Centre for Internet and Society

Privacy issues exist even without Aadhaar

Admin — 2017-11-23T16:12:11Z

There is a critical need for a data privacy regulator to penalize unauthorized disclosure of personal information.

The article by Ronald Abraham was published by Livemint on November 15, 2017.

In part I, I argued that while Aadhaar can be a tool to infringe upon our right to privacy, it is merely one such; there exist other tools that can be similarly exploited. This becomes evident when you analyse each privacy issue related to Aadhaar using the National Privacy Principles framework, and compare Aadhaar’s data privacy risks to other national ID systems. We need an independent data privacy regulator, backed by a robust law, to safeguard against the risks.

Here, we explore two such data privacy issues: data disclosure and voluntariness (database linking was analysed in part I).

Data disclosure

According to the National Privacy Principle on data disclosure, “a data controller shall not disclose personal information to third parties, except after providing notice and seeking informed consent from the individual for such disclosure”.

On paper, the Aadhaar Act appears compliant with this principle as Section 29 prohibits the disclosure of personal information. Exceptions exist for courts to request demographic data, and for joint secretaries and higher ranks to request biometric data; the latter on the grounds of “national security”. However, greater clarity is required on whether individuals will be informed of data disclosures.

In practice, however, data disclosures well beyond these exceptions have taken place. A study by the Centre for Internet and Society found that nearly 130 million Aadhaar numbers had been published online by four government departments. In many cases, these were published along with information on “caste, religion, address, photographs and financial information”. If someone manages to steal these individuals’ fingerprints as well (which is becoming less difficult), one possibility is that Aadhaar-linked bank accounts can be cleaned out using micro-ATMs.

Demographic data disclosure, however, is not limited to Aadhaar. For transparency reasons, state election commission websites disclose the personal information of every person registered to vote online. Agencies scrape these databases and sell them.

Like database linking, the onus of abiding by the principle of data disclosure is on the “data controller”. The four government agencies that disclosed Aadhaar data—not the Unique Identification Authority of India (UIDAI)—are the relevant data controllers in this case. However, UIDAI has not pressed charges against them; under the Aadhaar Act, it is solely authorized to do so. Given UIDAI’s role of working with the government to enable and encourage the use of Aadhaar, it should not also be responsible for regulating them. Additionally, the Election Commission’s data disclosure norms demonstrate that the issue is bigger than Aadhaar.

This, therefore, points to the critical need for a data privacy regulator to investigate and penalize unauthorized disclosure of sensitive personal information. A strong regulator, with a clear law, will also serve as an effective deterrent for negligent disclosure practices.

Voluntariness

The ability to voluntarily opt in and out of data systems, based on informed consent, is central to the National Privacy Principle of “Choice and Consent”. Once an individual opts in, the principle clarifies that they “also have an option to withdraw (their) consent given earlier to the data controller”.

With regard to opting in, UIDAI has maintained that Aadhaar enrolment is voluntary. However, Section 7 of the Aadhaar Act and various orders by government agencies require Aadhaar to access basic services. Though exceptions are allowed, in practice they are implemented inconsistently, making Aadhaar near-mandatory.

To be sure, the choice principle states that data controllers can choose not to provide services if an individual doesn’t consent to provide data, “if such information is necessary for providing the goods or services”. However, we need more explicit guidelines on what features satisfy this condition, something that can be defined in a data privacy law.

With regard to opting out, no such UIDAI provision exists. One argument is that more data increases UIDAI’s capability to establish the uniqueness of new enrollees. However, it is unclear why this is the case because even if millions opt out of Aadhaar, UIDAI’s ability to guarantee the uniqueness of new enrollees compared to existing enrollees doesn’t diminish.

While voluntariness is actively discussed with Aadhaar, the same is not true for other IDs and data initiatives. For example, fingerprints are collected to issue Indian passports, but the use of this is not clear—raising concerns around voluntariness as well as purpose limitation.

Through this analysis, it becomes clear that data privacy issues exist even without Aadhaar. To tackle the risks to privacy, India requires a strong, competent and independent data privacy regulator, backed by a robust law.

With the recent Supreme Court judgement and upcoming hearings, we have a unique opportunity to strengthen our institutional ability to manage future risks. We must seize this opportunity to try and secure a privacy-protected future.

Ronald Abraham is a partner at IDinsight and co-author of ‘State of Aadhaar’ report 2016-17.

Research contributions from Shreya Dubey and Akash Pattanayak.

For more details visit https://cis-india.org/internet-governance/news/livemint-november-23-2017-ronald-abraham-privacy-issues-exist-even-without-aadhaar

Privacy is now a right in India. Here's what that means for the tech industry

Admin — 2017-08-31T14:35:45Z

India's top court has put tech companies on notice.

The blog post by Rishi Iyengar was published by CNN Tech on August 29, 2017.

In ruling that privacy is a fundamental right, the country's Supreme Court singled out tech firms for gathering huge amounts of data: Facebook knows who we are friends with, the justices wrote, while Alibaba studies our shopping habits and Airbnb tracks our travel.

"This can have a stultifying effect on the expression of dissent and difference of opinion, which no democracy can afford," the court said last week. "There is an unprecedented need for regulation regarding [how] such information can be stored, processed and used."

Indian internet activists hailed the decision, but warned that the debate about how tech giants collect and use data is only just beginning.

"These companies must brace for [legal action]," said Sunil Abraham, executive director of the Bangalore-based Centre for Internet and Society. "Individuals who are unhappy with the treatment of their personal information can now take them to court, because it is an infringement of a fundamental right."

The UN Conference on Trade and Development said that while the United States, European Union, China and other nations have established similar protections, roughly 60 developing countries have no rules that govern how the tech industry should collect and use personal data.

Activists say legal protections are needed to keep tech firms from irresponsibly harvesting data. Internet giants including Facebook and Google have built their business models around aggregating information about their users, and then marketing it to retailers. Some firms sell the data to third parties.

The global battle lines are being drawn: The U.S. government recently asked the Supreme Court to compel Microsoft (MSFT, Tech30) to hand over user data stored overseas, and the U.K. has proposed legislation that would allow users to ask platforms to delete their posts. The EU has taken several tech firms to task over privacy concerns.

Now the debate is heating up in the world's largest democracy. Nikhil Pahwa, an internet activist and founder of tech website MediaNama, said the Indian court's ruling gives campaigners a major tool in the fight to keep data private.

"We've now been given a right which allows us to argue for our rights against practices of different companies," Pahwa said.

The ruling could even cause problems for the Indian government, which is pushing its own controversial biometric ID card program. Nearly 1.2 billion people -- 92% of India's population -- have registered for the Aadhaar scheme, which links their fingerprints and iris scans to a unique 12-digit number.

The program is designed to make welfare payments and medical services much more efficient. But skeptics have bristled at recent orders that seek to make the biometric ID mandatory when opening a bank account or filing taxes.

"I don't want an Aadhaar number," Pahwa said. "I want to have the right to live in my country ... in a manner that I'm not being surveilled and watched."

Activists are also worried about how their data may be used and protected by third parties. Microsoft, for example, announced in July that it had integrated the biometric program with Skype Lite, a low-bandwidth version of the communications app made for the Indian market.

"If ... your fingerprints are your passwords -- and they're passwords that you can't change -- once they're gone they're gone forever," Pahwa said or potential data leaks.

The Indian government, which argued before the Supreme Court that privacy was not a fundamental right, said following the ruling that it was working on a stringent data protection law. Technology minister Ravi Shankar Prasad told local media that the new rules would be in place by December.

The National Association of Software and Services Companies, which represents India's tech industry, welcomed the Supreme Court's verdict.

"This landmark judgment will ensure that protection of citizen's privacy is a cardinal principle in our growing digital economy," NASSCOM president R Chandrashekhar said in a statement. "It will enhance citizens' trust in digital services."

Microsoft (MSFT, Tech30), Google (GOOGL, Tech30), Facebook (FB, Tech30) and Uber, which all operate in India, did not respond to requests for comment. Local tech players including Ola and Flipkart also did not respond. Amazon (AMZN, Tech30), which is investing heavily in the country, said that it complies with local laws and "has a high bar" for data protection and privacy.

Abraham, from the Centre for Internet and Society, said that "regulatory innovation" is needed to rein in large firms without making life difficult for Indian startups.

"We need to prevent the internet giants from dancing around the regulations with large legal teams, and we need to prevent onerous regulations from crushing emerging firms," he said. "If our lawmakers and parliament are innovative, we can leapfrog straight to the age of big data."

For more details visit https://cis-india.org/internet-governance/news/cnn-tech-august-29-2017-rishi-iyengar-privacy-is-now-a-right-in-india

Privacy is not a unidimensional concept

amber — 2017-08-07T08:02:20Z

Right to privacy is important not only for our negotiations with the information age but also to counter the transgressions of a welfare state. A robust right to privacy is essential for all citizens in India to defend their individual autonomy in the face of invasive state actions purportedly for the public good. The ruling of this nine-judge bench will have far-reaching impact on the extent and scope of rights available to us all.

This article, written by Amber Sinha was published in the Economic Times on July 23, 2017.

In a disappointing case of judicial evasion by the apex court, it has taken over 600 days since a reference order passed in August 11, 2015, for this bench to be constituted. Over two days of arguments, the counsels for the petitioners have presented before the court why the right to privacy, despite not finding a mention in the Constitution of India, is a fundamental right essential to a person’s dignity and liberty, and must be read into not one but multiple articles of the Constitution. The government will make its arguments in the coming week.

One must wonder why we are debating the contours of the right to privacy, which 40 years of jurisprudence had lulled us into believing we already had. The answer to that can be found in a series of hearings in the Aadhaar case that began in 2012. Justice KS Puttaswamy, a former Karnataka High Court judge, filed a petition before the Supreme Court, questioning the validity of the Aadhaar project due its lack of legislative basis (since then the Aadhaar Act was passed in 2016) and its transgressions on our fundamental rights. Over time, a number of other petitions also made their way to the apex court, challenging different aspects of the Aadhaar project. Since then, five different interim orders by the Supreme Court have stated that no person should suffer because they do not have an Aadhaar number. Aadhaar, according to the court, could not be made mandatory to avail benefits and services from government schemes. Further, the court has limited the use of Aadhaar to specific schemes: LPG, PDS, MGNREGA, National Social Assistance Programme, the Pradhan Mantri Jan Dhan Yojna and EPFO.

The real spanner in the works in the progress of this case was the stand taken by Mukul Rohatgi, then attorney general of India who, in a hearing before the court in July 2015, stated that there is no constitutionally guaranteed right to privacy. His reliance was on two Supreme Court judgments in MP Sharma v Satish Chandra (1954) and Kharak Singh v State of Uttar Pradesh (1962): both cases, decided by eight- and six-judge benches respectively, denied the existence of a constitutional right to privacy. As the subsequent judgments which upheld the right to privacy were by smaller benches, Rohatgi claimed that MP Sharma and Kharak Singh still prevailed over them, until they were overruled by a larger bench.

The reference to a larger bench has since delayed the entire matter, even as a number of government schemes have made Aadhaar mandatory. This reading of privacy as a unidimensional concept by the courts is, with due respect, erroneous. Privacy, as a concept, includes within its scope, spatial, familial, informational and decisional aspects. We all have a legitimate expectation of privacy in our private spaces, such as our homes, and in our personal relationships. Similarly, we must be able to exercise some control over how personal data, like our financial information, are disseminated. Most importantly, privacy gives us the space to make autonomous choices and decisions without external interference. All these dimensions of privacy must stand as distinct rights. In MP Sharma, the court rejected a certain aspect of the right of privacy by refusing to acknowledge a right against search and seizure. This, in no way prevented the court, even in the form of a smaller bench, from ruling on any other aspects of privacy, including those that are relevant to the Aadhaar case.

