The above thought may apply even more this semester though. Through her book, a lecture and a dinner, Rebecca Skloot brought us The Immortal Life of Henrietta Lacks and, with it, a tale of life, science and exploitation. And, in the last few weeks of my epidemiology class, I've learned more about the dark side of science, particularly in public health. That's Rebecca signing autographs. Please excuse the camera phone shakiness.
His top three events? The Nuremberg doctors trial, the thalidomide tragedy and the Tuskegee syphilis study. My heart breaks as I try to memorize the descriptions.
Nuremberg involves Nazi experiments on Jewish and other prisoners. They tested people (without consent) to learn more about human survival rate at high altitude by simulating an altitude of 65,000 feet (Athens is about 725 feet above sea level). Forty percent (80 people) died. They then tested people's survival in the north Atlantic by immersing them in cold water and giving them salt water to drink. 30 percent (90) died. They also inflicted people with common battlefield wounds (gunshots, amputations, stabbings, burns, etc.) and studied the natural history of different treatments. Finally, they tested poisonous gases, drinks and cyanide-tipped bullets on prisoners. 25 percent died.
Thalidomide was given to pregnant patients worldwide to help with their morning sickness. They took it without knowing, really, what it was - without informed consent. It was deemed safe for the women beforehand, but it caused horrible birth defects.
Finally, the Tuskegee study, which is where Skloot comes in. Thalidomide was bad enough, but Tuskegee was intentional. In this study, scientists studied untreated syphilis in black men. These men weren't informed of their disease, and they weren't informed that the research being done on them would also not benefit them.
But, here's the kicker, the piece of all this that makes me really want to cry - and makes me doubt many of "the greatest generation." In 1943, penicillin was discovered as the best treatment for syphilis. By 1951, it was widely available BUT IT WAS WITHHELD from treatment participants until the 1970s. They were even kept from joining the military so they wouldn't receive this miracle antibiotic.
The Atlanta Constitution summed up the tragedy in a way that is both objective and shows the sadness behind it: "Sometimes, with the best intentions, scientists and public officials... forget that people are people. They concentrate on plans and programs, experiments, statistics - abstractions - that people become objects, symbols or mathematical formula or impersonal 'subjects' in a scientific study." I googled the statement, and Whalen has it almost word-for-word.
Skloot mentions Tuskegee in her book, but her real focus was the people, the person of Henrietta Lacks, behind the science and abstractness of human tissue. We are made up of a bunch of cells. But we, as humans, are also beings. We're ultimately much, much more than firing neurons and sloshing cytoplasm.
I knew this, but thanks to a book and a powerpoint, the point was hit home with an intensity that will seal this semester - and ultimately stamp it as a good one.
I hope my generation has learned compassion as well as science. I hope by writing and reading about the past that we can avoid such atrocities in the future (although Whalen points to current studies gone wrong - or unethical in the first place - to prove otherwise). I hope we're bigger than that. That's my hope. I guess I'll wait until the books of the next generation come out to see how well we did.
Sounds like Dr. Whalen teaches a great course: we should encourage next year's class to take it as well.
ReplyDeleteThe trouble with moral lessons is that we have to keep re-learning them. Apparently our memories are short...