Electronic Records, Private Lives
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.
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
"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."