Medical Privacy Under Threat in the Age of Big Data

(The Intercept) “I didn’t understand the issue of medical privacy. It sounded abstract,” says Deanna Fei, author of the new book Girl in Glass, which covers the premature birth of her daughter Mila and an ensuing storm over medical privacy and ethics. Now she says firmly, “This is an issue of civil rights and social justice. Without the right to medical privacy, ordinary Americans can’t keep information from being used against them.”

Fei’s most intimate story is now public knowledge. A recap: When she went into labor after only five and a half months of pregnancy, she didn’t know if her baby would live or die. She was in pain, bleeding, rushing in a cab to the hospital; and, later, she was staring at the bruised skin of her less than 2-pound daughter, who was too fragile to touch. As baby Mila grew into a healthy one-year-old, a new blow fell. The CEO of AOL, Tim Armstrong, blamed a forthcoming benefits cut on the costs of two “distressed babies” born to employees. One of the employees was Fei’s husband, whose insurance covered the family.

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