TISSUE DONATIONS: More Patients Want Share of Profit
Patients who have donated tissue for research that ultimately proves financially rewarding for the scientists are increasingly questioning why they cannot share in the profits, the New York Times reports in a front page story today. Dr. Barry Eisenstein, vice president for science and technology at the Beth Israel Deaconess Medical Center in Boston, said, "The value of patients' tissues has potentially gone up enormously," but when the researchers patent the genes made up of the donated tissue, patients are rarely compensated. Hank Greely, a law professor at Stanford University, explained that the "rules of the game" of research seem to have changed. He said, "It used to be that when you were a research subject, you were doing it for free and you assumed that the people on the other side were doing it for free -- at least for academic research." But now, most research has some commercial interest, he said, adding that research subjects might think, "Look, I'm willing to do this for the good of humanity if everyone else is, too. But if someone on the other side is going to make billions of dollars, I want some, too."
No Free Lunch
Rebecca Eisenberg, a patent law expert at the University of Michigan, said: "The fact is that we rely on the private sector to develop diagnostic and therapeutic products, and the private sector is profit driven. People may contribute their tissue in the expectation that nobody is going to make a profit on it, but that's a little naive. There's no free lunch here." She added that when patients take their cases to court, the courts generally rule in favor of the person who "envisions what the [donated molecules] look like and identifies a practical use for them," not the patient. But such rules might contribute to the downfall of tissue donations, as some patients have become wary about donating their tissue and some have even demanded money up front or have written contracts stipulating what they are entitled to should they help scientists find genes. Eisenberg said, "I hate to create incentives that would lead people to get greedy. I am worried that there are just too many mouths at the feeding troughs of pharmaceutical products" (Kolata, 5/15).