Naming, not shaming — patient privacy restrictions facilitate spread of coronavirus pandemic

At the core of the coronavirus pandemic is the rapid rate of infection and absence of full disclosure. By keeping the identity of infected patients or exposed individuals secret, the federal government risks escalating the problem to unfathomable magnitude and fueling further paranoia. 

The problem is government officials cannot legally disclose coronavirus victims’ names because of the Health Insurance Portability and Accountability Act (HIPAA). Patient privacy protections are well intended, but threaten to cripple any effort to nip contagion in the bud. If a murderer were on the loose on the streets of Seattle or New York, police would alert the public of the perpetrator’s identity.  But respect for patient privacy is trumping common sense by obscuring the tracks of a stealthy killer virus.

The United States still has a remarkably narrow window to address this crisis and is squandering this chance by failing to publicize every case. Several weeks ago, a man with the coronavirus socialized with attendees at the annual Conservative Political Action Conference (CPAC), shaking hands with senior government officials who later that day shook hands with President Trump. 

This victim’s identity was kept secret with the exception of a few Republican elites whom the victim subsequently informed of his infectious status. Every other attendee was left to panic and speculate about their potential exposure. If the public knew the identity of this individual, then everyone who interacted with him could take steps to self-quarantine or get tested if they develop symptoms. This example is just the tip of the iceberg of what is happening throughout the country because of patient privacy.

Laudable efforts to “flatten the curve” by limiting social interactions are destined to fail if patient privacy is upheld at the cost of the public welfare. The useless hippo in the room is HIPAA. Because of HIPAA, a chain of potential contamination is left wide open and the welfare of uninfected citizens is sacrificed in the interest of patient privacy. 

HIPAA was enacted in 1996 with the intention of protecting employees and their families from losing insurance coverage by preventing disclosure of medical information. Over the years, the unintended consequences of HIPAA have encompassed not only uncontrollable costs of $8.3 billion annually, but also gridlock when sharing of medical information could result in public benefit. The unyielding effect of HIPAA is one of omission that impairs the ability of public agencies to control and manage epidemics like COVID-19.

Unlike other diseases, infection with the coronavirus carries no inherent social or cultural stigma. Knowing the name, location and mobility network of these cases can make a difference, but waiting until the number becomes unmanageable is beyond unwise. 

Lives of U.S. citizens will be sacrificed because of blind adherence to patient privacy. Supporters of HIPAA have argued that disclosure of a patient’s identity is dangerous, and some have even claimed it goes against the Hippocratic Oath. However, first and foremost, the Hippocratic Oath is about “doing no harm”. Public good is paramount to individual privacy, especially when disclosure of the “private” information poses negligible to no harm for the individuals in question. Preserving their anonymity however, does result in potential harm of unfathomable magnitude.

To nip this crisis in the bud, HIPAA needs to bend. Health officials must recognize that providing a means for disclosure of infected individuals’ status may help curb further spread. Mitigating risks through transparent disclosure is a more effective step than fueling further anxiety by shrouding the crisis with a cloak of secrecy. Privacy is important, but when protection of privacy becomes the means for public harm, both tangible and intangible costs need to be considered.

Kim-Lien Nguyen, MD, is an assistant professor of medicine at David Geffen School of Medicine at UCLA and a practicing cardiologist. The views expressed are those of the author’s.