One of a Kind
Seth Mnookin reports the story of how one couple, Matt Might and Cristina Casanova, worked with researchers to diagnose their son’s disease and connect with other families whose children also had the same genetic disorder. Mnookin’s story also exposes some of the problems within the cloistered research community. We featured Might’s story about his search to diagnose his son’s disease in 2012.
Pardis Sabeti, the Rollerblading Rock Star Scientist of Harvard
On trailblazing geneticist Pardis Sabeti, who balances being in a rock band with her work in computational genomics:
“There’d be plenty of people eager to talk to Sabeti before long. That October, she was the lead author on a paper published in Nature that laid out her discovery’s ‘profound implications for the study of human history and for medicine.’ For the first time, researchers could look for evidence of positive selection by testing common haplotypes even if they didn’t have ‘prior knowledge of a specific variant or selective advantage.’ By applying this approach to pathogens, there was the possibility of identifying how diseases had evolved to outwit the human immune response or develop drug resistance—knowledge that would open up new avenues to combating disease.
“All of a sudden, the previously unknown 26-year-old was a superstar. David Hafler, a Yale neurologist and immunobiologist who has worked with Sabeti, compares her approach to that of a preternaturally gifted athlete, the hockey great Wayne Gretzky. ‘He was asked, ‘Why are you always where the action is?’ And he responded, ‘I don’t skate to where the puck is, I skate to where the puck is going to be.’ That’s the reason she’s able to make all of these fundamental contributions.'”
The Kingdom and the Paywall
A funny thing happened on the way to the graveyard. Though the New York Times’ circulation dipped during the crash years, much of the lost revenue was made up for by doubling the newsstand price, from $1 to $2—evidence, the paper insisted, that its premium audience understood the value of a premium product. In March, after several years of planning and tens of millions in investments, the Times launched a digital-subscription plan—and the early signs were good. In fact, less than 48 hours before my interview, the Times announced it would finish paying back the Carlos Slim loan in full on August 15, three and a half years early.