Scaremongering over HIV and Aadhaar

A Scroll report that patients will stop treatment revealed a lack of understanding and objectivity, adding to the misinformation.
PRASHANT REDDY THIKKAVARAPU reports

 

Health journalism in India has quite often been an ignored beat. This has changed over the last few years with online news websites like Scroll and Wire hiring dedicated health journalists. It is a challenging beat because not only does it involve translating science to English for readers but also because it comes with the very serious ethical burden of ensuring that accurate information is provided to readers without indulging in scare mongering. A recent report published by Scroll on the linkage of Aadhaar numbers to the identity cards of HIV patients is an example of just how tricky it can be to maintain this balance.

The story titled ‘Why Aadhaar is prompting HIV positive people to drop out of treatment programmes across India’ explains how HIV positive patients are dropping out of antiretroviral treatment because these government run treatment centres are insisting on patients linking up their Aadhaar numbers to existing patient ID cards.

The report explains that patients worried about their status being revealed to their family or friends are choosing to drop out. These concerns are not exactly new, having been voiced the first time a few months ago in a report published by the Hindustan Times in April of this year. That report had forewarned of some of the issues raised in the Scroll report, stating the following:

“Social worker Sudheer Bhargava, who is working for the welfare of AIDS patients for the past two decades, said, “When government claimed that identity of a patient would not be disclosed to even his/her spouse then why should they ask for the Aadhaar card?”

Such a situation might trigger a major problem in the society in future as AIDS patients would prefer not to be treated and it would be detrimental not only to their health but also to the society, he added.

By the normal standard of Aadhaar horror stories, this one ranks among the worst of the worst. It was no surprise therefore that this Scroll report went viral and one only wonders how many more HIV patients have dropped out of treatment programmes after reading this report.

But does Aadhaar really make an existing situation worse?

My complaint with this story is that it does little to get an independent or accurate comment to validate or refute the privacy concerns aired by the HIV patients that it has interviewed.

"By the normal standard of Aadhaar horror stories, this one ranks among the worst of the worst"

 

This was an important and required exercise because there is a lot of misinformation out there about Aadhaar from both the government and critics. In this particular case, it appears that most of these treatment centres already have patient identity cards and maintain detailed records of treatment of individual patients to track their treatment regimen. As with any other government records, there is obviously a danger of this information leaking out, regardless of Aadhaar linkage.

In fact, the Hindustan Times story explains how the staff at the treatment centres freely disclosed identities to evaluators and this was in the pre-Aadhaar era. In other words, the problem is with the lack of adequate privacy and data security training for the staff managing these treatment centres. This is a problem across India where people handling sensitive personal information are not trained in data security practices.

But getting back to the Scroll report, how does linking existing patient identity cards to Aadhaar numbers increase the risk? The Scroll report doesn’t really provide complete information in this regard. It only narrates the fears explained by the patients and takes an expert comment from one of the Aadhaar critics to validate the fears expressed by the patients.

Let’s take as an example the following extract of the Scroll report:

Activist Chandrika, who works with the Karnataka Network of Positive People, does not mind when people when people identify her with her work to prevent and control HIV and AIDS. However, she is uncomfortable with her identity as a HIV positive person influencing every aspect of her life, whether it is something as mundane as going to a ration shop.

She said that even HIV activists like her are apprehensive about linking Aadhaar with their patient identity cards. “Everyone does not know about me,” she clarified. “I do not have the courage to stand up to society.”

The statement by the activist above doesn’t really explain how linking Aadhaar with the patient identity card exposes her identity to every person and influences even her trip to the ration shop.

"How does linking existing patient identity cards to Aadhaar numbers increase the risk? The Scroll report doesn’t really provide complete information in this regard"

 

When an Aadhaar number is linked to an existing patient number and medical record in the treatment centre, the information is not automatically transmitted to the UIDAI – the information remains only on the records of the treatment centre.

Even if, and when, a biometric authentication is carried out by the treatment centre or hospital to authenticate the ID of the person (a lot of service providers in India do not carry out authentication while asking for Aadhaar numbers), the UIDAI will only record information pertaining to the agency which has requested the authentication and will not have any access to details of the transaction for which authentication was carried out.

For example, if a hospital insists on an authentication as a prerequisite for consulting with its doctor, it will scan either the fingerprints/iris of the patient and transmit the  information to the UIDAI which will match the biometrics transmitted from the hospital and confirm or deny the identity of the patient. If requested by the hospital, the UIDAI can  transmit back to the hospital the information stored on its database (which is basically the same information displayed on the Aadhaar card).

The authentication transaction does not provide the UIDAI with any of the information regarding the doctor or kind of treatment being sought by the person. That is how the system is designed. Anybody looking at the authentication record will know that a hospital has sought authentication for the person in question but will not know the purpose for which the patient has visited the hospital.

Further, even the authentication record stored by the UIDAI is deemed to be confidential under the Aadhaar Act and cannot be shared with anybody except with the permission of a court of law. Thus, linking Aadhaar to the HIV patient identity card does not really increase the risk of identities being exposed.The greater danger to privacy is from the staff of the treatment centres who can leak information on purpose or inadvertently, regardless of such information being linked to Aadhaar numbers.

The Scroll report consults only Professor Reetika Khera of IIT-Delhi for validating the fears of the HIV activist quoted above. Professor Khera is a well-known critic of Aadhaar and has done significant work demonstrating how Aadhaar has impeded access to rations etc.

Her exact quote to Scroll is reproduced below:

The fears are not totally unfounded. “Data mining techniques allow anonymised datasets, that are innocuous independently, to be combined together to reveal highly personalised information,” said Reetika Khera, associate professor of economics at Indian Institute of Technology, Delhi. “This is a concern that data security and legal experts have been highlighting.”

The data mining techniques that Khera describes, while possible, are extremely sophisticated and are predicated on the release of patient records by NACO and can happen with or without linking the patient records to Aadhaar numbers. She does not explain the complexity of the process or the actual probability of successfully mining such information.

This was an important discussion because, as it reads, the Scroll report gives the impression that the Aadhaar linking has significantly compromised the privacy of the patients and there is now a danger that more HIV patients will drop out of treatment programmes after reading the Scroll report.

Reporters and objectivity on Aadhaar

I’ve been following and writing about the Aadhaar program for the last few years and in my experience the debate is extremely polarized. Criticize aspects of Aadhaar and a legion of Aadhaar critics will praise you but point out a flaw in their arguments and you get pilloried with ad hominem attacks.

I’ve experienced both in the last two years. I wrote six critical pieces on Aadhaar for the Caravan’s blog, the Scroll and the Wire and was in the good books of the Aadhaar critics for a while. I then wrote one piece for the Wire pointing out that the Aadhaar Act would likely be upheld on the privacy issue and I was immediately labelled a bhakt wanting a place on government committees. Such is the nature of social media commentary these days and one has to live with it.

I suspect the troll army of Aadhaar critics is also one of the reasons that there are so few within the community of Aadhaar sceptics who are willing to call out some of the inaccurate assertions being put out by their fellow travellers. It is thus all the more important for journalists to speak truth to power, in this case the battalion of critics who see a conspiracy at every turn of the Aadhaar programme.

 

The writer is an Assistant Professor at NALSAR University of Law 

 

 

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