Their Bodies, Our Selves
Who owns your body? Hint: It's not you.
Dr. William Catalona just wants his blood and tissue back. Internationally recognized for his research on prostate cancer, Catalona is about as close as one comes to medical celebrity (he's been called "urologist to the stars"). Patients and their families lavish gifts upon him: namely, the use of their blood and tissue, which he has used to research more effective treatments. "The Catalona Collection," thousands of tissue samples now sitting in freezers in Washington University in St. Louis, is the sum total of their bodily donations. It's also at the center of a recent push for Americans to claim ownership over their bodies and the products derived from them.
Catalona moved to Northwestern University Feinberg School of Medicine in Chicago in 2003, and he planned to take the Catalona Collection with him. He sent form letters to his donors, requesting permission to transport the samples, which he considers theirs, not his. Six thousand gave the green light. Before he could transfer the collection, Washington University stepped in, arguing that the donors' preferences were immaterial. According to the university, the patients don't own the tissue; it does. University regents sued to keep the collection, and won in March.
Catalona, with his patients behind him, is fighting the decision, and the Eighth Circuit Court of Appeals will hear the case a week from now, on December 13. Catalona's defense team points out that the consent forms only authorized research by Catalona, for the study of a life-threatening disease many of them were suffering from. The forms also gave them the right to withdraw their tissue at any time.
Washington University has hundreds of years of western legal tradition on its side, dating back to English common law. Historically, no one has a direct proprietary right in human body parts—least of all the people from whom those parts came. And patients looking for control run up against a highly resistant research community, who see mass chaos in the specter of patient control. Many in the medical community fear that ceding any ownership rights over tissue will lead, eventually, to patients buying and selling their own body parts. Patients who know the value of their tissue, after all, might demand payment for it; ova and sperm "donors" already do. "Selling organs," frets a recent piece in the New England Journal of Medicine, "might become a matter of right."
In the end, disputes of this kind always come back to John Moore's million dollar spleen. Twenty years ago, UCLA School of Medicine Dr. David Golde told Moore his leukemia-ravaged spleen would have to go, and Moore agreed to have surgeons remove the organ. For years afterward, Moore would fly from his home in Seattle to UCLA, where Golde would check on his progress and take samples of sperm, blood, and bone marrow aspirate.
Unbeknownst to Moore, his supposedly trashed spleen was teeming with biomedical treasure. Golde derived a commercial cell line from the disembodied organ, and proceeded to patent it. Eventually, Moore became suspicious at the steady stream of vague release forms he was being asked to sign. He investigated, caught Golde, and sued. In 1990, a California court ruled that Moore had no proprietary right to the blood and tissue taken from his body. By that time, Golde had sold the patent for $2 million.
Supporters of the Moore and original Catalona decision argue that patients must be prevented from controlling their tissue, lest the body be commercialized. There's only one wrinkle in this crisp legal separation between body and commerce: Only patients, it seems, are forced to mind it. "We already give property rights, but we give them to the doctor," says Lori Andrews, a professor at Chicago-Kent School of law, Director of the Institute for Science, Law and Technology, and widely quoted expert on biotechnologies. "We have a schizophrenic system."
As the Moore case clearly demonstrates, discarded tissue has gone from hazardous waste to precious resource, repurposed to serve the needs of medicine and industry. The tissue collected at routine doctor visits is of enormous value to researchers and biomedical firms. The patients from whom they are taken typically have no idea that valuable materials are being drawn, sliced, and extracted from them. And the tissue is valuable: a recent article in the New York Times put the value of the Catalona Collection at $15 million.
Andrews is optimistic. Courts, she says, are warming to the idea that people should own their DNA, whether or not it happens to be physically attached to them. The conflicts of interests here are hard to miss, and the perverse incentives highly disturbing: If patients have no say in the future uses of their tissue, doctors have little reason to be honest as they attempt to procure it. In extreme cases, doctors may engage in what Andrews calls "the strip mining of patients," taking an extra bit of blood here, an extra biopsy there.
Whether or not the Eighth District Court is moved by the threat of overzealous tissue harvesting, the opportunity to control valuable tissue won't be of much use until patients realize that tissue is worth controlling. Americans have yet to adjust to a world in which their bodies are factories for raw materials and windows to potentially damaging genetic information. In most cases, they are not so much being robbed of their tissue as giving it away, completely oblivious to its potential value. For the research community and biomedical industry who effectively take ownership of that tissue, the status quo is lucrative enough to be worth fighting for.
Researchers don't talk of profits of course, but of objectification and commodification. And they're right to note that their position has the weight of tradition behind it, though it's probably not a tradition worth embracing. Andrews points out that in feudal times, self-harm was illegal because it made one a less capable soldier for the state. The idea that average people didn't own their own bodies likely had nothing to do with the fear of commodification, and everything to do with the idea that those bodies belonged to someone else: the king. The replacement of a royal class with medical elites may be a sign of modernity, but it's hardly a sign of progress.
Kerry Howley is an associate editor at Reason.