It starts with a twitch, maybe a stumble. There's a forgotten word or name here and there. Really, it appears a little like drunkenness. But when symptoms of Huntington's disease progress, they consume the person who has it. The neurodegenerative disease simultaneously disintegrates mental and physical functioning, leaving the patient completely dependent on a caretaker or medical devices, or both, for the smallest of tasks: eating, sitting up, swallowing. A person with Huntington's will eventually lose control over their own body and mind. There is no treatment, and no cure.
The disease is rare, affecting only about 30,000 American adults. But if either of your parents has Huntington's, your risk of having the disease yourself is 50-50, a terrifying coin flip. In 1993, a genetic test for Huntington's was developed, and at the time up to 70% of those at risk for the disease indicated that they would be interested in finding out their medical future. In recent years, the taking of that test has been played out to dramatic effect on shows like This American Life or last summer's HBO documentary "The Lion's Mouth Opens."
And yet the numbers show that the actual testing rate among those who know they are at risk for Huntington's has turned out to be incredibly low, hovering around 7 to 10%. A recent study led by Brown University economist Emily Oster attempted to find out why this is, and the paper comes to a surprising conclusion: Maybe so few among this population get the genetic test because they are, and they believe themselves to be, better off not knowing.
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