It can be comforting to be watched. At the swimming pool, it is reassuring for children and adults alike when there is a lifeguard on duty, eagle-eyed and ready to rescue those in distress. At home, modern parents can invest in remote video technologies to observe their kids even when Mom or Dad is out of the house or simply in another room. In the post-9/11 era, our intelligence services monitor an incessant stream of information for chatter about impending attacks, listening for a crucial signal in the noise in the hopes of intervening and averting another catastrophe.
My name is Mark Lewis and I have a confession to make: I arrived late to the party of adolescent/young adult (AYA) oncology, bashfully and in disguise.
I am an adult oncologist, meaning that my practice is medically and legally confined to patients 18 years and older. But I am married to a pediatrician, and I understand that cancer, in all its terrible callousness, shows no respect for age; it can burst forth in the blood of an infant just as catastrophically as it can in the bones of that child’s great-grandfather.
Every student of Ethics 101 wrestles with the trolley problem. In this moral exercise of the imagination, you are standing by train tracks watching a runaway trolley race towards 5 people who are going to be crushed unless you intercede. If you pull a lever, the trolley will divert onto a different track, where it is bound to kill one person. In this situation, is it better to be passive or active? Should you pull the lever or not?
Participation in a clinical trial is, ideally, a two-way street. The patient potentially stands to gain therapeutic benefit while the researchers learn about the efficacy and toxicity of the intervention under study. This post on the New York Times Well blog highlights concern about a lack of transparency in reporting the outcomes of trials, even if they generated negative results or, to quote Susan Gubar, “adverse consequences.”