The limited referral to this bench means that the court will have to rule on the status of privacy and its possible limitations in isolation, without even going into the details of the Aadhaar case (based on the nature of protection that this bench accords to privacy, the petitioners and defendants in the Aadhaar case will have to argue afresh on whether the project does impede on this most fundamental right). There are no facts of the case to ground the legal principles in, and defining the contours of a right can be a difficult exercise. The court must be wary of how any limits they put on the right may be used in future. Equally, it is important to articulate that any limitations on the right to privacy due to competing interests such as national security and public interest must be imposed only when necessary and always be proportionate.

It will not be enough for the court to merely state that we have a constitutional right to privacy. They would be well advised to cut through the muddle of existing privacy jurisprudence, and unequivocally establish the various facets of the right. Without that, we may not be able to withstand the modern dangers of surveillance, denial of bodily integrity and self-determination through forcible collection of information. The nine judges, in their collective wisdom, must not only ensure that we have a right to privacy, but also clearly articulate a robust reading of this right capable of withstanding the growing interferences with our autonomy.

For more details visit https://cis-india.org/internet-governance/privacy-is-not-a-unidimensional-concept

Privacy is culture specific, MNCs hit by Aadhaar, says TRAI chief

praskrishna — 2017-06-07T13:57:08Z

A clutch of petitions filed by those opposing what they call the unchecked use of Aadhaar is currently in the Supreme Court.

The article by Pranav Mukul was published in the Indian Express on June 1, 2017.

Questioning the anti-Aadhaar campaigns by non-governmental organisations and civil society groups, Telecom Regulatory Authority of India’s (TRAI) Chairman R S Sharma, who is also the former Director General of Unique Identification Authority of India (UIDAI), said that various multinational companies were being affected by Aadhaar as it was in conflict with their attempts to create their own database of users.

“It’s making a mountain out of a molehill. There are motivated campaigns being launched. Various multinationals are getting affected. There are companies, which are creating their own identities. Someone has called it digital colonisation. The fingerprint scanners on smartphones can be easily used for authenticating Aadhaar but they don’t allow it. A lot of fraudulent or benami transactions can go down because of Aadhaar,” Sharma told The Indian Express. While he refused to elaborate on these multinationals, the remarks are an apparent reference to Silicon Valley giants such as Facebook and Google.

Sharma’s remarks come at a time when civil society groups have flagged serious concerns on issues such as privacy and accountability that arise from the Centre’s increasing use of Aadhaar. A clutch of petitions filed by those opposing what they call the unchecked use of Aadhaar is currently in the Supreme Court.

Recently, a Bengaluru-based NGO — Centre for Internet & Society (CIS) — released a report suggesting 130 million Aadhaar numbers were leaked on government portals. CIS later updated its report to say that there were no “leaks” or “leakages” but a “public disclosure”. The UIDAI served a show-cause notice to CIS, asking it to explain its claims.

The TRAI chairman defended UIDAI’s decision to send the notice to CIS and said that there were no leakages from Aadhaar, or decryption of of biometric data from the UIDAI server. At the same time, Sharma made a case for having a comprehensive data protection law in the country. “There is a need for a larger data protection law. In today’s digitally connected world, data protection law is a must. Data security, its protocols, rules, responsibilities, accountabilities, damage, payments, compensations, all these issues must come in that law,” he said.

“Aadhaar Act, itself, is very self-contained, which takes into account all data protection and privacy issues,” Sharma said, adding that privacy was a cultural concept. “Privacy is a culture specific concept, which they are trying to import here. Except for NGOs, has any individual or poor person complained, or filed a case about privacy?” he asked.

In a recent interview to The Indian Express, Minister of Law & Justice and Electronics & Information Technology Ravi Shankar Prasad had tried to allay fears of any loopholes in the Aadhaar security system and said “this systematic campaign against Aadhaar comes as a surprise for me”. He said that the voter ID information was also in public domain, but “I don’t see any campaign there”.

For more details visit https://cis-india.org/internet-governance/news/indian-express-june-1-2017-pranav-mukul-privacy-is-culture-specific-mncs-hit-by-aadhaar-says-trai-chief

Privacy International's Trip to Asia

praskrishna — 2012-04-25T09:58:12Z

In February 2012, the PI team travelled to India, Bangladesh and Hong Kong to meet with our local partners in the region and speak at four conferences they had organized. We also got the chance to interview our partners in India and Bangladesh on the privacy issues facing them at the moment - this video is the result of those conversations.

PI spent the first half of February in Asia, visiting our regional partners and speaking at events. Our trip began in Delhi, where the Centre for Internet and Society (in collaboration with the Society in Action Group) had organized two consecutive privacy conferences – an invite-only conclave on Friday 3rd February and a free symposium open to the public on Saturday 4th February. The conclave consisted of two panels, the first focusing on the relationship between national security and privacy, the second on privacy and the Internet. We were seriously impressed with the calibre of the speakers CIS and SAG had gathered – the panels included a Supreme Court Advocate, a Member of Parliament and the Former Chief of the Research and Analysis Wing (the Indian equivalent of MI-6 and the CIA) – but Gus and Eric held their own!

The All India Privacy Symposium the next day was partly intended as a public showcase of the amazing research Privacy India, CIS and SAG have conducted over the past two years, including consultations in Kolkata, Bangalore, Ahmedabad, Guwahati, Chennai and Mumbai. The event was organized into five panels: Privacy and Transparency, Privacy and E-Governance Initiatives, Privacy and National Security, Privacy and Banking, and Privacy and Health. A few themes recurred throughout the day – perhaps the most prominent being the repeated allegation that the Indian government's technological illiteracy is putting its citizens at risk. One panellist described how an RTI (right to information) request had recently revealed that the government had no idea how many of its own computers had been hacked or how much data had been stolen – even though this information has been in the public domain since the Wikileaks diplomatic cable releases.

On Sunday, our IDRC funder in Delhi very kindly lent us his beautiful house for a PrivAsia strategy meeting. We chatted about how the Indian project had gone thus far, and the sort of activities our partners would like to undertake over the next couple of years. Their main priority at the moment is India's proposed UID (Unique Identification) project, which is riddled with flaws, inconsistencies and logical gaps. The project is also extremely expensive, with estimates ranging from just under $4 billion to $33 billion. Our partners strongly oppose the programme in its current form, and are exploring a number of strategies for fighting it - we'll keep you appraised of their progress...

PI then parted ways – Gus headed to Hong Kong and Eric and I flew to Dhaka to meet up with Simon and Ahmed Swapan of Voices for Interactive Choice and Empowerment (VOICE), our partner in Bangladesh. We spent a day at the VOICE offices, getting extremely jealous of their huge kitchen and the fact that they all sit down to a freshly cooked lunch every day. That evening, Ahmed took us to a book fair, which was much livelier than we were expecting! It was held outside and was packed with people socialising, eating deep-fried crayfish and (occasionally) perusing the books and pamphlets on display. The fair is apparently an annual event and VOICE have had their own stand there for the past few years.

The following day was the National Convention on the Right to Privacy and Data Protection, organized by VOICE and a group of other Bangladeshi NGOs. We were delighted by the turnout - over 80 people showed up to listen and to voice their own opinions - but Ahmed was unsurprised, explaining that privacy was a hot topic in Bangladesh at the moment. Several issues were clearly extremely controversial, and the debate became very heated when it turned to the relationship between privacy and the right to information (recently enshrined in law in the RTI Act 2009). It was amazing to see how passionate people were, and how eager to improve things. The debate was presided over by retired Justice Golam Rabbani, who urged the government to create a national tribunal for the protection of the citizen's right to privacy.

Gus spent a brief 36 hours in Hong Kong but was able to participate in a symposium run by our partners at Hong Kong University's Faculty of Law. The participants at the symposium included the Privacy Commissioner of Hong Kong, academics and industry experts from China, Macau and Taiwan, and guest speakers from Switzerland and Canada. The slides of many of the presentations are available online. Apparently the level of sophistication in the academic research that is now starting to influence the legislative environment in Hong Kong and China is astonishing.

Trips like these are exhausting but invaluable - they allow us to see the PrivAsia work in action rather than hearing about it in emails and phone calls, and to discuss progress and problems face-to-face. Eric and Gus are already looking forward to Pakistan in April...

This blog post by Emma Draper was published on the Privacy International blog

Watch the video about contemporary privacy issues in India and Bangladesh below

For more details visit https://cis-india.org/news/privacy-internationals-trip-to-asia

Privacy International Network Meeting

praskrishna — 2015-05-02T05:02:55Z

Sunil Abraham will be attending this meeting organized by Privacy International, UK in London on April 22 and 23, 2015.

A total of 26 delegates have been invited to take part in this meeting. The emphasis of the meeting is to share stories and experiences and discuss more about taking the research forward.

Some of the strategies discussed include stories of policy engagement (how to inform policy and interact with policy-makers); Research and Investigations; UN Privacy Agenda; Privacy International Network; Governance and good practice; Reflections and looking forward.

For more details visit https://cis-india.org/internet-governance/news/privacy-international-network-meeting

Privacy in the Social Networked World

praskrishna — 2012-12-04T16:19:51Z

The Asian Privacy Scholars Network 2nd International Conference was hosted by the Centre for Business Information Ethics, Meiji University, Tokyo, Japan, on behalf of the Asian Privacy Scholars Network, November 19 - 20, 2012. Elonnai Hickok is speaking at the event.

Monday, November 19, 2012

09:00—09:30	Registration and Welcome
09:30—10:30	Keynote Speaker: Pirongrong Ramasoota (Chulalongkorn University, Thailand) The Future of Privacy in the World's Largest Democracy
10:30—11:00	Break
11:00—12:30	Whon-Il Park (Kyung Hee University, Korea) How to Protect, or Utilize, Personal Visual Information in Korea Sinta Dewi Rosadi (University Padjadjaran, Indonesia) Constitutional Privacy Protection: The Indonesian Experience Takato Natsui (Meiji University, Japan) Censorship, Burying and Mental Health in Business Office
12:30—14:00	Lunch
14:00—15:00	Lilian Edwards (Strathclyde University, UK) International Implications of the Proposed Revision of the EU Data Protection Directive Graham Greenleaf (UNSW, Australia and Meiji University, Japan) 100 Data Privacy Laws: Their Significance and Origins
15:00—15:30	Break
15:30—16:30	Kiyoshi Murata/Yohko Orito (Meiji University/Ehime University, Japan) Japanese Youngsters' Social Attitude towards Privacy Ryoko Asai/Iordanis Kavathatzopoulos (Meiji University, Japan/Uppsala University, Sweden) The Paradoxical Nature of Privacy
18:00—20:00	Conference Banquet (Salon San, 23rd Floor, Liberty Tower, Meiji University)

Tuesday, November 20, 2012

09:00—09:45	Keynote Speaker: Roger Clarke (Xamax Consultancy, UNSW and ANU, Australia) Consumer-Oriented Social Media as Market Opportunity
09:45—10:00	Video Presentation from David Lyon (Queens University, Canada)
10:00—10:30	Break
10:30—12:00	Daniel Trottier (Uppsala University, Sweden) Social Networking Sites and Crowd-sourced Surveillance Colin Bennett (University of Victoria, Canada) Social Networking and Privacy Jurisdiction Andrew Adams (Meiji University, Japan) Facebook Code: SNS Platform Affordances and Privacy
12:00—13:00	Lunch
13:00—14:30	Elonnai Hickok (Centre for Internet and Society, India) Transparency and Privacy in India Fumio Shimpo (Keio University, Japan) Current Developments in Japanese Data Protection Policy Panel: Chen, Greenleaf, Hickok, Shimpo
14:30—15:00	Break
15:00—17:00	Ian Brown (University of Oxford, UK) Data Protection and Social Networking Services Shirley Williams (University of Reading, UK) Do Computer Science Scholars Consider Issues of Privacy when Studying Large Twitter Data Sets? Final Panel: Adams, Bennett, Brown, Clarke, Williams

Organisers

Prof Andrew A. Adams, Meiji University, Tokyo, Japan
Prof Kiyoshi Murata, Meiji University, Tokyo, Japan
Prof Graham Greenleaf, UNSW, Sydney, Australia
(JSPS Visiting Fellow, Meiji University Sep-Dec 2012)

Read the original here

For more details visit https://cis-india.org/news/privacy-in-social-networked-world

Privacy in the Digital Age: Addressing Common Challenges, Seizing Opportunities

Admin — 2018-05-24T10:45:56Z

DG Justice and Consumers and European Union is organizing a conference on privacy in the digital age on May 25, 2018 in New Delhi.

