COVID-19, Medical Privacy, and Misinformation – A difficult tripod to balance?

Few days back, I received a call from a close friend whose brother had tested positive for the COVID-19. Worrisome. However, what was further concerning was the misinformation being spread by the media, including one of the leading national newspapers!

The father of the patient is a high-ranking medical personnel in a reputed hospital, and evidently he did his best to report and quarantine his son at the earliest possible opportunity – but the story didn’t end there. Some doctors came forward to take this opportunity to complain about negligence on the part of the father of the patient and the media houses were quick enough to report this with as much details as they could gather. Soon, the name and other personal details of the patient and his father were circulating in public via various social media and networks which didn’t end even after the concerned authorities came up with unambiguous clarifications denying the alleged negligence.

Incidents like these make us think about the relevance of medical privacy, especially in a mob-controlled country like India. (I say ‘mob-controlled’, to indicate at the magnitude and number of crimes committed by motivated mobs throughout the country - to supplement the claim, it would suffice to quote the recent news of a man being beaten in Maharashtra for sneezing in public.) The questions involved, however, are not so easy to answer. Tackling pandemics like COVID-19 demands every last bit of public cooperation, and in order to ensure public cooperation there must be public availability of most extensive bits of information. This, then, calls for a very fine balance between medical privacy and the right of the public to know – a very delicate balance which is vulnerable to even the slightest instance of misinformation!

The policy weighing of medical privacy vs. public health is not a very recent challenge, but is as complicated as it gets – and with the increasing focus on privacy rights each passing day, the relevant trade offs gets even more difficult to ascertain. On the simplest terms, while medical privacy has roughly the same arguments as personal privacy in its favour, the arguments backing public health fall primarily into two camps: one arguing the need for personal information of patients for public order and safety, and other administrative enforcements, and the other arguing the need thereof for the sake of extensive medical research and development.

The second strand of argument that advocates medical research over medical privacy holds little water, in my opinion. Medical research is necessary, but it can well be carried out without personal information as such. While person-related information may be disclosed for the sake of medical research, there’s not much reason as to why personal information should be disclosed for medical research to be carried out.

The first strand of the argument, however, is strong enough to demand a critical analysis. Certain situations, especially during pandemics such as the COVID-19, require prompt administrative action and public assurance. And efficient tackling thereof may, rarely though, require disclosure of personal information of the patients.

The extent of such disclosures can vary widely, however. Talking of the present situation, for example, some governments may consider it wise to disclose only the locality where the patient lives, where as some governments may decide to disclose even the hospital the patient is admitted in. While disclosing, the goal, however, is to be kept in mind – comfort the worried public, assure the hypervigilant people, and facilitate public cooperation. The disclosure shouldn’t go beyond that.

Here creeps in the possibilities of ‘misinformation’, or worse, ‘disinformation’. Chances are really high that media houses and unrestrained social networking users may cross the boundaries. The crossing of boundaries that I’m referring here can be in either of the two ways: either by sharing wrong information, or by sharing ‘more than necessary’ information. Wrong information can cause unnecessary panic in the public, while ‘more than necessary’ information (such as the name and other personal details of the patient) can be dangerous or even life-threating for the patient.

Fixating the ‘who’ and ‘why’ of the information sharing can act as a guiding lamp for the same. ‘Who’ can share the information? – only authorised sources. ‘Why’ such information needs to be shared? – only for maintaining public order and/or public health. Remembering this ‘who’ and ‘why’ rule and letting it guide our information sharing behaviour can not only help us combat COVID-19 successfully, but can also help us combat disinformation in the long run.