The title of the dark plastic folder read "National Youth Leadership Forum on Medicine" in gold-embossed letters. Ah yes... that time when I was especially clueless. This story is a difficult one for me to share, but I feel that it is important to do so.
Let's start with the beginning:
NYLF is an organization that takes young high schoolers and entering college freshman to a college campus where they learn more about a challenging profession like politics, engineering, law and medicine. Back in 2000, I went to UCLA for the summer to learn about medicine but what stuck with me was what I didn't learn. NYLF was crammed with a bunch of super-charged wannabes, self-absorbed know-it-alls, multi-talented maestros and curious impressionables. I was a mixture of the first and the last of these types -- the a dangerous mix of knowing nothing at all and talking a lot.
We were broken into groups of about a dozen students all teamed up with a med student mentor. My mentor was about the most laidback guy ever... which made our group very fun to hang out with, but also very unfocused in our work at the same time. We had talks with specialists and primary care physicians, AIDS patients and public health workers, we went to a hospital and a medical school, we got to see research and participate in a small group case study.
Our culminating project was an ethics presentation. We were in charge of organizing information on the topic of "fetal tissue research." It's hard to believe that a mere six years ago, the more encompassing term "stem cell" was not used in our packet, but thats what we had. Our mentor discussed a few of the issues at hand as mentioned on the one sheet blurb we were given on the topic.
Fetal tissue research has led to successful transplants and treatments for those suffering from Parkinson's disease. Fetal tissue transplantation research is still being performed for a number of other disorders including Alzheimer's disease, Huntington's chorea, acute myelogenous leukemia, diabetes mellitus and Hurler's syndrome.Here's where I tossed in the red herring. "How did they perform these transplants? How did they know they were successful?"
"Well, they might have done a trial where they had one patient where they injected fetal tissue into their brain and compared it to the results of another patient there they didn't inject anything." Things went downhill from here. It all sounded very dangerous to me, not to mention that half of the patients were being lied to! How could these scientists operate under such callous measures and call it science?!?
Our issues to examine like "would it be ethical for a woman to get pregnant to supply fetal tissue to a relative?", "should a woman have to give consent to determine what happens to her fetus after an abortion is performed?" and "should women receive monetary compensation for their donation in fetal tissue research?" all went to the wayside. Obviously, there were better alternatives than deceiving half of the test subjects and injecting them with useless saline! My outrage spread through our throng of wannabes, know-it-alls, maestros and impressionables.
Our debaters did a great job of presenting their findings to the rest of the NYLFies. However, the moment they brought up our main discussion on the ethics of placebo effect, we were met with harsh resistance. Everyone voted on the measures they felt made the right decisions. Despite the fact that we had a great discussion and plenty of examples... we were shot down. It was quite shameful, really. While everyone else had ~70-80% approval, we had figures closer to Bush's current approval ratings. The contrast was a slap in the face and a wake-up call for our disappointed mentor.
Thankfully, no one in the group blamed me for this utterly embarrassing failure.
Now, as I close this beautiful binder and tuck it away back inbetween my yearbook collection, I notice how the pages of the book inside aren't ragged and dogeared like the other books on my shelf. Have I blocked this totally from my memory until now? Does any of it hold any credence whatsoever? How has my past ignorance impacted my present self? I began to search for answers.
I doubt our first-year medical student mentor knew anything about the actual research, but he knew just enough about clinical trials to deal the damage to our young debate team. Randomized controlled trials consist of mixing up a sample of patients and performing two types of procedures. In order to remove the psychological effect of feeling better after being treated aka the placebo effect, the patients do not know if they are receiving a legitimate treatment or the false treatment (ie the medicine and the sugar pill) or the classical treatment versus the new treatment. This is absolutely necessary for scientific research. Without a baseline to compare the results to, there is no way of telling what actually works and what is just spontaneous remission of disease.
Researchers often go a step further and they make sure that they don't even know who is receiving Treatment A and who is receiving Treatment B. This prevents them from preferentially giving the treatment they like to people they like or vice versa. Double-blind trials are very solid in removing bias. Statisticians might be blinded themselves in triple-blind studies, but then it seems like no one knows whats going on... until it gets magically published in some journal. ;-)
Anyway, the scenario that our mentor painted was likely the wrong one. Transplanting tissue is a very dangerous endeavor. Human trials of stem cell transplants into Parkinson's patients haven't been done yet (to my knowledge, please correct me if they have) because we have not yet perfected ways to limit their growth in mouse models. (Freed, 2002 PNAS) Due to the current controversy over current stem cell research (and the relative quality of the approved embryonic stem cells,) I doubt that we will see clinical trials reach Phase 1.
Looking back, my shameful moment really made me the person I am today. I learned how easy it is to let your emotions get in the way and distract you from the purpose of these types of experiments. Objectivity is not something that scientists are mystically born with; they have biases just like everyone else. This is why it is so important to perform double-blind protocols. This is what separates testable, provable medicine from snake-oil.
Wow! I have no idea if you'll ever see this comment, but that's completely okay. I just thought I'd say something because I'm currently just a homely high school student with an interest in medicine confirmed by NYLF (which prove to me also that I knew absolutely nothing).
ReplyDeleteThe question my debate team had to discuss was whether or not animal testing is ethical; we ended up being required to argue against it. We lost, but the judges said it was a close one. But that doesn't change the fact that we lost.
Charllotte, what were your conclusions? The experiments we perform on animals are certainly valid and valuable, contributing to our understanding of the world... but I predict that scientists will get progressively hamstringed in the types of experiments we can perform.
ReplyDeleteJust a couple of decades ago, medical schools used to routinely perform experiments on dogs, clamping off their arteries, injecting them with chemicals to demonstrate what would happen, etc. Now, we don't have these sorts of graphic (and gruesome) experiments. Animal experimentation has to go through a rigorous process before an Institutional Review Board (IRB) to be approved.
This extra paperwork has been beneficial in raising ethical standards and it has also made it more difficult to perform animal testing.