Obligation and Choice

Let's say you have a really bad disease, like cancer for example. A doctor comes along and asks if you will take part in a study but in order to do so, you will need to take medication but not know if it is real medication or a placebo that will not do anything. These types of studies are the heart of "double blind studies" that are core to clinical research. In other words you are being asked to be a guinea pig for the betterment of mankind and medical science. Do you have an obligation to say yes? According to the authors of an article in JAMA in July, you do! Schaefer, Emanuel and Wertheimer argue that for a number of reasons, the decision to participate in biomedical research as a patient is a moral obligation and not merely a personal choice.

While they are careful to make a distinction that it should not be a legal obligation, they say that if you answer "no" to my initial question and do not take part in the study, you are morally wrong. You are a bad person. I am troubled by that position. The standard approach to such questions is that an individual has the right to decide these issues for themselves and that the morality of the decision is not an issue and no judgment as to the morality of the individual making the decision is passed.

Perhaps I worry too much about the moral assuasion becoming a legal one but I want to keep my autonomy and not be pressured into taking part in studies that I feel are not valid, not helpful and not in my or societies best interests. I do not want to have a system in which people are shamed into taking part in studies that are designed more for the scientist doing the study and less for the patient. Let me make that decision on a study by study basis without the societal pressure that this article seems to endorse.

How do you feel about this? Let me know.