Okay, this is a bit overdue but sometimes school and other things (ask me about renovating houses sometime) take over. But, in honor of my 7am ethics breakfast/discussion/mandatory session this morning, my favorite story from The Immortal Cells of Henrietta Lacks by Rebecca Skloot (summarized in my own words, I wrote more about the book as a whole last week).
Today, if you want to perform an experiment involving people in any way at all, you have to get it past the IRB: your institution's Institutional Review Board. You have to explain exactly how you'll be getting your participants consent: what exactly you'll be telling them (about any risks and benefits, especially) and how you'll be taking care of any problems that might arise. You can still mislead participants if that's important to the study (e.g. Psychological studies in which you claim to be testing on thing, but are really checking another, or placebo controlled drug studies in which some participants get the study drug and some get a placebo) but you have to justify exactly why its important to do so, and that the patients won't come to any harm (or in the case of placebo studies, that the new drug has an unknown effect such that the placebo patients aren't missing out on any proven benefits). This was not always standard.
In the early 60's one researcher was interested in using the HeLa cells to see what would happen if patients - both cancer patients, healthy individuals, and those with other diseases - were injected with the cancer cells. He ran a number of these experiments on prisoners and patients in various hospitals, never telling the injectees exactly what he was putting in their arms. Until he decided to work with a Jewish hospital in Brooklyn. The researcher formed an agreement with the hospital director, who instructed his doctors to inject their patients without telling them that the injections contained cancer cells. This would only unnecessarily upset them, the researcher and the director believed. Three young Jewish doctors thought differently. They refused to give the injections, arguing that performing experiments without full giving the participants all the information was unethical. The director ignored them and had residents do the injections anyway (and can we talk about that particular delegation? but not today). So the doctors resigned, wrote a letter explaining exactly why and mailed copies not just to the hospital, but to the press. This got people's attention, and, at least according to Ms. Skloot, initiated a spiral of lawsuits that ultimately lead to the rules regarding patient consent in research we have today.
But here's the part I think is crazy: it was just three guys. Three guys in a backroom of a hospital somewhere deciding that this wasn't right. Three guys who played their cards smartly, and got the right people to pay attention. But still - without those three guys who knows when the NIH would have gotten around to creating laws. I'd never much thought about the participant consent rules; they just seem like the right thing to do. I guess if pressed I might have assumed it was a movement, like animal rights. Or maybe in response to something like the famous Tuskeegee Syphillis study. Ironically, what probably pushed these three doctors to action was the same horrific thing that altered the face of much of American science: the holocaust. That hospital - Jewish, remember? Those three doctors - also Jewish. In 1963 one of the only ethical guides for doctors performing experiments was the Nuremburg Code, established by the Nuremburg tribunal in response to the horrors of Nazi human experimentation. But it was just guidelines, and most doctors didn't know about it or thought of it as only for those who needed it - like Nazis and dictators. But those three Jewish doctors knew about it, knew why it existed, and decided that this experiment wasn't okay and needed to be stopped. By them. So yeah, if you ever get too bogged down in the bowels of a system doing things in a way you don't like, remember: just three guys.
Sometimes we get the opportunity to make a major impact, but we are all impacting the world around us in little ways all of the time. You mentioned the holocaust. There is good documentation that when Hitler served in WW I as a messenger he was spotted by a British sniper who, for some reason, did not shoot him. A moment of compassion that changed the world? Or did the sniper just have to sneeze? Hitler had some talent as a painter and twice applied to the Academy of Fine Arts in Vienna and was twice rejected. Perhaps if he had been admitted? Hitler was sentenced to prison for five years but served only nine months, for his part in a violent uprising in the Weimar Republic in 1923. If he had served the entire 5 years, the Nazi party would probably have fallen apart without a leader.
ReplyDeleteSo you never know when some small thing you do could change the world in a big way.