The Right to Privacy: A delusion?
Medicine, treatment and your survival: the case that is yet to come
I know it’s been a while since my last post, and that’s because I was a little busy working. But I’ll make sure I keep at it, and write more regularly. This week’s post is about health and privacy. Hope you find it informative. Looking forward to your comments.
Creative Credits: Rachel, a super kewl and creative person
1. With Pharmaceutical stock prices surging, while Britain and some European countries declaring the second phase of the lockdown—raises more than a few eyebrows, as far as saving humanity is concerned. The sudden surge in contact tracing apps where the air is filled with accusations disguised as questions— somehow, criminalises your questions, as far as data collection is concerned. A month ago, I took the Covid-19 test, since somebody in the office I was interning at, was infected. I tested negative. But, the whole process was such a mentally draining experience. It’s one of those times when you know the information regarding the virus, but fail to process it when you are part of the whole thing. In other words, you really don’t understand what it means unless you go through it.
2. The annoying thing about the whole thing was that the clinic I went to refused to take the test if I didn’t surrender my Aadhaar Card No. Given that I was desperate to finish it, I complied. Since then, there’s been a nagging thought regarding this whole thing. In the sense, it is in times like these, our fundamental beliefs are tested. Yes, I am entitled to the right to privacy, but when confronted with a contagious disease what does that mean? You may be of the opinion that the clinic wanted it merely as an ID card, and to that, I don’t disagree. But, at the same time, why can’t I use some other government issued card that proves my identity? Ideally, I should be able to. In this post, I try to tell you the reasons why I find Hospitals and clinics, using our Aadhaar Cards to verify our identity—a source of concern.
Hospitals, Pharmaceuticals, Your Data and Money
3. If you are not covered by any Governmental insurance scheme, and you register yourself as a patient in a hospital—one of the things you need to submit is a copy of your Aadhaar Card. If not, then I like your hospital. Why I find this whole thing problematic is because: there is reasonably conceivable high chance, that your hospital sells your data to pharmaceuticals. Among the dozen of forms you fill-in, one will be regarding consent. And there are many facets to this. For instance, who gives consent on behalf of the patient, if they are unsound of mind. Or, the risks you consent to undertake as part of your treatment at the hospital. After all, cure is a funny word in the dictionary, and you should check out why. In the midst of this chaos, what you fail to recognise is that—you, have consented to surrendering your data to a third party. Now, who is this third party? That usually depends on the hospital. Broadly, these third parties might be linked to pharmaceuticals, research labs or even other hospitals. Although most of them claim to sell your data without surrendering personal attributes such as your name, sex, residence etc. Why does the status of your health not fall within ‘personal attributes’? This is what I find wrong. How is this different from you hiding the status of your health from your relatives or your near ones? We all know somebody who believes cancer, AIDS and other life-threatening diseases are a result of some supernatural voodoo bull crap. Then again, you may say that as long as my personal attributes are not revealed, for the sake of science and the future of humanity—I don’t mind if somebody uses this kind of data for research. That’s very cool and idealistic of you though.
4. I am not a tech expert, but even I know that anonymity is not absolute. In other words, even if your personal identity is not revealed, I bet there are several mechanisms to enable cross-referencing of data points to figure out whose health status they are dealing with. Let’s say in one database, you have access to a wide range of Aadhaar Card Nos. and on the other hand, you have access to the data by the hospital. If the Government mandates (which, they almost have) every hospital to link your health status to your Aadhaar Card —it’s just a bomb waiting to explode. Again, why does this matter? Because privacy does. There’s always a commercial angle to exploiting the gap between the things you know and the things you don’t. If I maybe so bold, that’s also one of the reasons Lawyers exist.
5. So what can they do with this? If this data is sold to ‘data-brokers’ it’s not just the compromise in privacy, it is a new form of currency. Although morally reprehensible, you got to admit: what an easy way to sell your soul, and make some money. This does not entirely discount the goal of developing better medicines. In fact, the access to such vast data, if processed with the goal of developing better medicines: might even contribute to the betterment of humanity. But I am not convinced that pharmaceuticals function on this noble ideology. Knowing the status of the health of the population in a particular area gives them the power of enabling access to certain kind of medications that is not accessible in a certain region. On a darker note, vesting the power to control the supply-demand economics of medicines. In other words, concern pitted against hope.
Genetics, Insurance, Loans and Bias
6. The other area why I find hospitals synchronising your health to Aadhaar Cards is because—they are broadening the scope of increasing bias; this can be in any industry that requires your Aadhaar Card as a matter of identification. For instance, what if I told you that your insurance could depend on the status of your health i.e. the scheme of insurance. Don’t believe me? Probably the protector of Justice might change your mind. In the case of United India Insurance Company Limited v. Jai Parkash Tayal, the Petitioner alleged that his insurance company discriminated against him on the basis of genetics. The legal issue before the Delhi High Court was whether the insurance contracts that excluded genetic disorders were legal and valid. The Court held that such insurance contracts were discriminatory and not valid. This was in 2018. With Moore’s Law, you can only imagine the status and utility of tech today, and what that means to us.
7. Now that you know that insurance is sorta dependent on genetics, it is reasonable to predict the tools that will help increase this. This free-for-all access to the status of your health doesn’t just risk the nature of your insurance scheme, but also the kinds of loans you may want to avail or even your employment prospects. By increasing the ease of acting on bias, the gap between the haves and have-nots deepens. I do not know if it’s far-fetched in stating that certain medicines can be created to make sure that the health of a population remains the way it does. In other words, playing devil’s advocate with the word ‘cure’.
8. Given that I am not an expert on medicine, tech or public policy, my recommendations might be half-baked. Nonetheless, I am of the view that mandating compliance to the rule where hospitals should synchronise the status of your health is—not okay. To say the least, centralisation of this kind of information is a favourite plot for every science fiction author, which tends to have a disastrous ending. Plus, for the sake of humanity, articulate the kind of data that can be sold. Let me rephrase, ensure compliance to this rule with more than just heavy penalties. I bet there are several other recommendations that are more suited to this problem. To which, a variety of stakeholders voices should be heard. Attempting to regulate something we don’t understand is one of those silent epidemics that hasn’t been diagnosed yet.
9. I have been told privacy protects my identity and existence as human, but then you (as in the State) do things that say otherwise. This reminds me of the way we are taught about our right to equality, hypocritical at best. Which leads me to my next question, is our recognition to the right to privacy—delusional?