Data and denial of healthcare

At a recent conference on innovation in global health, a German colleague asked a rhetorical question — if the Nazis were in power today, with all the citizen data available to the state at its finger tips, what would happen? The answer he said, is of course, obvious. It would have been much worse. Those who were lucky to hide from the wrath of the evil, and survive, would have had a fate similar to those who were sent to the gas chambers.

The question is perhaps rhetorical when it comes to the Nazis, but not really all that far-fetched. Governments, including those in our neighborhood, have a strong record of using digital information to create an unequal, unfair and at times, brutal world. Minorities, and those who are disliked by the occupants in the high offices, can be denied basic rights, or sent to concentration camps. The US does not have an unblemished record either. It is not just data on social media about likes and dislikes, political preferences and ideologies that is the issue here.

One does not even need to be on social media for the authorities to create a profile of who you are, what you buy, and where you go. Credit card purchases are becoming ubiquitous and increasingly necessary for any travel. Phone records are no longer private. We have plenty of solid evidence, from the world over, that the people who run governments are not always the standard bearers of ethics, decency or public welfare. An authoritarian government is sometimes just a coup, or a fraudulent election, away.  In this uncertainty, what does privacy mean for a private citizen? My colleague ended his talk with a final question that asked us all: whether in a world obsessed with data, can one be anonymous anymore?

There is no doubt that a more connected, digitised world has brought new comforts to many and has increased efficiency of a whole host of processes. It all works for us, until one day, it does not. The debates about ethics of data are real and urgent. They are also sometimes painted as abstract and disconnected from reality. Nothing could be farther from the truth. Even international agencies — like UN High Commission for Refugees — have demonstrated poor capacity to handle data of the most vulnerable, the recent incidence of data sharing by UNHCR with the government of Bangladesh, and in turn with that of Myanmar, shows that these questions are no longer abstract.

In healthcare, we talk about access and equity of that access. But access is not automatic or permanent. It is granted and can be taken away. It can be weaponised to inflict pain or to exploit. As the country moves increasingly towards digitisation, and creates spiffy videos about portals and databases with the flag in the background and the patriotic music to boot, we ought to ask tough questions about not just privacy but decisions made based on the data that is available on any individual.

Let us start with the ones we do not like to acknowledge as real persons in our midst. The Bengalis and Biharis — despite being in the country for four decades or more — remain stateless and in a perpetual state of uncertainty and fear. What protections do we have for their health data? What rights do they have should someone choose to use their health data to make their life more miserable? A community scared to be incarcerated, tortured, abused or lose what little they already have is unlikely to hold the power brokers accountable. But those of us with privilege and connections, resources and clout, ought to ask: if someone with ill intentions chooses to inflict harm on them, or any of us, using our health data, would we be able to stop them?

Published in The Express Tribune, November 2^nd, 2021.

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