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Archives | (April 2003)
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FEDERAL FRANKENSTEINS: PART TWO SCIENTIFIC AMBITION ECLIPSES ETHICS
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------------------------------------------------------------------ Page 6 of 6 THE HUMAN COST OF ARROGANCE The combined death toll of Protocols 126 and 681 is 24 – two dozen needless fatalities – two dozen unwitting victims. What is most disturbing is not the fact that patients died in the course of experiments intended to develop therapies that might save them. This is an unfortunate aspect of the search for new cures. Rather, what is disturbing is that the participants were put into life-threatening situations without their full knowledge and consent – that researchers in the mindless pursuit of their goals discounted the value of human life. Even more disturbing is the fact that what happened at the Fred Hutchinson Cancer Center is not an isolated example of abuses at some of our nation’s most prestigious research institutions. At the University of Pennsylvania, 18-year old Jesse Gelsinger died when researchers changed the rules for their experiment after failing to tell him that there had been serious reactions in several previous research subjects. At Johns Hopkins University, a 24-year old young woman died in what was supposed to be an innocuous experiment. The doctors running the experiment had failed to adequately research the adverse effects of the drug they were testing. In a lawsuit concerning another Johns Hopkins study which was measuring lead levels in children, a court chastised the institution for knowingly endangering their health. At the University of Kansas research on an experimental cancer vaccine was suspended after the discovery of numerous deficiencies in the production and monitoring of vaccine purity among other things. The prestigious Harvard School of Public Health was cited by the Office of Human Research Protections for failing to obtain proper informed consent for study participants in an experiment being run in China. Investigators questioned the fact that handwriting on all of the informed consent documents appeared identical. The list goes on and on, but in every case there is a common theme: patients enrolled in human trials are not being told the truth. They are not told that in 95% of phase I trials there is no medical benefit to the patient. They are not being told of potentially life-threatening risks they face. They are not being told of financial conflicts of interest. They are not being told about other, safer alternatives. As if to add insult to injury, most of these trials are being funded by the taxes paid by the very people who ultimately become their victims! It’s important to conduct medical research. But it’s just as important to do so in an ethical and open fashion. Many people are willing to take risks if it will bring benefit to others – but they should know what the risks they are undertaking really are. To do otherwise is to fall into the same trap of arrogance that ultimately destroyed Mary Shelly’s fictional researcher in her classic book “Frankenstein,” and to create human suffering instead of alleviating it. |
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