This week, we read about the use of human subjects for research. I was amazed at how many rules apply when using human subjects. I was also shocked to learn how often human subjects have been abused in history when used for research. In the Belmont Report, for example, it states that, “During the Nuremberg War Crime Trials, the Nuremberg code was drafted as a set of standards for judging physicians and scientists who had conducted biomedical experiements on concentration camp prisoners.” It reminds me of everything we’re hearing about Guantanamo Bay. I have heard and read frightening accounts of the torture that’s being done to prisoners there just to find out if they know anything. While I realize that this is slightly different than using human subjects for, let’s say, medical research – I believe it’s a fine line. The Belmont Report summed up my feelings best in saying, “The distinction between research and practice is blurred partly because both often occur together…”. It is a very fine line in my opinion.
The idea of using human subjects should be lead by the Basic Ethical Principles. Those who are having the research done on them need to be someone of sound mind and body, capable of making conscience decisions about what they are subjecting themselves to. When I was in college, I took an Educational Psychology class, in which we discussed the treatment of mentally handicapped or disabled persons in the late 1960s. Without having those notes right around me – as it has been 7 years since I was in that class – I remember horror stories about doctors locking up mentally hanidcapped people in insane asylums because they didn’t know what else to do with them. This is seen again in the Belmont Report, “during the 19th and 20th centuries the burdens of serving as research subjects fell larely upon poor ward patients, while the benefits of improved medical care flowed primarily to private patients.” It makes me wonder if their ethical principles were in mind when tests were run on them to figure out what was the best course of action to treat them. Also, in a country where you have to prove medical insurance in order to receive the proper treatment from most places, who truly fair is our use of human subjects in research?
I have to wonder where the “for the good of the cause” and the “spare the rod” line cross. Reading the various examples given about “research” conducted on prisoners almost flattened me. The other time this line blurred for me was when the Belmont Report talks about justifying research using children. I might be a little bit biased in what I’m about to say – for reasons I’ll explain in a moment – but the idea of research being conducted on children scares the heck out of me. My niece, who turned 6 months on August 25, goes in on Monday, the 15th, to have an artery removed. She was born 3 1/2 weeks premature, and because of this one of her arteries is wrapping around her trachea and choking her to death. Unlike everything else that is wrong with her as a result of being a premie, this is not something she will grow out of. While I’m glad that there have been other children who have suffered from this problem in the past so that the doctor knows exactly what he’s doing, I have a hard time imagining that I would be okay with this procedure if it was still in the “experiemental” phase. I hold in the highest regard those who have come before my niece and allowed for the research to pave the way for her; but I don’t know if I would be willing to see this surgery done if it was to be performed on her as a test. I realize this is a little bit paradoxical – I’m glad others have paved the way but I don’t agree in “testing” children – but I can’t seem to put in to words exactly what it is that I mean. I wish there was some other way to test procedures, I guess.
So, after a couple of long rants, I’m pretty sure I’ve just confused myself and you, the reader, even more. I find that I have the hardest time putting what I want to say into the right words. Maybe I should conduct research on myself as a human subject trying to find the best words!