Agenda

Friday 25 May 2018, Reception to follow, The Lalit Hotel, Barakhamba Avenue, Connaught Place, New Delhi, India

9:00 a.m. Registration and welcome coffee
9:20 a.m. Welcome: Vera Jourova, EU Commissioner for Justice and Consumers (by video)
9:30 a.m. Opening remarks: Justice B.N. Srikrishna, chair of the Committee of Experts on a Data Protection Framework for India
Tomasz Kozlowski, Ambassador of the European Union to India

10:00 a.m. Panel 1 - Setting the scene: India at the crossroads

Moderator: Sunil Abraham, Executive Director, Centre for Internet and Society, India
Vinayak Godse, Senior Director, Data Protection, Data Security Council of India
Raman Jit Singh Chima, Policy Director, Access Now, India
Amba Kak, Public Policy Advisor, Mozilla, India
11:00 a.m.: Coffee break

11:15 a.m. Panel 2 - Modern data protection laws: towards global convergence

Moderator: Clarisse Girot, Data Privacy Project Lead, Asian Business Law Institute, Singapore
Ralf Sauer, Deputy Head of Unit, International data flows and protection, European Commission, Brussels
Malavika Jayaram, Executive Director, Digital Asia Hub, Hong Kong
Graham Greenleaf, Professor of Law & Information Systems, University of New South Wales, Australia (by video)

12:15 p.m. Panel 3 - Privacy and data security: a business opportunity

Moderator: Ralf Sauer, Deputy Head of Unit, International data flows and protection, European Commission, Brussels
Srinivas Poorsarla, Vice President and Head (Global), Privacy and Data Protection, Infosys, India
Ravi Sogi, Head - Product Security and Privacy, Philips
Riccardo Masucci, Global Director of Privacy Policy, Intel, Washington DC

1:15 p.m.: Reception

For more details visit https://cis-india.org/internet-governance/news/privacy-in-the-digital-age-addressing-common-challenges-seizing-opportunities

Privacy in the Age of Big Data

amber — 2017-04-11T14:43:59Z

Personal data is freely accessible, shared and even sold, and those to whom this information belongs have little control over its flow.

The article was published in the Asian Age on April 10, 2017.

In 2011 it was estimated that the quantity of data produced globally surpassed 1.8 zettabyte. By 2013, it had increased to 4 zettabytes. This is a result of digital services which involve constant data trails left behind by human activity. This expansion in the volume, velocity, and variety of data available, together with the development of innovative forms of statistical analytics on the data collected, is generally referred to as “Big Data”. Despite significant (though largely unrealised) promises about Big Data, which range from improved decision-making, increased efficiency and productivity to greater personalisation of services, concerns remain about the impact of such datafication of all human activity on an individual’s privacy. Privacy has evolved into a sweeping concept, including within its scope matters pertaining to control over one’s body, physical space in one’s home, protection from surveillance, and from search and seizure, protection of one’s reputation as well as one’s thoughts. This generalised and vague conception of privacy not only comes with great judicial discretion, it also thwarts a fair understanding of the subject. Robert Post called privacy a concept so complex and “entangled in competing and contradictory dimensions, so engorged with various and distinct meanings”, that he sometimes “despairs whether it can be usefully addressed at all”.

This also leaves the idea of privacy vulnerable to considerable suspicion and ridicule. However, while there is a lack of clarity over the exact contours of what constitutes privacy, there is general agreement over its fundamental importance to our ability to lead whole lives. In order to understand the impact of datafied societies on privacy, it is important to first delve into the manner in which we exercise our privacy. The ideas of privacy and data management that are prevalent can be traced to the Fair Information Practice Principles (FIPP). These principles are the forerunners of most privacy regimes internationally, such as the OECD Privacy Guidelines, APEC Framework, or the nine National Privacy Principles articulated by the Justice A.P. Shah Committee Report. All of these frameworks have rights to notice, consent and correction, and how the data may be used, as their fundamental principles. It makes the data subject to the decision-making agent about where and when her/his personal data may be used, by whom, and in what way. The individual needs to be notified and his consent obtained before his personal data is used. If the scope of usage extends beyond what he has agreed to, his consent will be required for the increased scope.

In theory, this system sounds fair. Privacy is a value tied to the personal liberty and dignity of an individual. It is only appropriate that the individual should be the one holding the reins and taking the large decisions about the use of his personal data. This makes the individual empowered and allows him to weigh his own interests in exercising his consent. The allure of this paradigm is that in one elegant stroke, it seeks to ensure that consent is informed and free and also to implement an acceptable trade-off between privacy and competing concerns. This approach worked well when the number of data collectors were less and the uses of data was narrower and more defined. Today’s infinitely complex and labyrinthine data ecosystem is beyond the comprehension of most ordinary users. Despite a growing willingness to share information online, most people have no understanding of what happens to their data.

The quantity of data being generated is expanding at an exponential rate. From smartphones and televisions, trains and airplanes, sensor-equipped buildings and even the infrastructures of our cities, data now streams constantly from almost every sector and function of daily life, “creating countless new digital puddles, lakes, tributaries and oceans of information”. The inadequacy of the regulatory approaches and the absence of a comprehensive data protection regulation is exacerbated by the emergence of data-driven business models in the private sector and the adoption of data-driven governance approach by the government. The Aadhaar project, with over a billion registrants, is intended to act as a platform for a number of digital services, all of which produce enormous troves of data. The original press release by the Central Government reporting the approval by the Cabinet of Ministers of the Digital India programme, speaks of “cradle to grave” digital identity as one of its vision areas.

While the very idea of the government wanting to track its citizens’ lives from cradle to grave is creepy enough in itself, let us examine for a minute what this form of datafied surveillance will entail. A host of schemes under Digital India shall collect and store information through the life cycle of an individual. The result, as we can see, is building databases on individuals, which when combined, will provide a 360 degree view into the lives of individuals. Alongside the emergence of India Stack, a set of APIs built on top of the Aadhaar, conceptualised by iSPIRT, a consortium of select IT companies from India, to be deployed and managed by several agencies, including the National Payments Corporation of India, promises to provide a platform over which different private players can build their applications.

The sum of these interconnected parts will lead to a complete loss of anonymity, greater surveillance and impact free speech and individual choice. The move towards a cashless economy — with sharp nudges from the government — could lead to lack of financial agencies in case of technological failures as has been the case in experiments with digital payments in Africa. Lack of regulation in emerging data driven sectors such as Fintech can enable predatory practices where right to remotely deny financial services can be granted to private sector companies. An architecture such as IndiaStack enables datafication of financial transactions in a way that enables linked and structured data that allows continued use of the transaction data collected. It is important to recognise that at the stage of giving consent, there are too many unknowns for us to make informed decisions about the future uses of our personal data. Despite blanket approvals allowing any kind of use granted contractually through terms of use and privacy policies, there should be legal obligations overriding this consent for certain kinds of uses that may require renewed consent.

Biometrics-based identification in UK: In 2005, researchers from London School of Economics and Political Science came out with a detailed report on the UK Identity Cards Bill (‘UK Bill’) — the proposed legislation for a national identification system based on biometrics. The project also envisaged a centralised database (like India) that would store personal information along with the entire transaction history of every individual. The report pointed strongly against the centralising storage of information and suggested other alternatives such as a system based on smartcards (where biometrics are stored on the card itself) or offline biometric-reader terminals.

As per the report, the alternatives would also have been cheaper as neither required real-time online connectivity. In India, online authentication is a far greater challenge. According to Network Readiness Index, 2016, India ranks 91, whereas UK is placed eight. Poor Internet connectivity can raise a lot of problems in the future including paralysis of transactions. The UK identification project was subsequently discarded as a result of the privacy and cost considerations raised in this report.

Aadhaar: Privacy concerns

Once the data is collected through National Information Utilities, it will be privatised and controlled by private utilities.
Once an individual’s data is entered in the system, it cannot be deleted. That individual will have no control over it.
Aadhaar Data (Demographic details along with photographs) are shared/transferred with the private entities including telecom companies as per the Aadhaar (Targeted delivery of Financial and other subsidies, benefits and services) Act, 2016 with the consent of Aadhaar number holder to fulfil their e-KYC requirements. The data is shared in encrypted form through secured channel.
Aadhaar Enabled Payment System (AEPS) on which 119 banks are live.
More than 33.87 crore transactions have taken place through AEPS, which was only 46 lakhs in May 2014.
As on 30-9-2016, 78 government schemes were linked to Aadhaar.
The Aadhaar (Targeted Delivery of Financial and Other Subsidies, Benefits and Services) Act, 2016, provides that no core-biometric information (fingerprints, iris scan) shall be shared with anyone for any reason whatsoever (Sec 29) and that the biometric information shall not be used for any purpose other than generation of Aadhaar and authentication.
Access to the data repository of UIDAI, called the Central Identities Data Repository(CIDR), is provided to third parties or private companies.

Central Monitoring System (CMS) is already live in Delhi, New Delhi and Mumbai. Union minister Ravi Shankar Prasad revealed this in one of his replies in the Lok Sabha last year. CMS has been set up to automate the process of Lawful Interception & Monitoring of telecommunications.

Lawful Intercept and Monitoring (LIM) systems are used by the Indian Government to intercept records of voice, SMSes, GPRS data, details of a subscriber’s application and recharge history and call detail record (CDR) and monitor Internet traffic, emails, web-browsing, Skype and any other Internet activity of Indian users.

For more details visit https://cis-india.org/internet-governance/blog/asian-age-amber-sinha-april-10-2017-privacy-in-the-age-of-big-data

Privacy in India — An Early Draft

Natasha Vaz — 2014-02-28T05:05:21Z

Privacy India in partnership with Privacy International, UK, Society in Action Group, Gurgaon, and the Centre for Internet and Society, Bangalore is pleased to bring you the draft chapters of its book on privacy in India. These include the Country Report, Telecommunication and Internet Privacy, E-Governance Identity and Privacy, Finance and Privacy, Health and Privacy, Transparency and Privacy.

Note: The chapters are an early draft which is in the process of being reviewed and updated. We greatly appreciate your comments and feedback.

