“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. People at work started asking him if the comments referred to his family. So Fei decided to speak out. “When I came forward, we were afraid. I was speaking out against my husband’s boss, who runs a powerful company,” she says. “But I just felt it was imperative to speak up to defend my daughter’s basic humanity. I also came to see that to single out any individual for their expenditures undermines the principle of health insurance.” After an uproar, Armstrong quickly apologized and reversed his decision on benefits.

But the episode underscored just how insufficient the existing protections are for individual privacy in the medical realm. Under the Health Insurance Portability and Accountability Act (HIPAA), it’s illegal for health plans and some other entities to reveal medical information about those insured or treated. CEO Armstrong didn’t name names … but they were easily deduced by many employees. If AOL self-insures (which as a large corporation it’s likely to, but will not publicly confirm), then it is considered a health care provider subject to HIPAA. Many medical and legal experts considered Armstrong’s action unethical and possibly a violation of existing medical privacy law. The Office for Civil Rights at the Department of Health and Human Services, which is in charge of investigating violations, would only say, “As a matter of policy, the Office for Civil Rights does not release information about current or potential investigations.”

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