The disease was described by Ivar Asbjørn Følling, a Norwegian doctor, in 1934 but it wasn't until [I was born] 20 years later that a neat cure, based on a low Phe diet, was developed and rolled out at least across the developed world. 20 years after that, I was in college and I attended a lecture on the utilitarianism of health interventions. In Ireland, 60,000 children are born each year (it was the about same in 1975: smaller base population + higher birth rate). On average 6 of those will have PKU, which if detected early and The Diet implemented religiously, will have a fine fulfilling life in society paying taxes. If not detected, those children will be a handful needing a lot of support and/or being put in A Home. Call that €100,000 a year each or €600,000 every year to the tax-payer. You can detect PKU reliably by taking a blood-sample with heel pin-prick and a Guthrie Card and getting that processed at the National Children's Hospital. That costs €10 a pop or €600,000 a year. So Guthrie cards pay for themselves in the first year . . . quite apart from immeasurable benefits of having a healthy child rather than one who is deeply compromised.
Having grown up foreign, and fluent in Chinese, Pearl had zero tolerance with labelling people, especially children based on their skin pigment. She co-f[o]unded Welcome House an international interracial adoption agency which went on to place 5000 orphans in homes where their future was brighter than a Third World orphanage. I think of her life [2010 biography] as being a bit like The Verger's: if Carol had been born without PKU it is unlikely that her mother would have written her best seller and gotten it published to such acclaim. And without the acclaim, there would have been no money or drive for Welcome House. In that sense Carol took one for a team 5,000 strong. tsk! more Utilitarian reasoning!