Download the chapters below:

Country Report [PDF Document, 925 Kb]
Transparency and Privacy [PDF Document, 383 Kb]
Freedom of Expression and Privacy [PDF Document, 365 Kb]
Health and Privacy [PDF Document, 1146 Kb]
Finance and Privacy [PDF document 204 Kb]
E-Governance, Identity and Privacy [PDF Document, 554 Kb]
Telecommunications and Internet Privacy [PDF Document, 471 Kb]
Consumer Privacy [PDF, 390 Kb]
Law Enforcement, National Security, and Privacy [PDF, 422 Kb]

For more details visit https://cis-india.org/internet-governance/privacy-in-india-draft-chapters

Privacy in Healthcare: Policy Guide

tanvi — 2014-08-31T15:18:12Z

The Health Policy Guide seeks to understand what are the legal regulations governing data flow in the health sector — particularly hospitals, and how are these regulations implemented. Towards this objective, the research reviews data practices in a variety of public and private hospitals and diagnostics labs. The research is based on legislation, case law, publicly available documents, and anonymous interviews.

Click to download the PDF (320 Kb)

Introduction

To this date, there exists no universally acceptable definition of the right to privacy. It is a continuously evolving concept whose nature and extent is largely context driven. There are numerous aspects to the right to privacy, each different from the other in terms of the circumstance in which it is invoked. Bodily privacy however, is to date, the most guarded facet of this vastly expansive right. The privacy over one’s own body including the organs, genetic material and biological functions that make up one’s health is an inherent right that does not; as in the case of other forms of privacy such as communication or transactional privacy, emanate from the State. It is a right that has its foundations in the Natural Law conceptions of The Right to Life, which although regulated by the State can at no point be taken away by it except under extreme circumstances of a superseding Right to Life of a larger number of people.

The deliberation leading to the construction of a universally applicable Right to Privacy has up until now however only been in terms of its interpretation as an extension of the Fundamental Right to Life and Liberty as guaranteed under Article 21 as well as the freedom of expression and movement under Articles 19(1)(a) and (b) of the Constitution of India. While this may be a valid interpretation, it narrows the ambit of the right as one that can only be exercised against the State. The Right to privacy however has much larger implications in spheres that are often removed from the State. There is thus an impending need to create an efficient and durable structure of Law and policy that regulates the protection of privacy in Institutions that may not always be agents of the State.

It is in this regard that the following analysis studies the existing conceptions of privacy in the Healthcare sector. It aims to study the existing mechanisms of privacy protection and their pragmatic application in everyday practices. Further, it determines definitive policy gaps in the existing framework and endeavors to provide effective recommendations to not only redress these shortcomings but also create a system that is efficient in its fulfillment of the larger objective of the actualization of the Right to Privacy at an individual, state and institutional level.

Purpose

The purpose of this research study is to formulate a comprehensive guide that maps the synthesis, structure and implementation of privacy regulations within the healthcare sector in India. It traces the domestic legislation pertaining to various aspects of the healthcare sector and the specific provisions of the law that facilitate the protection of the privacy of individuals who furnish their personal information as well as genetic material to institutions of healthcare, either for the purpose of seeking treatment or to contribute to research studies. It is however imperative that the nature and extent of the information collected be restricted through the establishment of requisite safeguards at an institutional level that percolate down to everyday practices of data collection, handling and storage within healthcare institutions. The study thus aims to collate the existing systems of privacy protection in the form of laws, regulations and guidelines and compare these with actual practices in government and private hospitals and diagnostic laboratories to determine whether these laws are in fact effective in meeting the required standards of privacy protection. Further, the study also broadly looks at International practices of privacy protection and offers recommendations to better the existing mechanisms of delimiting unnecessary intrusions on the privacy of patients.

Importance

The Indian Healthcare sector although at par with international standards in its methods of diagnosis, treatment and the use of contemporary technology, is still nascent in the nature and extent of its interaction with the Law. There are a number of aspects of healthcare that lie on the somewhat blurred line between the interest of the public and the sole right of the individual seeking treatment. One such aspect is the slowly evolving right to privacy. The numerous facets of this right have come to the fore largely through unique case laws that are reflective of a dynamic social structure, one that seeks to reconcile the socio economic rights that once governed society with individual interests that it has slowly come to realize. The right of an individual to disclose the nature of his disease, the liberty of a woman not to be compelled to undergo a blood test, the bodily autonomy to decide to bear children or not, the decisional privacy with regards to the termination of a pregnancy and the custodial rights of two individuals to their child are certain contentious aspects of healthcare that have constructed the porous interface between the right to privacy and the need for medical treatment. It is in this context that this study aims to delve into the existing basic structure of domestic legislation, case laws and regulations and their subsequent application in order to determine important gaps in the formulation of Law and Policy. The study thus aims to draw relevant conclusions to fill these gaps through recommendations sourced from international best practice in order to construct a broad framework upon which one can base future policy considerations and amendments to the existing law.

Methodology

This research study was undertaken in two major parts. The first part assesses domestic legislation and its efficacy in the current context. This is done through the determination of relevant provisions within the Act that are in consonance with the broader privacy principles as highlighted in the A.P Shah Committee report on Privacy Protection[1]. This part of the research paper is based on secondary sources, both in terms of books as well as online resources. The second part of the paper analyses the actual practices with regard to the assimilation, organization, use and storage of personal data as practiced in Government and Private hospitals and Diagnostic laboratories. Three Private hospitals, a prominent Government hospital and a Diagnostic laboratory were taken into consideration for this study. The information was provided by the concerned personnel at the medical records department of these institutions of healthcare through a survey conducted on the condition of anonymity. The information provided was analyzed and collated in accordance with the compliance of the practices of these institutions with the Principles of privacy envisioned in the Report of the Group of Experts on Privacy.

The Embodiment of Privacy Regulation within Domestic Legislation

This section of the study analyses the viability of an approach that takes into account the efficacy of domestic legislation in regulating practices pertaining to the privacy of individuals in the healthcare sector. This approach perceives the letter and spirit of the law as the foundational structure upon which internal practices, self regulation and the effective implementation of policy considerations that aim to create an atmosphere of effective privacy regulation take shape, within institutions that offer healthcare services. To this effect, domestic legislationthat provides for the protection of a patient’s privacy has been examined. The law has been further studied with respect to its tendency to percolate into the everyday practices, regulations and guidelines that private and government hospitals adhere to. The extent of its permeation into actual practice; in light of its efficacy in fulfilling the perambulatory objectives of ensuring safe and unobtrusive practices,within the construct of which a patient is allowed to recover and seek treatment, has also been examined.

The term ‘Privacy’ is used in a multitude of domestic legislations primarily in the context of the foundation of the fiduciary relationship between a doctor and a patient.This fiduciary relationship emanates from a reasonable expectation of mutual trust between the doctor and his patients and is established through the Indian Medical Council Act of 1952, specifically section 20(A) of the Act which lays down the code of ethics which a doctor must adhere to at all times. Privacy within the healthcare sector includes a number of aspects including but not limited to informational privacy (e.g., confidentiality, anonymity, secrecy and data security); physical privacy (e.g., modesty and bodily integrity); associational privacy (e.g. intimate sharing of death, illness and recovery); proprietary privacy (e.g., self-ownership and control over personal identifiers, genetic data, and body tissues); and decisional privacy (e.g., autonomy and choice in medical decision-making).

Privacy Violations stem from policy and information gaps: Violations in the healthcare sector that stem from policy formulation as well and implementation gaps[2] include the disclosure of personal health information to third parties without consent, inadequate notification to a patient of a data breach, unlimited or unnecessary collection of personal health data, collection of personal health data that is not accurate or relevant, the purpose of collecting data is not specified, refusal to provide medical records upon request by client, provision of personal health data to public health, research, and commercial uses without de-identification of data and improper security standards, storage and disposal. The disclosure of personal health information has the potential to be embarrassing, stigmatizing or discriminatory.[3] Furthermore, various goods such as employment, life, and medical insurance, could be placed at risk [4]if the flow of medical information were not restricted. ^{^[5]}

Disclosure of personal health information is permitted and does not amount to a violation of privacy in the following situations: 1) during referral, 2) when demanded by the court or by the police on a written requisition, 3) when demanded by insurance companies as provided by the Insurance Act when the patient has relinquished his rights on taking the insurance, and 4) when required for specific provisions of workmen's compensation cases, consumer protection cases, or for income tax authorities,^{^[6]} 5) disease registration, 6) communicable disease investigations, 7) vaccination studies, or 8) drug adverse event reporting. ^{^[7]}

The following domestic legislations have been studied and relevant provisions of the Act have been accentuated in order to analyse their compliance with the basic principles of privacy as laid out in the A.P Shah Committee report on Privacy.

Mental Health Act, 1987[8]
The Provisions under the Act pertaining to the protection of privacy of the patient have been examined. The principles embodied within the Act include aspects of the Law that determine the nature and extent of oversight exercised by the relevant authorities over the collection of information, the limitation on the collection of data and the restrictions on the disclosure of the data collected. The principle of oversight is embodied under the legislation within the provisions that allow for the inspection of records in psychiatric hospitals and nursing homes only by officers authorized by the State Government.^{^[9]} The limitation on the Collection of information is imposed by the Inspection of living conditionsby a psychiatrist and two social workers are on a monthly basis. This would include analyzing the living condition of every patient and the administrative processes of the psychiatric hospital and/or psychiatric nursing home. ^{^[10]}Additionally, Visitors must maintain a book regarding their observations and remarks.^{^[11]} Medical certificates may be issued by a doctor, containing information regarding the nature and degree of the mental disorder as reasons for the detention of a person in a psychiatric hospital or psychiatric nursing home. ^{^[12]}Lastly, the disclosure of personal records of any facility under this Act by inspecting officers is prohibited^{^[13]}

Pre-Conception and Pre-Natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994 ^{^[14]}
The Act was instituted in light of a prevalent public interest consideration of preventing female foeticide. However, it is imperative that the provision of the Act remain just shy of unnecessarily intrusive techniques and do not violate the basic human requirement of privacy in an inherently personal sphere. The procedure that a mother has to follow in order to avail of pre-natal diagnostic testing is mandatory consent of age, abortion history and family history. These conditions require a woman to reveal sensitive information concerning family history of mental retardation or physical deformities.[15] Aspecial concern for privacy and confidentiality should be exercised with regards to disclosure of genetic information. [16]

Medical Termination of Pregnancy Act, 1971 ^{^[17]}
Although, the right to an abortion is afforded to a woman within the construct of her inherent right to bodily privacy, decisional privacy (for e.g., autonomy and choice in medical decision-making) is not afforded to patients and their families with regards to determining the sex of the baby. The sections of the Act that have been examined lay down the provisions available within the Act to facilitate the protection of a woman’s right to privacy during the possible termination of a pregnancy. These include the principles pertaining to the choice and consent of the patient to undergo the procedure, a limit on the amount of information that can be collected from the patient, the prevention of disclosure of sensitive information and the security measures in place to prevent the unauthorized access to this information. The Medical Termination of Pregnancy Regulations, 2003 supplement the Act and provide relevant restrictions within every day practices of data collection use and storage in order to protect the privacy of patients. The Act mandates Written Consent of the patient in order to facilitate an abortion .Consent implies that the patient is aware of all her options, has been counselled about the procedure, the risks and post-abortion care.[18]. The Act prohibits the disclosure of matters relating to treatment for termination of pregnancy to anyone other than the Chief Medical Officer of the State. [19]The Register of women who have terminated their pregnancy, as maintained by the hospital, must be destroyed on the expiry of a period of five years from the date of the last entry.[20] The Act also emphasizes upon the security of information collected. The medical practitioner assigns a serial number for the woman terminating her pregnancy.[21]Additionally, the admission register is stored in safe custody of the head of the hospital. [22]

Indian Medical Council (Professional conduct, Etiquette and Ethics) Regulations, 2002 (Code of Ethics Regulations, 2002)
The Medical Council of India (MCI) Code of Ethics Regulations^{^[23]} sets the professional standards for medical practice. These provisions regulate the nature and extent of doctor patient confidentiality. It also establishes universally recognized norms pertaining to consent to a particular medical procedure and sets the institutionally acceptable limit for intrusive procedure or gathering excessively personal information when it is not mandatorily required for the said procedure. The provisions addressed under these regulations pertain to the Security of the information collected by medical practitioners and the nature of doctor patient confidentiality.

