“Only human love keeps surgery from being an act between two madmen.” -- Richard Selzer, Letters to a Young Doctor
I have often noticed a sort of convergence when I get into one of my reading spells. On the 4th of July, my sisters and I and a friend went to see The Amazing Spider-Man. There is a scene where someone impatient for scientific progress plans on taking the new serum to the veteran’s hospital to test it on some of the people there. I’m not sure if the idea is more appalling if you think that no one would ever do that, or if you know that it’s happened a lot.
I enjoyed the movie, but I may lean towards the Tobey Maguire version, and I’m going to quote from that one: “With great power comes great responsibility.”
At some point I need to quit quoting stuff and say what I’m trying to say, but I am finding it difficult. Okay, here is a trait about me where I am not sure whether it is good or bad: as many times as I think I can’t be shocked anymore, I am always wrong. It does matter how much I read about greed and corruption and arrogance, and how low people can go, and I still shocked when people do it.
In theory a doctor would be all about healing. With research scientists, they could be researching weapons or destructive forces, but the ones that pertain to the reading were medical researchers so the focus should still be on conquering diseases and being able to make people well. That’s not always how it works out.
Let’s start with Bad Blood: The Tuskegee Syphilis Experiment, by James H. Jones. Under the original terms of the experiment, the plan was only to withhold treatment for six months, to observe the course of untreated syphilis. Since there was no really effective treatment for syphilis, you could even argue that it would not be particularly harmful to the men, because participation in the experiment was getting them other medical treatment that they were unlikely to be able to afford, and six months is not a terribly long time that disease.
You can almost feel comfortable with that, even if some qualms come up. However, it stretched on past the six months, all the way from 1932 to 1972. Even after a quick and effective treatment became available in the 1940’s, it continued. Again, it only ended because of the right person in the right place: Peter Buxtun, a CDC employee with a conscience and contacts in the press.
It was not merely a failure of people to follow up and see that the original terms of the experiment were followed—the experiment was questionable from the get-go. First of all, if they really wanted to test untreated syphilis, they should have used a different pool, because these men had all received some mercury treatments. Also, they lied to the patients. They were not only led to believe that they were receiving treatment when they were really only being monitored, they were not even told that they had syphilis. They called it “bad blood”, and it looks like the first of the doctors to do that was merely trying to simplify things, and make it less confusing, because they were calling it that before the experiment started, but clearly there is no informed consent.
Actually, for more information on the history of informed consent, that’s when you read The Immortal Life of Henrietta Lacks by Rebecca Skloot. She covers that in great detail, and there are stories of cancer cells being injected to uninformed patients at a hospital—not for veterans but in the one case for elderly Jews, so you did have Holocaust survivors.
There is not the same amount of abuse in the Henrietta Lacks case specifically. She was not told that her cells were being taken, but she received the traditional treatment for cancer. It did not work, but the traditional treatments of the time were not that great, and she had a particularly tough cancer, leading to the ability of the cells to reproduce indefinitely and to infect other cell lines. (Seriously, it’s a fascinating book.) Also, the original doctor did not profit from the cells (he was giving them away), though other people did. That was frustrating for the family, but the refrain that they kept coming back to was that these cells have made millions of dollars and led to all these advances in science, and they can’t even get health care.
I’ve said that all of this comes down to human issues, and there are a few here. On the one side is pride, where people are so sure that what they are doing is good and vital that other considerations are just not important to them. As information would come to light people would make comparisons to the experiments conducted on people in concentration camps, and the parties involved could never see it. They weren’t like Nazis! Well, they were a little bit, and the difference between being sadistically evil and carelessly arrogant is important, but you can still do a lot of damage either way.
The other thing that is really important is how poverty and ignorance make these things possible. Doctors and staff could lie, and no one knew any better. One of the great things about participating in the Tuskegee experiment is on “treatment” days, you got a hot meal. That meant something. The incentives they were offered were so minor to many of us, but in the rural South, they were huge. One of the perks was that the subjects would be given bottles of aspirin and iron tonic, and for undernourished people with common aches and pains, that was great stuff.
I was in an institute class about twenty years ago, and the instructor wrote on the board:
Inequality equals sin. It makes it easier for it to happen, and sin was probably a key factor in putting the inequality there in the first place.
The Lacks family should be able to go to the doctor, not because their mother made a contribution to science, but because they are human beings, and good health is important. It’s not that they didn’t have jobs—the jobs don’t pay enough.
When the Tuskegee subjects could not afford medical care, or hot meals, or aspirin, that’s not because they were lazy. They were living in an environment where it was impossible to get ahead, and decades later John Griffin Howard found situations like that and getting close to a century later you can still find it.
There are racist attitudes involved. Studying syphilis among black people seemed like a reasonable thing to do, because everyone knew they were immoral and animalistic, so they had a high infection rate. Sure, if you compared it to the white rate of infection at similar income and education levels, it was pretty similar, but don’t let facts get in the way of science.
It’s more than racism though. There is a completely skewed sense of values. People are devalued. Sometimes the culprit is mere pride, but usually greed is at the back of it, and that again is something that is very much alive today. I think I’ll be getting back to this.