Personal privacy is important during a pandemic – but less than at other times

During a disease outbreak, low-tech detective work is one of the best tools available to public health officials. When a person is diagnosed with a disease like COVID-19, the disease caused by the new coronavirus, public health experts find out where they have been recently and track down everyone they have come in contact with.

“Sometimes it is required that we know private information about a person who is infected,” said Lisa Lee, director of the Scholarly Integrity and Research Compliance department at Virginia Tech and former executive director of the government’s presidential bioethics committee. Obama.

It may also mean that they have to share some of that information, including information about someone’s health. Usually, people think about health privacy in terms of the relationship they have with their doctors and clinicians who need to keep the vast majority of information confidential – both legally and ethically. But the public health system is set up with legal permissions and protections other than a doctor’s office, and by nature it thinks differently about ethics and patient privacy.

“We think about it from the mutual commitments we have to one another and the need to protect well-being,” said Amy Fairchild, dean and professor at the College of Health at Ohio State University. “What you do is weigh the risks for the individual against the damage to the contacts of the person and the rest of the population.”

Legally there are carve-outs in health privacy laws, such as HIPAA, which allows public health officials to obtain information about a person’s health without their consent. Individual privacy and the risks that can arise from the disclosure of personal health information – such as stigma – are still critical concerns for public health officials, Lee emphasizes. They strive to collect as little information as possible to achieve a public health goal. “The principle is to collect and use as little data as possible, because it reduces damage,” she says. The information collected is also used only for public health activities.

The balance between protecting individual privacy and collecting information critical to the public changes with the spread of a disease. The amount of data that public health officials need to collect and publish changes as well. At the moment, the COVID-19 pandemic is accelerating, and there are still many doctors and scientists who do not know the disease. The collection of detailed health information is therefore more useful and important. That may change as the outbreak progresses, Lee says.

For example, if the virus starts circulating in the community, it may not be so important to know exactly where a sick person has been. If the virus is already everywhere, that information does not have that much extra benefit for the community. “It depends very much on the maturity of an epidemic,” she says.

Digital tracking information is ubiquitous today and that can make data collection easier. In Singapore, where there is extensive monitoring, publicly available data details where people with and have been with confirmed cases of COVID-19. The Iranian government built an app for people to check their symptoms which also include a geo tracking feature. When deciding to use such devices, Lee says, the same public health principles should still apply.

“If a public health official knows where a person has gone, it’s public information – that’s no different. It’s a lot easier to do now, but it doesn’t make it any more or less well,” he says. she. “Keeping track of where people go and who they interact with has been something public health officials have been doing for centuries. It’s just easier with digital information.”

In addition, just because personal information about a person and their health is important to a public health officer does not mean that information is important to the general public. Therefore, despite questions from reporters, public health officials have provided only a limited amount of information about the people who had the first few cases of COVID-19 in the US.

During the polio epidemic in the U.S., health departments published the names of people with confirmed cases of the disease in the newspapers – a practice that would be far out of reach today. But that didn’t stop people in the U.S. from seeking information about the few cases of Ebola in the country during the 2014 outbreak.

However, people did not need that information to protect themselves. “Having someone’s name doesn’t protect you,” says Fairchild. “That’s generally the principle of public health surveillance. There are emotional reasons the public may want to know, but it doesn’t protect you and shouldn’t change what you do.”

Health officials are concerned with the stigmatization of individuals or communities affected by diseases, and therefore they only want to disclose the necessary information to the public. Anti-Asian racism in the U.S. and other countries around the world increased with the outbreak as the new coronavirus originated in China. People who were on cruise ships reported positive cases handle angry phone calls from strangers when they returned home, and residents of New Rochelle, New York, the first containment zone in the U.S., said that they are concerned that their birthplace is forever associated with the virus.

“This type of damage at group level is worrying,” says Lee. “That’s why we’re also concerned about the privacy of group identity. I am nervous and sad to see that his head is starting to protrude. ”

People cannot expect the same level of personal health privacy during public health emergencies related to infectious diseases as they do in other aspects of their health. But the actions that public health officials can take, such as collecting information, aren’t meant to limit privacy, Fairchild says. “It’s to protect the wider population. The principle we embrace is the principle of reciprocity. We recognize that our freedom is limited, but we do it for others.”