Physicians are obliged to protect the confidentiality of patients⁵during all stages of the procedure and with regard to all aspects of the information provided by the patient to the doctor, includinginformation relating to their personal and domestic lives. ^{^[24]}The only exception to this mandate of confidentiality is if the law requires the revelation of certain information, or if there is a serious and identifiable risk to a specific person and / or community ofa notifiable disease.

Ethical Guidelines for Biomedical Research on Human Subjects [25]
The provisions for the regulation of privacy pertaining to biomedical research include aspects of consent as well as a limitation on the information that may be collected and its subsequent use. The provisions of this act aim to regulate the protection of privacy during clinical trials and during other methods of research. The principal of informed consent is an integral part of this set of guidelines. ThePrivacy related information included in the participant/ patient information sheet includes: the choice to prevent the use of their biological sample, the extent to which confidentiality of records could be maintained and the consequences of breach of confidentiality, possible current and future uses of the biological material and of the data to be generated from the research and if the material is likely to be used for secondary purposes or would be shared with others, the risk of discovery of biologically sensitive information and publications, including photographs and pedigree charts.[26] The Guidelines require special concern for privacy and confidentiality when conducting genetic family studies. [27]The protection of privacy and maintenance of confidentiality, specifically surrounding the identity and records, is maintained whenusing the information or genetic material provided by participants for research purposes. ^{^[28]}The Guidelines require investigators to maintain confidentiality of epidemiological data due to the particular concern that some population based data may also have implications on issues like national security or public safety.[29]All documentation and communication of the Institutional Ethics Committee (IEC) must be dated, filed and preserved according to the written procedures.Data of individual participants can be disclosed in a court of law under the orders of the presiding judge, if there is a threat to a person’s life, communication to the drug registration authority regarding cases of severe adverse reaction and communication to the health authority if there is risk to public health.[30]

Insurance Regulatory and Development Authority (Third Party Administrators) Health Services Regulations, 2001
The provisions of the Act that have been addressed within the scope of the study regulate the practices of third party administrators within the healthcare sector so as to ensure their compliance with the basic principles of privacy.An exception to the maintenance and confidentiality of information confidentiality clause in the code of conduct, requires TPAs to provide relevant information to any Court of Law/Tribunal, the Government, or the Authority in the case of any investigation carried out or proposed to be carried out by the Authority against the insurance company, TPA or any other person or for any other reason.[31]In July 2010, the IRDA notified theInsurance Regulatory and Development Authority (Sharing of Database for Distribution of Insurance Products) Regulations [32]. These regulations restrict referral companies from providing details of their customers without their prior consent.[33]TPAs must maintain the confidentiality of the data collected by it in the course of its agreement and maintain proper records of all transactions carried out by it on behalf of an insurance company and are also required to refrain from trading information and the records of its business[34].TPA’s must keep records for a period of not less than three years.[35]

IDRA Guidelines on Outsourcing of Activities by Insurance Companies [36]
These guidelines require the insurer to take appropriate steps that require third party service providers protect confidential information of both the Insurer and its clients from intentional or inadvertent disclosure to unauthorized persons.[37]

Exceptions to the Protection of Privacy
The legal provisions with regard to privacy, confidentiality and secrecy are often superseded by Public Interest Considerations. The right to privacy, although recognized in the course of Indian jurisprudence and embodied within domestic legislation is often overruled prima facie when faced with situations or instances that involve a larger interest of a greater number of people. This policy is in keeping with India’s policy goals as a social welfare state to aid in the effectuation of its utilitarian ideals. This does not allow individual interest to at any point surpass the interest of the masses.

Epidemic Diseases Act, 1897 [38]
Implicit within this formulation of this Act is the assumption that in the case of infectious diseases, the right to privacy, of infected individuals must give way to the overriding interest of protecting public health.[39] This can be ascertained not only from the black letter of the Law but also from its spirit. Thus, in the absolute positivist as well as a more liberal interpretation, at the crux of the legislation lies the undeniable fundamental covenant of the preservation of public health, even at the cost of the privacy of a select few individuals [40].

Policy and Regulations

National Policy for Persons with Disabilities, 2006[41]
The following provisions of the Act provide for the incorporation of privacy considerations in prevalent practices with regard to persons with disabilities. The National Sample Survey Organization collects the following information on persons with disabilities: the socio- economic and cultural context, cause of disabilities, early childhood education methodologies and all matters connected with disabilities, at least once in five years.[42]This data is collected by non-medical investigators. [43]There is thus an inherent limit on the information collected. Additionally, this information is used only for the purpose for which it has been collected.

The Special Employment Exchange, as established under The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 Act, collects and furnishes information in registers, regarding provisions for employment. Access to such data is limited to any person who is authorized by the Special Employment Exchange as well as persons authorized by general or special order by the Government, to access, inspect, question and copy any relevant record, document or information in the possession of any establishment. [44] When conducting research on persons with disabilities consent is required from the individual or their family members or caregivers.[45]

HIV Interventions
In 1992, the Government of India instituted the National AIDS Control Organization (NACO) for the prevention and control of AIDS. NACO aims to control the spread of HIV in India through the implementation of Targeted Interventions (TIs) for most at risk populations (MARPs) primarily, sex workers, men having sex with men and people who inject drugs.[46]The Targeted Interventions (TIs) system of testing under this organization has however raised numerous concerns about relevant policy gaps in the maintenance of the confidentiality and privacy of persons living with HIV/ AIDS. The shortcomings in the existing policy framework include: The Lack of a limitation and subsequent confidentiality in the amount of Information collected. Project staff inTIsrecordthe name, address and other contact information of MARPs and share this data with Technical Support Unit and State AIDS Control Societies.[47] Proof of address and identity documents are required to get enrolled in government ART programs.[48]Peer-educators operate under a system known as line-listing, used to make referrals and conduct follow-ups. Peer-educators have to follow-up with those who have not gone at regular intervals for testing. [49] This practice can result in peer-educators noticing and concluding that the names missing are those who have tested positive. [50] Although voluntary in nature, the policy encourage the fulfillment of fulfilling of numerical targets, and in doing so supports unethical ways of testing.[51]

The right to privacy is an essential requirement for persons living with HIV/AIDS due to the potential stigmatizing and discriminatory impact of the revelation of this sensitive information, in any form.[52] The lack of privacy rights often fuels the spread of the disease and exacerbates its impact on high risk communities of individuals. Fears emanating from a privacy breach or a disclosure of data often deter people from getting tested and seeking medical care. The impact of such disclosure of sensitive information including the revelation of tests results to individuals other than the person being tested include low self esteem, fear of loss of support from family/peers, loss of earnings especially for female and transgender sex workers, fear of incrimination for illicit sex/drug use and the insensitivity of counselors. [53]HIV positive individualslive in constant fear of their positive status being leaked. They also shy away from treatment as they fear people might see them taking their medicines and thereby guess their status. Thus breaches in confidentiality and policy gaps in privacy regulation, especially with respect to diseases such as HIV also prevents people from seeking out treatment. [54]

Case Law

The following cases have been used to deliberate upon important points of contention within the ambit of the implementation and impact of Privacy Regulationsin the healthcare sector. This includes the nature and extent of privacy enjoyed by the patient and instances where in the privacy of the patient can be compromised in light of public interest considerations.

Mr. Surupsingh Hrya Naik vs. State of Maharashtra ,[55] (2007)

The decision in this case held that The RTI Act 2005 would supersede The Medical Council Code of Ethics. The health records of an individual in judicial custody should be made available under the Act and can only be denied in exceptional cases, for valid reasons.

Since the Code of Ethics Regulations are only delegated legislation, it was held in the case of Mr. SurupsinghHrya Naik v.State Of Maharashtra[56] that these would not prevail over the Right to Information Act, 2005 (RTI Act) unless the information sought falls under the exceptions contained in Section 8 of the RTI Act. This case dealt with the important point of contention of whether making the health records public under the RTI Act would constitute a violation of the right to privacy. These health records were required to determine why the convict in question was allowed to stay in a hospital as opposed to prison. In this context the Bombay High Court held thatThe Right to Information Act supersedes the regulation that mandate the confidentiality od a person, or in this case a convict’s medical records. It was held that the medical records of a a person sentenced or convicted or remanded to police or judicial custody, if during that period such person is admitted in hospital and nursing home, should be made available to the person asking the information provided such hospital nursing home is maintained by the State or Public Authority or any other Public Body. It is only in rare and in exceptional cases and for good and valid reasons recorded in writing can the information may be denied.

Radiological & Imaging Association v. Union of India ,^{^[57]} (2011)
On 14 January 2011 a circular was issued by the Collector and District Magistrate, Kolhapur requiring the Radiologists and Sonologists to submit an on-line form “F” under the PNDT Rules. This was challenged by the Radiological and Imaging Association, inter alia, on the ground that it violates the privacy of their patients. Deciding the above issue the Bombay High Court held that .The images stored in the silent observer are not transmitted on-line to any server and thus remain embedded in the ultra-sound machine. Further, the silent observer is to be opened only on request of the Collector/ the civil surgeonin the presence of the concerned radiologist/sonologist/doctor incharge of the Ultra-sound Clinic. In light of these considerations and the fact that the `F' form submitted on-line is submitted only to the Collector and District Magistrate is no violation of the doctor's duty of confidentiality or the patient's right to privacy. It was further observed that The contours of the right to privacy must be circumscribed by the compelling public interest flowing through each and every provision of the PC&PNDT Act, when read in the background of the following figures of declining sex ratio in the last five decades.

The use of a Silent Observer system on a sonograph has requisite safeguards and doesn’t violate privacy rights. The declining sex ratio of the country was considered a compelling public Interest that could supersede the right to privacy.

Smt. Selvi and Ors. v.State of Karnataka (2010)
The Supreme Court held that involuntary subjection of a person to narco analysis, polygraph test and brain-mapping violates the ‘right against self-incrimination' which finds its place in Article 20(3)[58] of the Constitution. [59] The court also found that narco analysis violated individuals’ right to privacy by intruding into a “subject’s mental privacy,” denying an opportunity to choose whether to speak or remain silent, and physically restraining a subject to the location of the tests and amounted to cruel, inhuman or degrading treatment.[60]

The Supreme Court found that Narco-analysis violated an individuals’ right to privacy by intruding into a “subject’s mental privacy,” denying an opportunity to choose whether to speak or remain silent.

Neera Mathur v. Life Insurance Corporation (LIC),[61] (1991)
In this casethe plaintiff contested a wrongful termination after she availed of maternity leave. LIC required women applicants to furnish personal details like their menstrual cycles, conceptions, pregnancies, etc. at the time of appointment. Such a requirement was held to go against the modesty and self respect of women. The Court held that termination was only because of disclosures in application, which was held to be intrusive, embarrassing and humiliating. LIC was directed to delete such questions.

The Court did not refer to the term privacy however it used the term personal details as well as modesty and self respect, but did not specifically link them to the right to life or any other fundamental right. These terms (modesty and self respect) are usually not connected to privacy but although they may be the harm which comes from an intrusion of one’s privacy.

The Supreme Court held that Questions related to an individual’s reproductive issues are personal details and should not be asked in the service application forms.

