In my persistent slog beating the drums for open genomics I've made the argument that
people should have the right to have more information about what their genetic code entails without the necessary and mandatory imprimatur of professional assent.
Not only that, but I'd want to know myself. This is not a new found position which I've come to of late. I recall 17 years ago having a classroom discussion on this topic in the wake of the tests for Huntington's disease, and I was certainly pro-knowledge. That being said, there were conditionals. My position was that this sort of information would be the most useful for the young, because they could determine the arc of their life with full knowledge of their probable time window. A friend argued that ultimately you should always live every day as if it is your last day anyhow, so why get tested? This is great as a superficial talking point, but as a concrete matter our decisions are conditioned on the expected number of alloted days we have. A few years ago I heard about the story of the singer Bobby Darin, and it made me think of those issues. From Wikipedia:
Darin was frail and sickly as an infant and, beginning at the age of 8, was stricken with recurring bouts of rheumatic fever, an illness that left him with a seriously weakened heart. Overhearing a doctor tell his mother he would be lucky to reach the age of 16, Darin lived with the constant knowledge that his life might be short, which further motivated him to use his talents. He was driven by his poverty and illness to make something of his life and, with his innate talent for music, by the time he was a teenager he could play several instruments, including piano, drums and guitar. He later added harmonica and xylophone. An outstanding student, Darin graduated from the prestigious Bronx High School of Science and went on to attend Hunter College on a scholarship. Wanting a career in the New York theater, he dropped out of college to play small nightclubs around the city with a musical combo. In the resort area of the Catskill Mountains, he was both a busboy and an entertainer....For the most part, the teenage Darin was a comedic drummer and an ambitious but unpolished vocalist.
Darin died at the age of 37, though some of this seems to have been brought on by is inattention to his necessary medication regime. He certainly outlived the expectation of his childhood physician. You can't really know if Darin's knowledge of his likely early death was the necessary and sufficient causal factor behind the vigor with which he channeled his talents, but his biographers seem to think that it played a role.
