Thread by @internetfreedom

Today, we look at India's new Health Data Management Policy. How well does it do on protecting the people's consent, data privacy and security? Is it inclusive, coercive, or too lenient with the private sector's access to your health data?🧵

1/n

internetfreedom.in/analysing-the-…

First, some positives: the HDMP centres privacy, user autonomy, and explicit & informed consent as its guiding principle. It gives certain rights to users on their medical data, including the rights to determine if they want their data erased or accessed by certain entities.
2/n

But if you've had the #CovidVaccine - you'll notice a Unique Health ID number has been issued on the certificate without consent or any prior information. This is at odds with the consent framework the Health Data Management Policy claims to uphold.
3/n

nationalheraldindia.com/india/modi-gov…

The Health Policy also takes for granted one-time, broad consent to imply as an umbrella. This is problematic as users may not be able to withhold consent for specific info, like: abortion, substance use/dependence, HIV/STI status, suicide attempt & other mental illnesses.
4/n

India's low digital literacy rate (~30% use the internet to access govt services), alongside the absence of a data protection law, also hampers the people's ability to give informed consent for protection & privacy in their health data management.
5/n

internetfreedom.in/analysing-the-…

The Health ID may be similar to Aadhaar-based registration- “‘voluntary’ on paper, but made mandatory by certain institutions, both government-owned and private”. We know #CovidIsNotOver & this could intensify the crisis for many marginalised groups! 6/n

inc42.com/buzz/aadhaar-l…

The Policy also allows health data companies to share that data with other entities, including insurance & pharmaceuticals. Instead of serving public interest, this may lead to data mining where marketing & sales strategies would benefit off user data without their consent.
7/n

In a nutshell, we suggest a *stronger consent framework* that values specific instead of one-time consent, explicit clarity that mandatory participation isn’t necessary for certain healthcare benefits, active work on improving digital literacy & a data protection law.
8/n

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