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Experts: Coronavirus Pandemic Tests Limits of Privacy Laws

With a national health emergency of unprecedented proportions, the public can expect access to info needed to protect the community. But when pressed for some information, officials can cite federal privacy protections.

Laguna Beach, Calif. With social distancing and other safety protocols in effect during the pandemic, campaigning has changed drastically. (Marc Martin/Los Angeles Times/TNS)
(TNS) — During the weekend, two people in Cape Cod, Mass., tested positive for COVID-19, the disease caused by the novel coronavirus. Many more people are under self-quarantine after being in close contact with either of the individuals, according to a letter to residents from town Health Director Meggan Eldredge.

"I understand the innate desire to know who and where the positive cases are, however this is private medical information," Eldredge wrote, noting that it would not change the precautions townspeople were already being asked to take.

It is a delicate dance between protecting privacy and protecting ourselves. In addressing a measles outbreak in May, the state Department of Public Health was able to release information on exactly where infected patients had traveled so members of the public could determine for themselves whether they had been exposed and needed to seek medical attention and quarantine. It helped to contain the spread of the disease.

"Public health officials have a duty to protect the privacy and confidentiality of individuals reported to them," state Department of Public Health spokesman Omar Cabrera wrote in an email. But he went on to say that "information that could allow a person to be identified can be released when there is a public health need to alert the public."

The COVID-19 pandemic may test the limits of privacy protection, legal experts said.

When the public is being told that it is facing a national health emergency of unprecedented proportions, it might reasonably expect access to the information needed to protect the community. But when pressed for more information on coronavirus cases to date, town and state health officials quickly draw the curtain of federal privacy protection, the Health Insurance Portability and Accountability Act of 1996 (HIPAA). HIPAA gave greater protections to personal medical information intended to protect privacy and shield patients from unwelcome and unsolicited marketing tactics.

"A lot of people don't understand HIPAA. I'm not even sure I do. But often they hide behind it when they don't know what to do," said Wendy Mariner, the Edward R. Utley professor of health law at Boston University School of Public Health.

"You have to respect patient privacy, but you also need to use common sense with something that is a national health emergency that we haven't seen in our lifetime," said Steve Wirth, a partner at Pennsylvania-based Page Wofberg & Wirth, a national emergency medical services law firm specializing in HIPAA and patient privacy issues. Wirth predicted the coronavirus pandemic would be an unprecedented test of federal patient privacy laws.

Part of the privacy concern is that people could face discrimination, isolation, even retribution if their identity were revealed. Plus, it makes it less likely that those who are infected or suspect they are will come forward for testing. It's also understandable that health care officials and municipalities are cautious given that significant fines in the millions of dollars have been levied against those who release information that violates the privacy of individuals covered under HIPAA, not to mention the negative publicity to those who violate patient privacy.

Still, there is a long tradition, Mariner said, of local public health departments getting reports from physicians and nurses of a contagious disease and asking the infected person whom they came into contact with so those people can be alerted before they pass it on to someone else. Known as contact tracing, it has proved effective in limiting the spread of many diseases, including measles and sexually transmitted diseases.

"To me, the more information I can get, the better," said a Centerville woman who takes an immunosuppressant drug that lowers her ability to fight off diseases. Except for walks with her dog, the woman, who did not want her name used, stays in her home. Her husband runs errands, wears gloves and avoids stores where there may be a long wait time.

"I would say it would be beneficial," she said of knowing whether anyone in her neighborhood had tested positive for COVID-19.

People often voluntarily allow the release of more information to better protect the public, but disclosure without permission is also allowed under HIPAA when there is a serious imminent threat to people who have the power and authority to address it, Wirtz said.

"(HIPAA) is written broadly enough to allow for disclosures as long as you act reasonably and in good faith that the disclosure is necessary and to someone who could reasonably lessen the threat," Wirth said. In general, that means the information is released only to other health agencies or organizations covered under HIPAA regulations, not to the general public, he said.

Measles are the contagion champion, infecting 90% of unvaccinated people in close proximity to an infected person. Its microbes are small enough that they can remain suspended in the air for up to two hours after they've been expelled by a cough or sneeze. Tracing and containing a measles outbreak is effective because vaccination has reduced the pool of potential victims.

Unfortunately, said public health experts, the delay in initiating widespread testing for COVID-19 likely ensured the horse was already out of the barn and the disease was widespread.

There is no vaccine yet for COVID-19, which rapidly spread from two cases in New York City on Jan. 14 to nearly 200 new cases a day nationally by mid-February, with confirmed cases in all 50 states, according to data from the Centers for Disease Control and Prevention.

In the 2003 Severe Acute Respiratory Syndrome (SARS) outbreak that caused nearly 800 deaths worldwide, the U.S. was able to contain the outbreak to eight lab cases with no deaths by initiating early widespread testing and committing 800 CDC medical experts and staff to work on it. But in the case of COVID-19, the U.S. did not initiate widespread testing because of a shortage of test kits, Mariner said. That left communities blind as the extent of the disease nullified the effectiveness of contact tracing and the need for the public to know, she said.

"Everyone probably has to assume that it is in their town already. The idea you need to know if someone in your town has the disease in order to protect yourself is naïve," Mariner said. "We all need to be taking precautions, because people can be infected and not know it."

On its website, the CDC cautions that it is still learning how the new coronavirus spreads, but it believes transmission is primarily through droplets from the mouth of an infected person that are inhaled by someone standing within 6 feet.

Coronavirus microbes are heavier than measles microbes and drop out of the air quickly. A letter published in the March 17 New England Journal of Medicine by researchers at the National Institutes of Health, Princeton and UCLA did find that enough microbes remained in the air three hours after they had been expelled to be considered infectious, on copper for four hours, cardboard for 24 hours, plastic and stainless steel for up to two to three days.

Mariner said the difficulty of containing this coronavirus is that it is often transmitted by carriers who do not show symptoms. One study by Ruiyun Li of the MRC Center for Global Infectious Disease Analysis and others and published in the March 16 edition of the journal Science found that the rapid spread of COVID-19 in China was made possible by the large number of infected people exhibiting mild or no symptoms and traveling around the country before widespread travel restrictions. They estimated that 86% of infected people showed little to no symptoms and 55% of documented infections came from that group of asymptomatic people.

"In the past, contact tracing was used because you could find out who was infected, but without enough tests and lab space we haven't been able to do that," said Mariner, who said it has forced us to rely to a high degree on social distancing to slow the spread of the disease.

"It's appalling. We are very, very much behind the eight-ball," she said.

©2020 Cape Cod Times, Hyannis, Mass. Distributed by Tribune Content Agency, LLC.

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