Ms. X vs. Mr. Z &Anr ,[62] (2001)
In this case, the Delhi High Court held that an aborted foetus was not a part of the body of a woman and allowed the DNA test of the aborted foetus at the instance of the husband. The application for a DNA test of the foetus was contested by the wife on the ground of “Right to Privacy”.7In this regard the court held that The Supreme Court had previously decided that a party may be directed to provide blood as a DNA sample but cannot be compelled to do so. The Court may only draw an adverse interference against such party who refuses to follow the direction of the Court in this respect.The position of the court in this case was that the claim that the preservation of a foetus in the laboratory of the All India Institute of Medical Science, violates the petitioner’s right to privacy, cannot be entertained as the foetus had been voluntarily discharges from her body previously, with her consent. The foetus, that she herself has dischargedis claimed to be subjected to DNA test. Thus, in light of the particular facts and the context of the case, it was held that petitioner does not have any right of privacy.

A woman’s right to privacy does not extend to a foetus, which is no longer a part of her body. The right to privacy may arise from a contract as well as a specific relationship, including a marital relationship. The principle in this case has been laid down in broad enough terms that it may be applied to other body parts which have been disassociated from the body of the individual.

It is important to note here that the fact that the Court is relying upon the principles laid down in the case of R. Rajagopal seems to suggest that the Court is treating organic tissue preserved in a public hospital in the same manner as it would treat a public document, insofar as the exception to the right to privacy is concerned.

B.K Parthasarthi vs. Government of Andhra Pradesh ,[63] (1999)
In this case, the Andhra Pradesh High Court was to decide the validity of a provision in the Andhra Pradesh Panchayat Raj Act, 1994 which stipulated that any person having more than two children should be disqualified from contesting elections. This clause was challenged on a number of grounds including the ground that it violated the right to privacy. The Court, in deciding upon the right to privacy and the right to reproductive autonomy, held thatThe impugned provision, i.eSection 19(3) of the said Act does not compel directly anyone to stop procreation, but only disqualifies any person who is otherwise eligible to seek election to various public offices coming within the ambit of the Andhra Pradesh Panchayat Raj Act, 1994 or declares such persons who have already been holding such offices to be disqualified from continuing in such offices if they procreate more than two children.Therefore, the submission made on behalf of the petitioners 'right to privacy' is infringed, is untenable and must be rejected.”

Mr. X v. Hospital Z, Supreme Court of India ,[64] (1998 and 2002)
The petitioner was engaged to be married and thereafter during tests for some other illness in the hospital it was found that the petitioner was HIV positive. This information was released by the doctor to the petitioner’s family and through them to the family of the girl to whom the petitioner was engaged, all without the consent of the petitioner. The Court held that:

“The Right to privacy is not treated as absolute and is subject to such action as may be lawfully taken for the prevention of crime or disorder or protection of health or morals or protection of rights and freedoms of others.”

Right to privacy and is subject to such action as may be lawfully taken for the prevention of crime or disorder or protection of health or morals or protection of rights and freedoms of others.

This decision of this case could be interpreted to extend the principle, of disclosure to the person at risk, to other communicable and life threatening diseases as well. However, a positivist interpretation would render these principle applicable to only to HIV+ cases.

M. Vijaya v. Chairman and Managing Director, Singareni Collieries Co. Ltd. [65] (2001)
The petitioner alleged that she had contracted the HIV virus due to the negligence of the authorities of Maternity and Family Welfare Hospital, Godavarikhani, a hospital under the control of Singareni Collieries Company Ltd., (SCCL), in conducting relevant precautionary blood tests before transfusion of blood of her brother (donor) into her body when she was operated for hysterectomy (Chronic Cervicitis) at the hospital. The petition was initially filed as a Public Interest Litigation,which the court duly expanded in order to address the problem of the lack of adequate precautionary measures in hospitals, thereby also dealing with issues of medical confidentiality and privacy of HIV patients. The court thus deliberated upon the conflict between the right to privacy of an HIV infected person and the duty of the state to prevent further transmission and held:

In the interests of the general public, it is necessary for the State to identify HIV positive cases and any action taken in that regard cannot be termed as unconstitutional. As under Article 47 of the Constitution, the State was under an obligation to take all steps for the improvement of the public health. A law designed to achieve this object, if fair and reasonable, in our opinion, will not be in breach of Article 21 of the Constitution of India

The right of reproductive autonomy is a component of the right to privacy .A provision disqualifying a person from standing for elections due to the number of children had, does not violate the right to privacy as the object of the legislation is not to violate the autonomy of an individual but to mitigate the population growth in the country. Measures to control population growth shall be considered legal unless they impermissibly violate a fundamental right.

However, another aspect of the matter is whether compelling a person to take HIV test amounts to denying the right to privacy? The Court analyzed the existing domestic legislation to arrive at the conclusion that there is no general law that can compel a person to undergo an HIV-AIDS test. However, specific provisions under the Prison Laws[66]

provide that as soon as a prisoner is admitted to prison, he is required to be examined medically and the record of prisoner's health is to be maintained in a register. Further, Under the ITP Act, the sex workers can also be compelled to undergo HIV/ AIDS test.[67]

Additionally, under Sections 269 and 270 of the Indian Penal Code, 1860, a person can be punished for negligent act of spreading infectious diseases.

The right to privacy of a person suspected to be HIV+ would be subordinate to the power and duty of the state to identify HIV+ patients in order to protect public interest and improve public health. However any law designed to achieve this object must be fair and reasonable. In a conflict between the individual’s privacy right and the public’s right in dealing with the cases of HIV-AIDS, the Roman Law principle 'SalusPopuliestSuprema' (regard for the public wealth is the highest law) applies when there is a necessity.

After mapping legislation that permit the invasion of bodily privacy, the Court concluded that they are not comprehensive enough to enable the State to collect information regarding patients of HIV/AIDS and devise appropriate strategies and therefore the State should draft a new legislation in this regard. Further the Court gave certain directions to the state regarding how to handle the epidemic of HIV/AIDS and one of those directions was that the “Identity of patients who come for treatment of HIV+/AIDS should not be disclosed so that other patients will also come forward for taking treatment.”

Sharda v. Dharmpal ,[68] (2003)

The basic question in this case was whether a party to a divorce proceeding can be compelled to a medical examination. The wife in the divorce proceeding refused to submit herself to medical examination to determine whether she was of unsound mind on the ground that such an act would violate her right to personal liberty. Discussing the balance between protecting the right to privacy and other principles that may be involved in matrimonial cases such as the ‘best interest of the child’ in case child custody is also in issue, the Court held:

If the best interest of a child is in issue in the case then the patient’s right to privacy and confidentiality would get limited. The right to privacy of an individual would be subordinate to the power of a court to arrive at a conclusion in a matrimonial dispute and the right of a party to protect his/her rights in a Court of law would trump the right to privacy of the other.

"Privacy" is defined as "the state of being free from intrusion or disturbance in one's private life or affairs". However, the right to privacy in India, is only conferred through an extensive interpretation of Article 21 and cannot therefore in any circumstance be considered an absolute right. Mental health treatment involves disclosure of one's most private feelings However, like any other privilege the psychotherapist-patient privilege is not absolute and may only be recognized if the benefit to society outweighs the costs of keeping the information private. Thus if a child's best interest is jeopardized by maintaining confidentiality the privilege may be limited.” Thus, the power of a court to direct medical examination of a party to a matrimonial litigation in a case of this nature cannot beheld to violate the petitioner’s right to privacy.

Regulation of Privacy in Government and Private Hospitals and Diagnostic Laborataries

A. Field Study
The Hospitals that have been chosen for the analysis of the efficacy of these legislations include prominent Government Hospitals, Private Hospitals and Diagnostic Centers. These Institutes were chosen because of their widely accredited status as centers of medical research and cutting edge treatment. They have also had a long standing reputation due to their staff of experienced and skilled on call doctors and surgeons. The Private Hospitals chosen had patient welfare centers that addressed the concerns of patients including questions and doubts relating to but not limited to confidentiality and consent. The Government hospitals had a public relations office that addressed the concerns of discharged patients. They also provided counseling services to patients to aid them in addressing concerns relate to the treatment that they might want to be kept confidential. Diagnostic laboratories also have an HR department that addresses similar concerns. The laboratory also has a patient welfare manager who addresses the concerns and queries of the patient prior to and during the procedure.

The following section describes the practices promulgated by Government and Private Hospitals, as well as Diagnostic Laboratories in their endeavor to comply with the basic principles of privacy as laid down in the A.P Shah Committee report on Privacy.

(i) Notice

Through an analysis of the information provided by Government and Private hospitals and diagnostic laboratories, relevant conclusions were drawn with regard to the nature, process and method in which the patient information is recorded. Through interviews of various medical personnel including administrative staff in the patient welfare and medical records departments we observed an environment of openness and accountability within the structure of the patient registration system.

In Government Hospitals, the patient is notified of all types of information that is collected, in terms of both personal information as well as medical history. The Patient admission as well as the patient consent form is filled out by the patient or the attending relative accompanying the patient and assistance for the same is provided by the attending staff members, who explain the required details that need to be filled in a language that the patient is able to understand. The patient is notified of the purpose for which such information is collected and the procedure that he/ she might have to undergo depending on his injury or illness. The patient is not however, notified of the method in which he/she may correct or withdraw the information that is provided. There is no protocol provided for the correction or withdrawal of information, once provided. The patient is, at all times notified of the extent and nature of doctor patient confidentiality including the fact that his/her personal information would not be shared even with his/her immediate relatives , insurance companies, consulting doctors who are not directly involved with his/her treatment or any unauthorized third party without requisite consent from the patient. The patient is informed of the fact that in some cases the medical records of the patient will have to be shared with consulting doctors and that all the patient’s medical records would be provided to insurance companies, but this will only be done with the consent of the patient.

The same system of transparency and accountability transcends across private hospitals and diagnostic laboratories as well. In private hospitals, the patient is informed of all the information that is collected and the purpose for which such information may be collected. Diagnostic laboratories have specific patient consent forms for specific types of procedures which the patient will have to fill out depending on the required tests. These forms contain provisions with regard to the confidential nature of all the information provided. This information can only be accessed by the patient and the consulting doctor with the consent of the patient. Both private hospitals and diagnostic laboratories have a specific protocol and procedure in place to correct or withdraw information that has been provided. In order to do so the patient would have to contact the medical records department with requisite proof of the correct information. Private hospitals inform patients of the nature and extent of doctor patient confidentiality at every stage of the registration process. Some private hospitals contain patient safety brochures which inform patients about the nature and extent of consent and confidentiality, even with regard to consulting doctors and insurance agencies. If the patient does not want certain information revealed to insurance agencies the hospital will retain such records and refraining from providing them to third party insurance agencies. Thus, all information provided by the patient remains confidential at the behest of the patient.

(ii) Choice and Consent

Choice and consent are two integral aspects of the regulation of privacy within the healthcare sector. Government and Private hospitals as well as diagnostic laboratories have specific protocols in place to ensure that the consent of the patient is taken at every stage of the procedure. The consent of the patient can also be withdrawn just prior to the procedure even if this consent has already been given by the patient in writing, previously. The choice of the patient is also given ample importance at all stages of the procedure. The patient can refuse to provide any information that may not mandatorily required for the treatment provided basic information regarding his identity and contact information in case of emergency correspondence has been given.

