In a news story today Lori Andrews, director of the IIT Institute for Science, Law and Technology, raises a key point: The judge ruled that Washington University owned the samples in part because the consent forms were printed on Washington University letterhead, despite the fact that those forms said the patients were giving the tissues to Catalona [or in some cases, Catalona and his colleagues]. She calls the ruling, "a big setback for patients' rights," because it means universities can use samples for research "even over patients' objections. "
Washington University suggests that if patients control their tissues, it will have "horrible implications," because donors could refuse to donate to certain recipients. This is something the judge mentioned in his ruling. He said:
"Allowing [a research participant] to choose who can have the sample, where the sample will be storied, and/or how the sample can be used is tantamount to a blood donor being able to dictate that his/her blood can only be transfused into a person of a certain ethnic background, or a donated kidney being transplanted only into a woman or man."I find that absurd: Giving patients the right to determine what's done with their tissues and which scientist does research on them does not equal discrimination and determining who receives the benefit of that research. Preventing patients from controling their tissues doesn't change the fact that someone decides who gets the sample, how its stored and used, and who benefits from it -- it just leaves those decisions to scientists, universities and biotech companies instead of patients. And there's no evidence that they'll make better decisions about tissues use than patients who, on the whole, want to see medicine advance (in fact, there's plenty of evidence that patient involvement can help advance science, just look at Ted Slavin, or the story of Sharon Terry -- how and why she became a co-patent holder on the gene found in her childrens' tissues, and the positive impact that had on research).
But regardless, at this point people have the right, legally and ethically, to determine who gets their tissues and organs (just read The National Organ Transplant Act). I'm extremely sensitive to the issue of race and medicine (I am writing a book that deals with it). But this feels like a case of playing the discrimination card inappropriately: By this judge's logic, if I want to give my kidney to my mother, and I sign a form saying so on Washington University letter head, then Washington University owns my kidney, doesn't have to give it to my mother, and I'm wrong for trying to give it to her? That's crazy talk.