Informed Consent and "An Inconvenient Truth"

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Sandra Porter
I recently completed a long trip out-of-town, giving a presentation at a Bio-Link conference in Berkeley, and teaching a couple of bioinformatics classes at the University of Texas, through the National Science Foundation's Chautauqua program. The Human Subjects Protection Course Before I left town, I had to take a class on how to treat human subjects. It seems strange, in some ways, to be doing this now, several years after completing graduate school, but my experimental subjects have generally been plants, protozoans, and bacteria; with a few rabbits, rats, and mice thrown in as antibody factories or homes for trypanosomes; not humans. The NIH class was straightforward and even, surprisingly interesting. We were required to read information, answer questions, and review case studies. Happily, the ethical guidelines for working with human subjects are, for the most part, pretty reasonable. There are probably people who will disagree with me, but I thought the rules were fine and I was glad to learn that these protections are in place. There are three concepts that guide biomedical ethics: Respect for persons, Beneficence, and Justice. If I translate those into some quick rules for researchers, I come up with rules like these:
  • You can't do experiments on people without their knowledge.
  • Researchers are obligated to maximize benefits and minimize harm.
  • No one can participate in a study unless they understand what they are doing.
  • People who participate in a study must be treated with respect and their privacy must be protected.
  • A person who participates in a study can opt out and quit at any time.
It seems surprising that these rules would even need to put into writing since they all seem pretty obvious. But, the stories we read about the Tuskegee Syphilis study, the Nazi Experiments, the U.S. Government's Radiation Experiments, and the Willowbrook hepatitis study, demonstrate that we can't rely on all researchers to police themselves. Some people do need to see the rules in writing. If global warming was part of an NIH grant proposal, it would never be funded Traveling is always so educational. When I'm home, I only get to see movies that involve the Marx brothers. But, since I was in Austin, and away from my kids and their DVDs, I went with my friends to see "An Inconvenient Truth." I'm still having nightmares. I couldn't help watching "An Inconvenient Truth" and contrasting the well-established and highly rigorous enforcement of ethical rules for human subjects who are involved in NIH studies with our collective lack of ethics when it comes to global warming. This experiment we're conducting, in failing to control CO2 emissions, violates every one of the ethical principles that I learned about. How are the actions of our elected leaders maximizing benefits and minimizing harm? When did we get an opportunity for informed consent? Will we have a chance to opt out of the experiment? Global warming is a global scale experiment, but I don't think many people have any knowledge of what's going on. Even the non-scientist people who realize that global warming is happening, seem unaware of the consequences. (I confess, I didn't know much about the consequences before I saw the movie). The potential for melting the ice off of Greenland and raising the level of the oceans is pretty alarming. Combined with the potential impacts on ecosystems and increase in horrific storms, it seems unconscionable to ignore this threat. If I didn't have children it would be so much easier to be fatalistic about the whole thing, decide that there's nothing I can do, and stick my head in the sand. But I'm not going to do that. Go see the movie. Decide for yourself if you think this is an experiment that should be continued.

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