WUNC reporter and AHCJ member Rose Hoban put together a story about uneven disclosure of H1N1 deaths by public health officials and the possible benefits and risks of providing more information. In the end, Hoban reported, it comes down to balancing individual privacy and the public interest.
On the official side, Hoban spoke to Megan Davies, M.D., North Carolina’s epidemiologist, who referred to the lack of a “compelling public health need” to provide H1N1 death data on a county-by-county level, pointing out that in many areas it would be easy for locals to take that information, match it with recent death records and come up with the name of the infected person. Davies said that, in cases like that, she fears the infected person’s family would be stigmatized.
“The fear of contagion’s a really primitive thing that comes up in people,” Davies said.
Additionally, Hoban says, officials are bound by medical ethics, state laws and federal health privacy regulations (which, she notes, generally don’t cover people who are already dead).
For another perspective, Hoban spoke with AHCJ board member Felice Freyer of The Providence Journal. Freyer discussed AHCJ’s report that disclosure had been uneven across the country, and said that officials should share information unless there’s a compelling reason not to.
“Public health officials can’t do their job if they don’t have the trust of the public and no-ones going to trust them if they hide information for no reason,” Freyer said.
Former CDC lead legal counsel Gene Matthews agreed, noting that “Too little information can be a bigger headache than too much.” According to Matthews, this problem has been exacerbated by the Internet where, “If the public health officials don’t provide enough information, the outsiders will simply make it up.”