Journalists fear new health-privacy rules to stifle newsgathering

Thursday, January 4, 2001

The holidays brought some cheer to privacy groups in the form of new
health-privacy regulations released by the U.S. Department of Health and Human

But to many press advocates, the rules appear to slam the door shut on
a vital source of information in the coverage of tragedies, disasters and
medical issues.

“It looks to me like an ‘official secrets act’ for reporters covering
medical issues,” said Rebecca Daugherty, who operates the Freedom of
Information Service for the Reporters Committee for Freedom of the Press. “It
really levels such terrible penalties on leaks of information. Sometimes there
are stories that really need to be told.”

The new regulations offer some provisions for whistleblowers who take
their concerns to government officials, but none for those who take their
stories to the press instead.

“There are just times when whistleblowers are going to need to get
their stories told by journalists,” Daugherty said. “There are going to be
times when the authorities are not the answer.”

Specifically, she mentioned stories involving the Tuskegee, Ala.,
syphilis study, in which black men suffering from the disease were left
untreated for years as part of a secret government research project. Both the
American Medical Association and the Center for Disease Control had, at various
times, endorsed the experiment.

“Only when the Associated Press broke the story did the public realize
what an outrage this kind of thing was,” she said.

But the new rules would stifle such reporting, press advocates say,
blocking the release of even such routine information as the condition of
patients. Presumably, the rules would hinder medical reporters who regularly
visit hospitals and clinics to follow doctors and nurses on their rounds or who
use health records to reveal the workings of the medical profession.

The Department of Health and Human Services unveiled a draft of the
sweeping rules in 1999, in an effort to protect the privacy of patients’
medical records. The rules were designed to improve patients’ access to their
medical records; narrow instances where such information may be released to
other physicians, health care providers or researchers; and require written
authorization for use and disclosure of health information for other

Department officials say the absence of a national standard concerning
the confidentiality of health information has caused both patients and the
health care industry great anxiety concerning the handling of such records.

Also spurring the proposed rules was the 1996 Health Insurance
Portability and Accountability Act, which stated, in part, that if Congress
didn’t pass health-privacy legislation, the Department of Health must draft
such rules.

Congress missed its deadline, so health officials acted in its stead.
In the wake of releasing the draft rules in 1999, the department received more
than 52,000 comments. The latest rules, released on Dec. 20, are the final

The final regulations provide privacy protection for all personal
medical information, whether collected in oral, paper or electronic form. They
also require patients’ consent for release of any of their medical records,
even for routine purposes.

“For the first time, all Americans — no matter where they live,
no matter where they get their health care — will have protections for
their most private personal information, their health records,” said Health
Secretary Donna Shalala in a news release. “Gone are the days when our family
doctor kept our records sealed away in an office filing cabinet. Patient
information is now accessed and exchanged quickly. With these standards, all
Americans will be able to have confidence that their personal health
information will be protected.”

Penalties for the unauthorized release of such information can reach
as high as $250,000 and 10 years in jail for each violation. The regulations
offer some waivers for law enforcement officials conducting investigations.

Groups such as the Health Privacy Project and the American Civil
Liberties Union hailed the new rules as a major advance in assuring
confidentiality to those receiving medical care.

“In some ways the regulation remains flawed, particularly on the
subject of law enforcement,” said Barry Steinhardt, associate director of the
ACLU. “But on balance, the regulation represents a significant step forward
because it establishes a broad privacy principle in federal law and does not
preempt state laws that provide even stronger protection.”

But journalists say federal health officials completely ignored their
concerns about how the rules would affect their ability to gather information
concerning medical issues and patient condition.

Ian Marquand of the Society of Professional Journalists says he is
worried that hospital officials might restrict access to information that
should be public for fear of being punished under the rules.

“Our concern is that hospital officials will look at these vague
guidelines, … then look at the very specific and stiff criminal penalties
for unauthorized disclosures and decide to play it safe,” said Marquand, who
chairs SPJ’s Freedom of Information committee.

He said in a telephone interview that he was disappointed that federal
officials seemed to ignore SPJ’s recommendation that information involving
people in police custody, public officials or people involved in violent
crimes, disasters and tragedies remain open.

Daugherty of the Reporters Committee said she, too, was

“A troubled community is made more so when it cannot find or identify
its victims or activate the support systems that neighbors, clergy and others
might provide both the victims and their families,” Daugherty wrote in comments
sent to federal health officials. “Overwhelmingly, the community’s need to
learn about the victims of tragedy is well-meaning and positive, allowing the
gathering of resources to provide help.”

Both Daugherty and Marquand say they understand the need to keep some
medical records private. But they say many records need to remain open for the
better interest of the public.

“This part wasn’t broken,” Daugherty said. “It wasn’t in need of
fixing. Hospitals weren’t giving out information. They were very sensitive. No
one had ever complained.”