The therapeutic misconception
In medical practice, the efforts of the medical team are directed toward therapy. That is to say, when a doctor or a nurse or some other medical professional performs some action on a patient, her actions are morally underwritten by the benefit she hopes to provide to the patient.
For example, a blood draw is somewhat uncomfortable. But we allow medical professionals to take blood if it is done for the purposes of diagnosis. Same thing with setting a bone—very painful, but it is allowed because it is aimed at providing some direct medical benefit to the patient.
In human research, this is not the case.
In human medical research, the efforts of the research team are directed toward gaining useful and generalisable knowledge. That is to say, when a doctor or a nurse or some other medical researcher performs some action on a patient, her actions are not morally underwritten by the benefit she hopes to provide to the patient. Rather, her actions are morally underwritten by the benefit she hopes to provide through the use of generalisable knowledge in informing medical practice.
Blood draws are very common in many kinds of medical research as well. But they are allowed in human research, but not because the patient will necessarily receive any benefit. Instead, it is the benefit to others that makes drawing blood from the patient permissible.
To put it simply, medical researchers are not necessarily trying to help their subjects. That is not what they are doing. This is probably pretty clear at this point.
But what about cases where the patient-subject is receiving some new “experimental” therapy? Perhaps our hypothetical example patient-subject has already been through multiple therapies, none of which worked, and this therapy is the patient-subject’s last best hope.
It’s in cases like these where the line between therapy and research becomes fuzzier.
The therapeutic misconception is something that happens when patients regard medical research as medical therapy. Often, patients will have an exaggerated idea of the chances of success of the procedure. In other cases, patients will full-out not understand that it’s possible that they would be randomised to a control group and not receive any treatment other than a placebo.
The therapeutic misconception is a major problem in human research ethics, and different ethicists have had different ideas on how to deal with it. Some have suggested that doctors should wear red labcoats when they are working in their capacity as a researcher, in contrast with their normal white ones. Others have suggested that patient-subjects always be compensated financially for their participation in a trial, so that the patient regards the money she receives as the benefit from the trial, rather than the “treatment.”
I saw Captain America on Friday night. While it is a fun movie, it doesn’t help things too much in terms of the therapeutic misconception. I know it wasn’t written with human research ethics in mind, but really, we’ve got a guy who is a subject of a medical experiment, but who receives tremendous medical benefit.
People who are participating in medical research watch films like this and even though they know that they won’t come out of the research protocol standing a full two feet taller with rippling muscles not having spent a minute at the gym, they still get the wrong idea—that when you’re recruited to human research, one of the researcher’s goals is direct medical benefit to you.
Alternate ending to Captain America
Most of the movie would be the same, but just as Captain America is about to save the world, we find out that Steve Rogers was actually randomised to the placebo group. Captain America crashes the evil airplane into the ice and everyone says, “Oh no. It was just a placebo all along.” The body is never found.