human cell line with a tissue sample taken from a young black woman with cervical cancer. Henrietta Lacks was a black tobacco farmer from southern Virginia who got cervical cancer when she was 30. A doctor at Johns Hopkins took a piece of her tumor without telling her and sent it down the hall to scientists there who had been trying to grow tissues in culture for decades without success. No one knows why, but her cells never died. Henrietta’s (HeLa) cells were the first immortal human cells ever grown in culture. They were essential to developing the polio vaccine. They went up in the first space missions to see what would happen to cells in zero gravity. Many scientific landmarks since then have used her cells, including cloning, gene mapping and in vitro fertilization. HeLa cells were the first human biological materials ever bought and sold, which helped launch a multi-billion-dollar industry.

When Dan and Debbie Greenberg’s son was born with a deadly genetic disorder, the Homewood couple vigorously campaigned to help find the cause, even donating autopsy samples after he died. Eventually, the doctor they assisted uncovered the lethal gene—and then, to the Greenbergs’ amazement, quietly patented it. The Greenbergs had two babies with Canavan disease, an inherited brain disorder that usually kills in childhood. In the 1980s, the Greenbergs persuaded a doctor to try to find the gene that caused Canavan. Along with dozens of other families, they gave him money and samples of blood, urine, and tissue—even autopsy samples after their first child died. To everyone’s amazement, the doctor identified the Canavan gene in 1993.

A triumphant ending—until the families discovered that the doctor and his employer, Miami Children’s Hospital in Florida, had patented the gene. The implications left the families shocked: The hospital had dominion over who could use the gene and how—from researchers who wanted to use it to find a cure for Canavan, to lab directors who wanted to administer carrier or prenatal tests. It could profit off the gene, too: By one estimate, the hospital is earning about $375,000 a year from charging royalties on every test involving the Canavan gene. Miami Children’s Hospital would not allow any further testing by labs without a license from the hospital. The free testing at Mount Sinai would have to be discontinued. What’s more, the patent empowered the hospital to charge a royalty every prenatal or carrier test performed.

The commercialization of the gene infuriated the Greenbergs and the other families who had made such painful, personal contributions to its discovery. After unsuccessfully negotiating with the hospital, they filed a lawsuit. “I gave myself and my son and anything [the doctor] wanted to help wipe out this disease,” says Frieda Eisen of New York, whose son, Jacob, had Canavan. “I thought it was more of a donation for the common good of mankind, not for a hospital to profit on. Jacob was as much a part of this discovery—all the children were—as the hospital. Why should they make money on my child, on everything my child donated?”

What’s galling to Dan Greenberg and the other plaintiffs in the lawsuit is that there are any restrictions or royalties at all. “To me, a gene is like a raw material,” Green­berg says. “You can’t patent iron ore. You find it in the ground; it’s there; it’s a natural product on earth. Well, the genes in my body are also a natural product. And for somebody to be able to prevent anyone from using this raw material, even from doing tests on it—that’s what I just think is terrible and wrong.”

Unfortunately for the Greenbergs, there has been legal precedent for patenting a gene since a landmark 1980 Supreme Court ruling, which established that living organisms altered or isolated by “the hand of man” could be patented, provided that the in­ventor did something new and useful with the discovery. Since then, about 500,000 gene patents have been granted or are pending, according to the advocacy group GeneWatch UK.

Taken from here and here

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