(iii) Collection Limitation

The information collected from the patient in both government and private hospitals is used solely for the purpose that the patient has been informed of. In case this information is used for purposes other than for the purpose that the patient has been informed of, the patient is informed of this new purpose as well. Patient records in both Government and Private hospitals are stored in the Medical Records Department as hard copies and in some cases as scanned soft copies of the hard copy as well. These Medical Records are all stored within the facility. The duration for which the records are stored range from a minimum of two years to a maximum of ten years in most private hospitals. Some private hospitals store these records for life. Government hospitals store these records for a term of thirty years only as hard copies after which the records are discarded. Private hospitals make medical records accessible to any medical personnel who may ask for it provided the requisite proof of identity and reasons for accessing the same are provided, along with an attested letter of authorization of the doctor who is currently involved or had been involved in the treatment of the patient. Government hospitals however do not let any medical personnel access these records except for the doctor involved in the treatment of that particular patient. Both private and government hospitals are required to share the medical records of the patient with the insurance companies. Government Hospitals only share patient records with nationalized insurance agencies such as The Life Insurance Corporation of India (LIC) but not with private insurance agencies. The insurance claims forms that are required prior to providing medical records to the insurance companies mandatorily require the signature of the patient. The patient is thus informed that his records will be shared with the insurance agencies and his signature is a proof of his implied consent to the sharing of these records with the company with which he has filed a health insurance claim.

Diagnostic laboratories collect patient information solely for the purpose of the particular test that they have been asked to conduct by the treating or consulting doctor. Genetic samples (Blood, Semen, Urine etc) are collected at one time and the various tests required are conducted on these samples. In case of any additional testing that is required to be conducted on these samples, the patient is informed. Additional testing is conducted only in critical cases and in cases where the referral doctor requests for the same to be conducted on the collected samples. In critical cases, where immediate testing is required and the patient is unreachable, the testing is conducted without informing the patient. The patient is mandatorily informed after the test that such additional testing was conducted. The patient sample is stored for one week within the same facility. The Patient records are digitized. They can only be accessed by the patient, who is provided with a particular username and password using which he can access only his records. The information is stored for a minimum of two years. This information can be made available to a medical personnel only if such medical personnel has the required lab no, the patients name, and reason for which it needs to be accessed. He thus requires the permission of the authorities at the facility as well as the permission and consent of the patient to access such records. The Medical test records of a patient are kept completely confidential. Even insurance companies cannot access such records unless they are provided to the company by the patient himself. In critical cases however, the patient information and tests results are shared with the treating or referral doctor without the consent of the patient.

(iv) Purpose Limitation

In Government and Private Hospitals, the information is only used for the purpose for which it is collected. There is thus a direct and relevant connection between the information collected and the purpose for which it used. Additional information is collected to gauge the medical history of the patient that may be relevant to the disease that has to be treated. The information is never deleted after it has been used for the purpose for which it had been collected. The Medical Records of the patient are kept for extended periods in hard copy as well as soft copy versions. There is a provision for informing the patient in case the information is used for any purpose other than the purpose for which it was collected. Consent of the patient is taken at all stages of collecting and utilizing the information provided by him.

Diagnostic Laboratories have a database of all the information collected which is saved in the server. The information is mandatorily deleted after it has been used for the purpose for which it was collected after a period of two years. In case the information is used for any purpose other than the purpose for which it was collected, for example, in critical cases where additional tests have to be conducted the patient is\ always informed of the same.

(v) Access and Correction

In private hospitals, the patient is allowed to access his own records during his stay at the hospital. He is given a copy of his file upon his discharge from the hospital in the form of a discharge summary. However, if he needs to access the original records at a later stage, he can do so by filing a request for the same at the Medical Records Department of the hospital. A patient can make amendments or corrections to his records by providing requisite proof to substantiate the amended information. The patient however at no stage can confirm if the hospital is holding or processing personal information about him or her with the exception of the provisions provided for the amendment or correction to the information held.

The Medical records of a patient in a government hospital are completely sealed. A patient has no access to his own records. Only the concerned doctor who was treating the patient during his stay at the hospital can access the records of the patient. This doctor has to be necessarily associated with the hospital and had to have been directly involved in the patient’s treatment in order to access the records. The patient is allowed to amend information in his medical records but only generic information such as the spelling of his name, his address, telephone number etc. The patient is at no point allowed to access his own records and therefore cannot confirm if the hospital is holding or processing any information about him/her. The patient is only provided with a discharge summary that includes his personal information, the details of his disease and the treatment provided in simple language.

Diagnostic laboratories have an online database of patient records. The patient is given a username and a password and can access the information at any point. The patient may also amend or correct any information provided by contacting the Medical records department for the same. The patient can at any time view the status of his record and confirm if it is being held or processed by the hospital. A copy of such information can be obtained by the patient at any time.

(vi) Disclosure of Information

Private Hospitals are extremely cautious with regard to the disclosure of patient information. Medical records of patients cannot be accessed by anyone except the doctor treating that particular patient or consulting on the case. The patient is informed whenever his records are disclosed even to doctors. Usually, even immediate relatives of the patient cannot access the patient’s records without the consent of the patient except in cases where the condition of the patient is critical. The patient is always informed about the type and extent of information that may be disclosed whenever it is disclosed. No information of the patient is made available publicly at any stage. The patient can refuse to consent to sharing of information collected from him/her with non-authorized agencies. However, in no circumstance is the information collected from him/her shared with non authorized agencies. Some private hospitals also provide the patient with patient’s safety brochures highlighting the extent of doctor patient confidentiality, the patient’s rights including the right to withdraw consent at any stage and refuse access of records by unauthorized agencies.

In government hospitals, the medical records of the patient can only be disclosed to authorized agencies with the prior approval of patient. The patient is made aware of the type and extent of information that is collected from him/her and is mandatorily shared with authorized bodies such as insurance agencies or the treating doctor. No information of the patient is made publicly available. In cases where the information is shared with insurance agencies or any such authorized body the patient gives an undertaking via a letter of his consent to such disclosure. The insurance companies only use medical records for verification purposes and have to do so at the facility. They cannot take any original documents or make copies of the records without the consent of the patient as provided in the undertaking.

Diagnostic Laboratories provide information regarding the patient’s medical records only to the concerned or referred doctor. The patient is always informed of any instance where his information may be disclosed and the consent of the patient is always taken for the same. No information is made available publicly or shared with unauthorized agencies at any stage. Information regarding the patient’s medical records is not even shared with insurance companies.

Government and Private Hospitals provide medical records of patients to the police only when a summons for the same has been issued by a judge. Diagnostic laboratories however do not provide information regarding a patient’s records at any stage to any law enforcement agencies unless there is summons from a judge specifying exactly the nature and extent of information required.

Patients are not made aware of laws which may govern the disclosure of information in private and government hospitals as well as in diagnostic laboratories. The patient is merely informed that the information provided by him to the medical personnel will remain confidential.

(vii) Security

The security measures that are put in place to ensure the safety of the collected information is not adequately specified in the forms or during the collection of information from the patient in Government or Private Hospitals. Diagnostic laboratories however do provide the patient with information regarding the security measures put in place to ensure the confidentiality of the information.

(viii) Openness

The information made available to the patient at government and private hospital and diagnostic laboratories is easily intelligible. At every stage of the procedure the explicit consent of the patient is obtained. In government and private hospitals the signature of the patient is obtained on consent forms at every stage of the procedure and the nature and extent of the procedure is explained to the patient in a language that he understands and is comfortable speaking. The information provided is detailed and is provided in simplistic terms so that the patient does at all stages understand the nature of any procedure he is consenting to undergo.

(ix) Accountability

Private hospitals and Diagnostic laboratories have internal and external audit mechanisms in place to check the efficacy of privacy measures. They both have grievance redress mechanisms in the form of patient welfare cells and complaint cells. There is an assigned officer in place to take patient feedback and address and manage the privacy concerns of the patient.

Government hospitals do not have an internal or external audit mechanism in place to check the efficacy of privacy measures. There is however a grievance redressal mechanism in government hospitals in the form of a Public Relations Office that addresses the concerns, complaints, feedback and suggestions of the patients. There is an officer in charge of addressing and managing the privacy concerns of patients. This officer also offers counseling to the patients in case of privacy concerns regarding sensitive information.

International Best Practices and Recommendations

A. European Union
An official EU data protection regulation [69]was issued in January 2012. A key objective of this was to introduce a uniform policy directive across all member states. The regulation, once implemented was to be applicable in all member states and left no room for alteration or amendments.

The regulation calls for Privacy Impact Assessments[70]when there are specific risks to privacy which would include profiling, sensitive data related to health, genetic material or biometric information. This is an important step towards evaluating the nature and extent of privacy regulation required for various procedures and would be effective in the creation of a systematic structure for the implementation of these regulations. The regulation also established the need for explicit consent for sensitive personal data. The basis for this is an inherent imbalance in the positions of the data subject and the data controller, or in simpler terms the patient and the hospital or the life sciences company conducting the research. Thus, implied consent is not enough [71]and a need arises to proceed with the testing only when there is explicit informed consent.

Embedded within the regulation is the right to be forgotten [72]wherein patients can request for their data to be deleted after they have been discharged or the clinical trial has been concluded. In the Indian scenario, patient information is kept for extended periods of time. This can be subject to unauthorized access and misuse. The deletion of patient information once it has been used for the purpose for which it was collected is thus imperative towards the creation of an environment of privacy protection.

Article 81 of the regulation specifies that health data may be processed only for three major processes[73] :

a) In cases of Preventative or occupational medicine, medical diagnosis, the care, treatment or management of healthcare services, and in cases where the data is processed by the healthcare professionals, the data is subject to the obligation of professional secrecy;

b) Considerations of public interest bearing a direct nexus to public health, for example, the protection of legitimate cross border threats to health or ensuring a high standard of quality and safety for medicinal products or services;

c) Or other reasons of public interest such as social protection.

An added concern is the nature and extent of consent. The consent obtained during a clinical trial may not always be sufficient to cover additional research even in instances of data being coded adequately. Thus, it may not be possible to anticipate additional research while carrying out initial research. Article 83[74] of the regulation prohibits the use of data collected for an additional purpose, other that the purpose for which it was collected.

Lastly, the regulation covers data that may be transferred outside the EEA, unless there is an additional level of data protection. If a court located outside the EU makes a request for the disclosure of personal data, prior authorization must be obtained from the local data protection authority before such transfer is made. It is imperative that this be implemented within Indian legislation as currently there is no mechanism to regulate the cross border transfer of personal data.

B. The United States of America
The Health Maintenance Organizations Act, 1973 [75]was enacted with a view to keep up with the rapid development in the Information Technology sector. The digitization of personal information led to new forms of threats with regard to the privacy of a patient. In the face of this threat, the overarching goal of providing effective and yet unobtrusive healthcare still remains paramount.

To this effect, several important federal regulations have been implemented. These include the Privacy and Security Ruled under the Health Insurance Portability and Accountability Act (HIPAA) 1996[76] and the State Alliance for eHealth (2007) [77].The HIPAA privacy rules addressed the use and subsequent disclosure of a patient's personal information under various healthcare plans, medical providers, and clearinghouses. These insurance agencies were the primary agents involved in obtaining a patients information for purposes such as treatment, payment, managing healthcare operations, medical research and subcontracting. Under the HIPAA it is required of insurance agencies to ensure the implementation of various administrative safeguards such as policies, guidelines, regulations or rules to monitor and control inter as well as intra organizational access.

Apart from the HIPAA, approximately 60 laws related to privacy in the healthcare sector have been enacted in more than 34 states. These legislations have been instrumental in creating awareness about privacy requirements in the healthcare sector and improving the efficiency of data collection and transfer. Similar legislative initiative is required in the Indian context to aid in the creation of a regulated and secure atmosphere pertaining to the protection of privacy within the healthcare sector.

