Unearthing an unusual privacy battle

From the Winter 2009 issue of The News Media & The Law, page 19.

It is impossible to invade the privacy of the dead.

That was the simple logic that Catherine Renschler, the director of the Adams County Historical Society in Nebraska, operated under as she sought the names of about a thousand people buried in a local cemetery. That cemetery happens to sit on the grounds of a state hospital — one that used to be known as the Hospital for the Incurably Insane.

It’s now the Hastings Regional Center, where teenagers are treated for mental health problems. Administrators there refused Renschler’s request for the burial information. The historical society took the case to court, but lost on privacy grounds. The Nebraska Supreme Court is set to rule on the issue this spring.

But the historical society’s run-in with a twisted notion of privacy is not unusual. More and more requesters are encountering strained notions of privacy in response to records requests. For some experts in the area, the expansion of the legal concept of privacy is an extension of Supreme Court cases that limited the definition of “public interest” that courts use in weighing disclosure where there are privacy implications.

Beyond Renschler’s battle, The Associated Press recently lost two Freedom of Information Act cases in the U.S. Court of Appeals in New York (2nd Cir.) because of an unusual set of privacy concerns.

AP wanted access to convicted Sept. 11 American-born Taliban soldier John Walker Lindh’s petition for a commutation of sentence. The news service was denied out of deference to Lindh’s privacy interests. The wire service also sought information about Guantanamo Bay detainees who had been abused or were accused of abusing others — and found no greater success there, on similar grounds.

New privacy concerns in Nebraska

What the Adams County Historical Society is facing in its pursuit of the cemetery data isn’t per se an outgrowth of privacy law rooted in an interpretation of FOIA. Rather, it is Nebraska’s understanding of the federal Health Information Portability and Accountability Act and how that statute intersects with state open records laws — a privacy problem in another guise.

HIPAA is the federal law that protects patient privacy in doctor’s offices and hospitals and limits access to medical records in a wide variety of cases.

But the historical society isn’t seeking the conventional type of medical records it seems most people agree should be private. Instead, Renschler wants the names of people buried in numbered but otherwise unmarked gravesites. Those records, she says, are simply burial or death records.

“We were dismayed they would claim that these were medical records,” Renschler said.

But when the records are held at places like the Hastings Regional Center, which bills electronically for medical services, the records do fall under HIPAA’s protections. As Bob Gellman, a privacy consultant in Washington, D.C., is fond of saying, those protections last until “the sun runs out of hydrogen.”

The historical society is trying to use Nebraska’s open records law to get around HIPAA. The seldom-interpreted law — courts have ruled on it at most a handful of times — requires the disclosure of death records. The Reporters Committee filed a friend-of-the-court brief on behalf of the historical society.

HIPAA regulations allow for the disclosure of protected information, such as death records, if a state’s open records law requires it be released.

If only Nebraska law defined death records.

For Renschler, it defies logic that a dead person’s privacy rights could be invaded — particularly by releasing information about his or her burial. She points to probate court records that are public, death certificates that are public, and obituaries published about those who died years ago at the state hospital.

The Historical Society, represented by Thomas Burke of Davis Wright Tremaine in San Francisco, argued on appeal that the hospital’s “insistence that the identities of these individuals should remain private is also belied by the availability of information about other former mental health patients in records that have long been accessible to the public.”

The brief went on to say, “Yet at trial, HRC [the hospital] offered no evidence that the public availability of this information has presented any concern or complaints. For example, census numbers from 1900, 1910, 1920, and 1930, are publicly available online, identify individuals who were patients at HRC and who may be buried in the cemetery. In addition, the complete burial records from the state’s mental health hospitals in Lincoln and Norfolk have been publicly available for decades through the State’s Historical Society.”

What’s more, Renschler says, the historical society is seeking burial records for people who in some cases died 100 years ago. How, she asks, can the release of those records invade someone’s privacy when the burial records for individuals who died at the hospital in 1980 are themselves public?

The legal answer is that recent burial records aren’t maintained by the hospital — they are maintained by the cemeteries where those patients were buried. Starting in the late 1950s, patients who died at the hospital were buried in public cemeteries, not on hospital grounds. When not owned by a medical provider like a hospital, cemeteries aren’t covered by HIPAA.

