Thread by @vsirnate

I have quickly glanced over the latest Health Data Management Policy (Draft) and its basically a laundry list of assurances about privacy protection meant to lull one into acquiescence. However, i kept looking for EXACTLY WHAT DATA will they collect and here it is in one place

Note operative phrase above "shall not be limited to". Now ask yourselves why they want caste/tribe/religious/political belief/ data?

How is any of that linked to "health"?

I'm sounding the alarm here that this is one massive population profiling exercise which will be done with your passive consent and your taxpayer money.

I am also appalled that newspapers are basically using the same dictated talking points in the exact same order

to "discuss" and "inform" the public.

The main thrust of the policy is to tell us about a complicated way to protect data which will also work on voluntary and informed consent.

This is a country where when a woman says she doesn't want to do something, all of society pounces on her. And this policy is curiously

gender blind. It does not take into account that medical information and tech has been used in India for decades to militate against women. Something like this encourages biological profiling of women and illegal sharing of data (say for matrimonial reasons) of a woman (or a man)

The policy also rests on the assumption of immediacy. That I, for example, will opt out of sharing my information over email and it will be done automatically and instantly. So my consent or lack thereof will be recorded. We all know that doesn't happen in India.

The time lag between me saying "NO don't share my info with X or Y", and by the time that choice is recorded and acted upon, will be immense. Come on, we already know this. This is a country which can't get its EPFO correct because of wrongly spelled names.

Also, why do agencies need to know about anyone's

a) sexual preferences?
b) intercourse routines?

Why? I need a good, logical answer from the governement here.

Also, in terms of sexual violence, I can see a possible problem arising. Women in India have fought very hard for a rape shield clause to be brought into trials and we got that after a long fight. Now imagine that a woman is raped and her sexual history is dredged up during

the trial of her rapist, because it is available to the defence? What will happen to that verdict?

Again, why does this govt want to know sexual habits of its population? Just focus on prosecuting rapes no?

Oh, I'm so annoyed primarily because they're dangling the idea of voluntary consent on paper, when we all know thats how aadhar happened and soon we were all forced to get one. They know if someone actually sits down to read this and takes it apart, they can't run with it.

I also want to see another point inserted that “The Govt of India will at no point in the future through litigation, policy additions or acts, etc, seek to make this a mandatory policy”.

Another safeguard to be added (in case scrapping is not an option) is no information will be gathered regarding sexual habits, identities of people and fertility of women. There are no circumstances under which this data will ever be shared with anyone.

Let me also tell you why I’m suspicious about genetic data. Under this current dispensation any semblance of “difference” is politicized.

I got my DNA profiled in 2007. The results were astounding and totally upended everything I knew about myself.

But let’s just say if you get your dna profiled you may think that everything you know about identity and YOUR identity, is fiction. Because your DNA may tell you that you’re a Lithuanian Jewish person or something. But your last name could be Gupta or Iyer.

Imagine how quickly someone like the folks in charge will capitalize on genetic differences?

So from NRC we may move to genetic NRC. Maybe it won’t happen, but I always first imagine the worst purposes for which something will be used and then after I run that worst case simulation, I assess how a policy will fare and what should be changed.

If I could speak for the Indian public I would say “I won’t cooperate”. You don’t have a right to access my privacy. Sorry. It’s too big a breach of privacy. I am not a commodity. And you don’t have the right to commoditize my biological and medical information.