Best selling author Michael Crichton warned in last Friday's Wall Street Journal (no link available) that people's cells and body substances are no longer necessarily their own, once removed from the body. Scientists can use your cells and blood to conduct research upon, and if they are fortunate, develop into medical products that will make them billions. And you have no right, apparently, to stop them or to share in the wealth that were, in part, generated by your body parts.
But what about the terms of consent agreements? Apparently, courts often refuse to enforce limiting terms put in to protect patients. This matter arose most recently in a case out of Washington University in Missouri. Prostate cancer patients had agreed to allow their tissues to be used in research. But, Crichton writes, a court refused to enforce the limitations in the consent forms they signed! "The decision surprised many. As a recipient of federal funds, Washington University was required to follow the federal regulations on informed consent for tissues received from patients. This included acknowledging in writing that the tissues would be used only for prostate research, that patients had the right to withdraw from the study at any time, and to have their tissue samples destroyed upon request.
"However, Judge Limbaugh ruled that patients had no such rights. In his view, the right to withdraw merely meant the right not to contribute more tissues. The right to have the tissues destroyed meant only that the samples would be used anonymously. The guarantee that tissues would only be used for prostate research could be ignored, and WU was free to use the tissues for any purpose whatever." So once again, words become meaningless as definitions are changed to suit desired ends.
Crichton's conclusion illustrates the growing power of the Science-Industrial Complex, in which universities are becoming almost despotic in their drive to make fortunes through biological research unfettered by societal-desired ethical constraints. He writes: "Research universities around the country greeted the ruling with unseemly enthusiasm, and hastily joined forces to prevent a successful legal appeal. Although the National Institutes of Health and other federal centers conduct research under the federal guidelines, universities now claim that these rules are impossibly onerous and impede research. Unless researchers are allowed to do whatever they want, they warn patients, the flow of life-saving miracles will dry up.
"...For universities, perhaps the most damaging outcome may be the loss of confidence that patients feel in major centers of research and healing. There was a time when physicians were ranked just below Supreme Court justices. Those days are long gone. Our university hospitals and major medical centers still command respect. But the perception that they are businesses like any other is growing stronger every day. Except, they're not--they're non-profits, exempt from most of the rules and disclosures that are required of American businesses. In short, caveat patiens, keep copies of everything you sign, bring a lawyer to every medical appointment, and always, always watch your back."
Meanwhile, these warnings are generally ignored by the cheer leader media and lost amidst the torch parades in which everyone yells, "CURES! CURES! CURES!"