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After On Podcast #16: Medical Geneticist Robert Green on the Promise & Peril contained in YOUR Genes

Imagine that a folded note before you reveals - definitively - whether an excruciating, protracted neurological death lies a decade into your future. Should you look?

Do so, and you could be rid of the grim uncertainty. Or, you could be fated to live and die with an awful truth. One which will haunt you, but also let you shape your remaining years with a foreknowledge most of us lack.

This is a terrible quandary no one should face. But one person in 10,000 carries a genetic vulnerability to a gruesome affliction called Huntington’s Disease. You almost certainly do not. But for those with a family history of Huntington’s, the odds can be as high as 50/50. And in certain genetic configurations, the disease has 100% “penetrance” - meaning that all who carry the mutation are doomed. This makes the results of a Huntington’s test as close to an iron-clad prediction as genetics ever gets.

Before the test was created, a remarkably high percentage of people with family histories said they’d take it if given the chance. But once the test was available, roughly 90% of those people changed their minds. This makes it nigh impossible to know what we ourselves would do if faced with that choice.

But all of us will face a version of that choice very soon - albeit a far less stark, and radically more ambiguous version. And roughly 0.000% of us are in a position to make that choice in an adequately-informed and emotionally-prepared manner. The choice is whether to have our full genomes read, and to learn of the innumerable consequences and uncertainties that lie therein.

My guest, Robert Green (who is WELL worth following on Twitter at @RobertCGreen), has spent more time thinking about this than almost anyone, and our interview delves to the core of this intensely fraught and personal decision.