“They’re claiming the privacy because of the shame of mental illness,” Renschler said. But, she added, “people were there for a lot of reasons that weren’t mental illness.”

In the early 1900s, many residents were brought to the hospital for treatment of what is now known as Alzheimer’s disease, strokes or developmental disabilities. Before World War II, Renschler said, there were no nursing homes to care for people with those afflictions.

In cases where families didn’t come forward for the bodies, the patients who died at the hospital were buried on the grounds. That was true in mental facilities across the country, too; other states have released the names if such records were still around, and changed laws that would have barred that disclosure.

But ultimately Renschler said she thinks the hospital’s refusal to allow access to the records “comes from the 19th century view that people that were inmates in mental institutions were a disgrace.”

Renschler first wanted the burial records more than 20 years ago when the historical society was compiling all cemetery records in the area. She was denied access then, but the historical society wasn’t able to formally request the records and pursue them legally until it recently found an attorney to help.

Twenty years ago, it wasn’t HIPAA that prevented the release — it was just a broadly defined sense of “privacy,” she said.

That fits with Gellman’s understanding of HIPAA. He says it was meant to codify the common practice of protecting information on privacy grounds, not change the day-to-day reality of access to information in most cases.

For journalists, death records are often released in the form of death certificates. Those records have been crucial in piecing together stories; the Omaha World-Herald used them in its investigation of coroner training.

The two-week series relied on public death certificates and autopsy reports to conclude that there are unsolved murder cases and that some coroners guess at causes of death because of Nebraska’s lax regulations.

In New York, a different privacy problem

The U.S. Court of Appeals in New York (2nd Cir.) weighed in on two different privacy issues recently — finding privacy rights where the media had argued there couldn’t be any.

In December, the court ruled that Lindh’s petition to reduce his sentence couldn’t be released because of Lindh’s privacy interests in it.

“AP has failed to demonstrate that disclosure of Lindh’s petition would serve a cognizable public purpose such that it may not be withheld under the privacy exemptions,” the federal appeals court wrote in its unsigned decision.

The three-judge panel also noted that Lindh himself had objected to the release of his petition for clemency, which the court said was key.

“Mr. Lindh’s counsel responded indicating his willingness to consent to release of the petition, redacted to protect any information that might compromise Lindh’s privacy or safety,” the court said.

But ultimately the AP and Lindh couldn’t agree on who would decide what information was “private.” Complicating the issue was a condition of Lindh’s sentence — a promise that he not talk to the media.

The AP argued in its brief to the court that the condition made it impossible for them to negotiate with Lindh for the documents. When the two parties finally did speak, with the encouragement of the court of appeals, they couldn’t agree.

The court reasoned that, “Because AP is unsatisfied with Lindh’s offer to release the petition redacted only to the extent necessary to protect his personal privacy and safety, it is difficult to escape the conclusion that AP seeks the release of purely private information.”

Gellman, the privacy expert, noted that sometimes it is simply easier to withhold the information — to balance the interests and find they weigh against the disclosure. “It doesn’t create any additional problems either for the prosecutors or the court,” he said.

Similarly, the AP lost its case for documents related to the allegations of torture by and against Guantanamo Bay detainees.

A different three-judge panel of the U.S. Court of Appeals in New York said, “We disagree with the district court’s conclusion that the detainees who allegedly have been abused do not have any substantial privacy interest because they, like prisoners, have little reasonable expectation of privacy. Although the detainees here are indeed like prisoners, their Fourth Amendment reasonable expectation of privacy is not the measure by which we assess their personal privacy interest protected by FOIA.”

Instead, the detainees had a much broader privacy interest that protected them, Judge Peter Hall wrote for the unanimous court.

Gellman says the Second Circuit’s rulings are an extension of Supreme Court cases that limited the definition of “public interest” courts use in weighing disclosure where there are privacy implications.

Privacy rulings like those in the Guantanamo and Lindh cases seem to indicate that privacy may be a convenient excuse when the government simply wants to keep secrets, or otherwise doesn’t want to release information. The FBI recently denied one group’s FOIA request for records on Khalid Sheikh Mohammed, the Guantanamo detainee who confessed to killing journalist Daniel Pearl, because it didn’t get a Privacy Act waiver from the detainee.

It seems at though sometimes, Gellman said, “agencies take the path of least resistance, saying we don’t disclose anything” about a living person without a waiver.