SPECIAL SECTION THE END OF PRIVACY
RISK OF EXPOSURE
Few things can make you famous—or notorious—as fast as an encounter with the Ebola virus. New York physi- cian Craig Spencer saw his daily life dissected by the media, which noted an evening at a Brooklyn bowling alley, a meal at the Meatball Shop, and rides
on the 1, A, and L subway trains. Kaci
Hickox, a nurse from Maine, was publicly
attacked for defying a quarantine that scientists agreed made little sense. The Daily
Mail, a British tabloid, delved into the past
of freelance cameraman and Ebola patient
Ashoka Mukpo and dug up salacious details
about his parents’ love life.
Protecting medical information is tricky
enough, but when you fall ill during an outbreak of a new or particularly scary disease,
everything appears to become fair game. It’s
not just reporters who pore over your life.
Doctors and public health officials, too, want
to know where you have been, what you have
done, and with whom. The more widely they
share any of that information, the greater
the risk to your privacy.
A rise in the number of new and reemerging diseases in the past 2 decades—
including SARS, MERS, and several
influenza subtypes—has brought such problems painfully into focus, and the advent
of social media and cell phone cameras
has increased the pressure. When ambulance workers clad in white protective suits
picked up a man at his home in the Dutch
city of Maastricht on 26 October 2014, for
instance, “it was on Twitter in 20 minutes,”
says George Haringhuizen, a lawyer at the
National Institute for Public Health and the
Environment in Bilthoven, the Netherlands.
Regional health officials were quick to deny
claims that Ebola was involved.
Reining in bloggers and Twitter users
may not be easy. But even professional efforts to track outbreaks pose new threats
to privacy. Information about specific
patients—although anonymized—is now
shared worldwide on public e-mail lists for
emerging diseases such as ProMED, which
often recirculates newspaper stories from
around the world. Although it always redacts
patient names, says ProMED Editor Larry
Madoff, a simple Google search is enough to
find the original story with those names.
When new or dangerous infectious diseases strike,
public health often trumps personal privacy By Martin Enserink