Waiting for Dr. Godot

Medical research is for proving what you already know. We like to imagine that our ideas come from evidence, but they don’t. How could they? Evaluating evidence presupposes a robust theory, a plan for gathering the necessary data, and a database worth analyzing. The analysis rests on the assumption that complexity is random, and on the application of statistical methods that show findings to be unlikely. At its best, these methods identify only very strong effects; the rest disappear into randomness.

Our medical research methods are not methods of discovery. Fortunately, we can use our common sense, and our ability to investigate everyday life. To paraphrase Berton Roueché, we can become medical detectives. We can see this in positive examples like Dr. Arthur Herbst’s discovery that when women took diethylstillbesterol, DES, during pregnancy, their daughters were at risk of a rare cancer called vaginal adenocarcinoma. He discovered this by asking the mothers what they thought might have caused the cancer. The mothers pinpointed DES.

Dr. Herbst conscientiously sought help from an epidemiologist, collected the necessary data, and published his findings in a medical journal. He alerted the medical community to an important hazard and protected the health of many daughters. In medical circles, he became famous as a wonderful example of what doctors can become. But it was the mothers of DES daughters who pinpointed the cause of their daughters’ cancers.

When I got sick, I confided in my fellow epidemiologists. I told them about the new epidemic and expressed hope that someone would investigate it. I knew that career researchers could advance by meeting the expectations of over-managed, over-evaluated, underled peers, and by researching topics that bring respect, funding, and publication. Even so, I was disappointed that none expressed a passion for discovery that might tempt them to break with the crowd or transcend managerial manipulation. A lifetime of standardized testing had conditioned them to meet or exceed expectations.

When we are sick, we can’t afford to play it safe. We can’t imagine that those who have dedicated their lives to research will be either willing or able to help us. Passivity is a poor response to mystery. We have no reason to be passive. We and our friends and families are in the best position to identify the common causes and consequences of new illnesses, and we have nothing to lose and our health to gain in piecing together the big picture. Once we have done so, we can use it to find personal healing and cure.