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Social media use in investigation of Md. transplant rabies death raises patient privacy issues

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HAGERSTOWN, Maryland — Public health investigators say they used Facebook and other social media to find people potentially exposed to the rabies virus after a Maryland man died from the disease last year in a rare case of transmission through a transplanted organ.

Social media played an invaluable role in the investigation, the investigators said in an article detailing their work. But investigators must use such tools responsibly to avoid violating patient privacy and confidentiality, lead author Ryan M. Wallace of the Centers for Disease Control and Prevention said Tuesday.

"We wouldn't go out and do a social media blast — some Twitter post or Facebook feed — saying, 'Do you know this person? Have you had contact with him?'" Wallace said in a telephone interview from Haiti.

Instead, the epidemiologists used information from organ donor William Edward Small's Facebook account to reconstruct his social calendar and figure out who he might have had contact with during his infectious period, August to September 2011.

PHOTO: FILE - In this March 18, 2013, file photo, Shane Mercer holds a photo of his father, Airman Will Small, as his mother Alecia Mercer looks on at their home in Kinston, N.C. Small, whose organs were donated to four patients after he died, had at least two untreated raccoon bites several months before he became sick, and tests confirm his rabies-infected kidney led to a Maryland recipient's death. An article in the March 27 issue of Zoonoses and Public Health says social media played an invaluable role in the investigation, allowing officials to find someone who was seated next to the infected donor on a commercial flight in 2011. That person was assessed and not recommended for the shots. (AP Photo/Allen Breed, File)
FILE - In this March 18, 2013, file photo, Shane Mercer holds a photo of his father, Airman Will Small, as his mother Alecia Mercer looks on at their home in Kinston, N.C. Small, whose organs were donated to four patients after he died, had at least two untreated raccoon bites several months before he became sick, and tests confirm his rabies-infected kidney led to a Maryland recipient's death. An article in the March 27 issue of Zoonoses and Public Health says social media played an invaluable role in the investigation, allowing officials to find someone who was seated next to the infected donor on a commercial flight in 2011. That person was assessed and not recommended for the shots. (AP Photo/Allen Breed, File)

The reconstruction process began 18 months after Small died in Pensacola, Florida, from a brain inflammation. The cause of the inflammation was confirmed as rabies in March 2013 after the Maryland man, who had received one of Small's kidneys, died from the disease.

The name of the Maryland man hasn't been publicly released.

Three other people, in Florida, Georgia and Illinois, also received organs from Small but didn't get rabies.

Small, an avid hunter and trapper from North Carolina, apparently was infected by a raccoon bite.

The public health response involved the CDC, the Defense Department — Small was an Air Force recruit and the Maryland man was an Army veteran — 13 state health departments, nine local health departments and three foreign ministries of health, according to the article in the March 27 issue of Zoonoses and Public Health. They located and assessed 564 people for possible exposure, and recommended that 58 get shots as a precaution.

The article urged development of a standardized approach for assessing rabies exposure among potential organ donors. The CDC and the Maryland Department of Health and Mental Hygiene made similar recommendations last year.

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