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Healthcare efficiency at the cost of privacy

India’s latest initiative of an Aadhaar-like Health ID for every Indian could ease healthcare services, no doubt. But it also raises big questions about the extent to which a government should have access to personal information of such nature, and the risk of data leaks from a widely-linked central database, the proposed national health stack. Given the covid context, the National Digital Health Mission was among the highlights of Prime Minister Narendra Modi’s Independence Day speech on Saturday. It will bring a “revolution” to the country’s health sector, he said, laying out the benefits of a digital ID for everyone that would link online all records of test results, diagnoses, prescriptions and other aspects of illness. Every detail will be only a few clicks or swipes away. It would enable high efficiency for sure. Doctors could attend to an emergency case, for example, with alacrity. Unlike some networks of this kind abroad, which emerged from billing systems, this one is said to be patient-oriented, with a software system that can let private services join its portal. Beyond its offer of expedience, the analysis of its anonymized data could have research value, too. In time to come, it could even guide public health policy.

To the extent that the scheme deploys technology for a public cause, its broad objective is laudable. It is meant to be voluntary, not coercive, and its confidentiality is said to be assured. Yet, network effects and its adoption by health providers will make it hard to opt out of. Also, since we have no law that grants us explicit ownership of our data, it could compromise our privacy—which is part of our fundamental right to life—and expose us to data misuse. If Aadhaar was vulnerable, this could be too. Moreover, even if safeguards are put in place, that would still leave our history of ailments available to the state. In the post-pandemic phase, a perception seems to have taken hold that we should all be aware of the health status of others. Aarogya Setu, our covid tracker app, underlines the value of such data as a public good. Given the infectivity of this disease, sharing information is clearly useful in fighting it. But what applies to our current health crisis need not apply to all medical conditions and illnesses.

Old reasons for letting every citizen retain secrecy on health are still valid. After the HIV scare, for example, one worry was social life marred by a new kind of untouchability. Low levels of literacy on various ailments and conditions—say, of a psychiatric nature—and false assumptions drawn from sketchy knowledge can add up to give patients even more misery. Those who do not wish to bare themselves to state agencies should not find themselves forced to yield to an invasive system. As author Yuval Noah Harari has cautioned, today’s covid-constrained circumstances are conducive to a wholesale invasion of what we guarded earlier as our own space. This is not to say that India’s project to pool health data should be scrapped. What we need is a robust law that assures us legal control over our data stored anywhere on our behalf. We should also allow citizens the right to be forgotten—that is, to have all their files erased if they so choose. There should be no ambiguity on these core principles. If our draft bill needs revision for all this, so be it. Healthcare for all can be achieved with new tools. But don’t let privacy short shrift. – Livemint