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Electronic Records, Private Lives

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WebMD Feature

Who gets a peek at online medical information?

It's 10 a.m. Do you know where your medical records are? That's a question that has a lot of people worried. What if the boss found about that mental health problem you were treated for? Or suppose the life insurance company comes sniffing around to see if you'll be able to keep up with the monthly premiums in a few years. Maybe your cholesterol is higher than you'd like it to be but don't want your family to nag you into giving up cheeseburgers.

Or maybe your company finds out that you've got a genetic time bomb ticking away inside you -- a rare disease that could cause serious health problems for you and send the company's health insurance costs through the roof. Sound like a paranoid nightmare? Not to Terri Sergeant. In 1999, Sergeant, an office manager for an insurance broker in South Carolina, was fired when a genetic test revealed that she had an inherited respiratory disease known as alpha-1-antitrypsin deficiency. The disease, which can be fatal if undetected or untreated, is caused by deficiency of a protein that protects lung cells from infections caused by inflammation. The condition can be effectively managed with weekly intravenous infusions of the missing protein, but the treatment is costly and long-lasting.

It's the "costly" and "long-lasting" parts that appear to have cost Sergeant her job. But the law, at least, was on her side: Sergeant was recently awarded damages from the Equal Employment Opportunity Commission (EEOC), which ruled that she had been discriminated against on the basis of the cost of care.

Nor was Sergeant alone: When the late social scientist Dorothy C. Wertz, PhD, from the University of Massachusetts Medical Center in Worcester, Mass., surveyed U.S. genetics professionals in 1999, she found 693 reported cases where either patients or their family members had been refused life insurance or employment on the basis of their genetic status, even when they showed no symptoms of disease.

Audits Welcome?

Reports such as these, while still uncommon, raise important questions about what happens when sensitive medical information gets into the wrong hands. Many hospitals now have computerized systems that allow access to medical records by anyone with a computer terminal and the right password or authorization code. A few even allow online access to complete medical records by patients themselves.

"Sharing personal medical and health information across the Internet requires a certain leap of faith -- or at least a strong sense of privacy and trust," acknowledge the authors of a Pew Internet and American Life Project report on health information online. Asked whether he would ever share health information with someone he "met" online, one respondent to a Pew survey replied, "ABSOLUTELY NOT. I wouldn't dare. You don't know who you are talking to."

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