C. Australia
Australia has a comprehensive law that deals with sectoral regulations of the right to privacy.An amendment to the Privacy Act1988 [78]applies to all healthcare providers and was made applicable from 21st December 2001.The privacy Act includes the followingpractices:

a. A stringent requirement for informed consent prior to the collection of health related information

b. A provision regarding the information that needs to be provided to individuals before information is collected from them

c. The considerations that have to be taken into account before the transfer of information to third parties such as insurance agencies, including the specific instances wherein this information can be passed on

d. The details that must be included in the Privacy policy of the healthcare service providers' Privacy Policy

e. The securing and storing of information; and

f. Providing individuals with a right to access their health records.

These provisions are in keeping with the 13 National Privacy [79]Principles that represent the minimum standards of privacy regulation with respect to the handling of personal information in the healthcare sector.These guidelines are advisory in nature and have been issued by the Privacy Commissioner in exercise of his power under Section 27(1)(e) [80]of the Privacy Act.

The Act also embodiessimilar privacy principles which include a collection limitation, a definitive use and purpose for the information collected, a specific set of circumstance and an established protocol for the disclosure of information to third parties including the nature and extent of such disclosure, maintenance accuracy ofthe data collected, requisite security measures to ensure the data collected is at all times protected, a sense of transparency,accountability and openness in the administrative functioning of thehealthcare provider and accessibility of the patient to his ownrecords for the purpose of viewing, corroboration or correction.

Additionally, the Act includes the system of identifiers which includes a number assigned by the organization to an individual to identify the purpose of that person's data for the operation of the organization. Further, the Act provides for anonymity wherein individuals have the optionnot to identify themselves while entering into transactions with an organization. The Act also provides for restrictions on the transfer of personal data outside Australia and establishes conclusive and stringent barriers to the extent of collection of personal and sensitive data.These principles although vaguely similar to those highlighted in the A.P. Shah Committee report can be usedto streamline the regulations pertaining to privacy in the healthcare sector and make them more efficient.

Key Recommendations

It is Imperative that Privacy concerns relating to the transnational flow of Private data be addressed in the most efficient way possible. This would involve international cooperation and collaboration to address privacy concerns including clear provisions and the development of coherent minimum standards pertaining to international data transfer agreements. This exchange of ideas and multilateral deliberation would result in creating more efficient methods of applying the provisions of privacy legislation even within domestic jurisdictions.

There is a universal need for the development of a foundational structure for the physical collection, use and storage of human biological specimens (in contrast to the personalinformation that may be derived from those specimens) as these are extremely important aspects of biomedical research and clinical trials. The need for Privacy Impact Assessments would also arise in the context of clinical trials, research studies and the gathering of biomedical data.

Further, there also arises the need for patients to be allowed to request for the deletion of their personal information once it has served the purpose for which it was obtained. The keeping of records for extended periods of time by hospitals and laboratories is unnecessary and can often result in the unauthorized access to and subsequent misuse of such data.

There is a definitive need to ensure the incorporation of safeguards to regulate the protection of patient’s data once accessed by third parties, such as insurance companies. In the Indian Context as well as insurance agencies often have unrestricted access to a patient's medical records however there is a definitive lack of sufficient safeguards to ensure that this information is not released to or access by unauthorized persons either within these insurance agencies or outsourced consultants

The system of identifiers which allocate specific numbers to an individual’s data which can only be accessed using that specific number or series of numbers can be incorporated into the Indian system as well and can simplify the administrative process thus increasing its efficacy. This would afford individuals the privilege of anonymity while entering into transactions with specific healthcare institutions.

An important means of responding to public concerns over potential unauthorized use ofpersonal information gathered for research, could be through the issuing of Certificates of confidentiality as issued in the United States to protectsensitive information on research participants from forced disclosure. [81]

Additionally, it is imperative that frequent discussions, deliberations, conferences and roundtables take place involving multiple stakeholders form the healthcare sector, insurance companies, patient’s rights advocacy groups and the government. This would aid in evolving a comprehensive policy that would aid in the protection of privacy in the healthcare sector in an efficient and collusive manner.

Conclusions

The Right to Privacy has been embodied in a multitude of domestic legislations pertaining to the healthcare sector. The privacy principles envisioned in the A.P Shah Committee report have also been incorporated into the everyday practices of healthcare institutions to the greatest possible extent. There are however significant gaps in the policy formulation that essentially do not account for the data once it has been collected or its subsequent transfer. There is thus an imminent need for institutional collaboration in order to redress these gaps. Recommendations for the same have been made in the report. However, for an effective framework to be laid down there is still a need for the State to play an active role in enabling the engagement between different institutions both in the private and public domain across a multitude of sectors including insurance companies, online servers that are used to harbour a data base of patient records and civil action groups that demand patient privacy while at the same time seek to access records under the Right to Information Act. The collaborative efforts of these multiple stakeholders will ensure the creation of a strong foundational framework upon which the Right to Privacy can be efficiently constructed.

[1] . Report of the group of experts on Privacy chaired by Justice A.P Shah <http://planningcommission.nic.in/reports/genrep/rep_privacy.pdf> [Accessed on 14^th May 2014]

[2] . Nissenbaum, H. (2004). Privacy as Contextual Integrity. Washington Law Review, 79(1), 101-139.

[3] . Ibid.

[4] . Thomas, J. (2009). Medical Records and Issues in Negligence, Indian Journal of Urology : IJU : Journal of the Urological Society of India, 25(3), 384-388. doi:10.4103/0970-1591.56208.

[5] . Ibid

[6] . Plaza, J., &Fischbach, R. (n.d.). Current Issues in Research Ethics : Privacy and Confidentiality. Retrieved December 5, 2011, from http://ccnmtl.columbia.edu/projects/cire/pac/foundation/index.html.

[7] . Ibid.

[8] . The Mental Health Act, 1987 <https://sadm.maharashtra.gov.in/sadm/GRs/Mental%20health%20act.pdf> [Accessed on 14^th May 2014]

[9] . The Mental Health Act, 1987, s. 13(1).

[10] .The Mental Health Act, 1987, s. 38.

[11] .The Mental Health Act, 1987, s. 40.

[12] .The Mental Health Act, 1987, s. 21(2).

[13] .The Mental Health Act, 1987, s. 13(1), Proviso.

[14] . Also see the: Pre-Conception and and Pre-Natal Diagnostic Techniques (Prohibition of Sex Selection) Rules, 1996.

[15] . Pre-Conception and Pre-Natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994, s. 4(3).

[16] . Pre-Conception and Pre-Natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994, s. 4(2). Pre-natal diagnostic techniques shall be conducted for the purposes of detection of: chromosomal abnormalities, genetic metabolic diseases, haemoglobinopathies, sex-linked genetic diseases, congenital anomalies any other abnormalities or diseases as may be specified by the Central Supervisory Board.

[17] .Medical Termination of Pregnancy Amendment Act, 2002, Notification on Medical Termination of Pregnancy (Amendment) Act, Medical Termination of Pregnancy Regulations, 2003 and Medical Termination of Pregnancy Rules, 2003.

[18] .Medical Termination of Pregnancy Act, 1971 (Amended in 2002), s. 2(4) and 4, and Medical Termination of Pregnancy Rules, 2003, Rule 8

[19] .Medical Termination of Pregnancy Regulations, 2003, Regulation 4(5).

[20] .Medical Termination of Pregnancy Regulations, 2003, Regulation 5.

[21] .Medical Termination of Pregnancy Regulations, 2003, Regulation 4(2).

[22] .Medical Termination of Pregnancy Regulations, 2003, Regulations 4(2) and 4(4).

[23] . Code of Ethics Regulations, 2002 available at

http://www.mciindia.org/RulesandRegulations/CodeofMedicalEthicsRegulations2002.aspx .

[24] . Code of Ethics Regulations, 2002 Chapter 2, Section 2.2.

[25] .Ethical Guidelines for Biomedical Research on Human Subjects. (2006) Indian Council of Medical Research New Delhi.

[26] . Informed Consent Process, Ethical Guidelines for Biomedical ResearchonHuman Subjects (2006). Indian Council of Medical Research New Delhi.P. 21.

[27] . Statement of Specific Principles for Human Genetics Research, Ethical Guidelines for Biomedical ResearchonHuman Subjects (2000) . Indian Council of Medical Research New Delhi.P. 62.

[28] . General Ethical Issues. Ethical Guidelines for Biomedical ResearchonHuman Subjects (2006). Indian Council of Medical Research New Delhi.P. 29.

[29] . Statement of Specific Principles for Epidemiological Studies, Ethical Guidelines for Biomedical ResearchonHuman Subjects (2000) . Indian Council of Medical Research New Delhi P. 56.

[30] . Statement of General Principles, Principle IV and Essential Information on Confidentiality for Prospective Research Participants, Ethical Guidelines for Biomedical ResearchonHuman Subjects (2006). Indian Council of Medical Research New Delhi.P. 29.

[31] . The IRDA (Third Party Administrators - Health Services) Regulations 2001, (2001), Chapter 5. Section 2.

[32] . The IRDA (Sharing Of Database for Distribution of Insurance Products) Regulations 2010.

[33] . The IRDA (Sharing Of Database For Distribution Of Insurance Products) Regulations 2010.

[34] . The IRDA (Sharing Of Database For Distribution Of Insurance Products) Regulations 2010

[35] . List of TPAs Updated as on 19th December, 2011, Insurance Regulatory and Development Authority (2011), http://www.irda.gov.in/ADMINCMS/cms/NormalData_Layout.aspx?page=PageNo646 (last visited Dec 19, 2011).

[36] . The IRDA, Guideline on Outsourcing of Activities by Insurance Companies, (2011).

[37] . The IRDA, Guideline on Outsourcing of Activities by Insurance Companies, (2011), Section 9.11. P. 8.

[38] .The Epidemic Diseases Act, 1897.

[39] .The Epidemic Diseases Act, 1897. s. 2.1.

[40] .The Epidemic Diseases Act, 1897, s. 2.2(b).

[41] . The National Policy for Persons with Disabilities, 2006, Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Rules, 1996.

[42] . Research, National Policy for Persons with Disabilities, 1993.

[43] . Survey of Disabled Persons in India. (December 2003) National Sample Survey Organization. Ministry of Statistics and Programme Implementation. Government of India.

[44] .Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act. 1995, Section 35.

[45]. Research. National Policy for Persons with Disabilities, 2003.

[46]. http://www.lawyerscollective.org/files/Anti%20rights%20practices%20in%20Targetted%20Interventions.pdf

[47]. http://www.lawyerscollective.org/files/Anti%20rights%20practices%20in%20Targetted%20Interventions.pdf

[48]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.22.

[49]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.16.

[50]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.16.

[51]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.14.

[52]. http://www.hivaidsonline.in/index.php/HIV-Human-Rights/legal-issues-that-arise-in-the-hiv-context.html

[53]. Chakrapani et al, (2008) ‘HIV Testing Barriers and Facilitators among Populations at-risk in Chennai, India’, INP, p 12.

[54]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.24.

[55] .http://www.indiankanoon.org/doc/570038/

[56] .http://www.indiankanoon.org/doc/570038/

[57] .http://www.indiankanoon.org/doc/680703/

[58] . No person accused of any offence shall be compelled to be a witness against himself’, (the 'right to silence').

[59] . http://indiankanoon.org/doc/338008/

[60] . http://www.hrdc.net/sahrdc/hrfeatures/HRF205.pdf

[61] . AIR 1992 SC 392.

[62] . 96 (2002) DLT 354.

[63] .AIR 2000 A.P 156.

[64] .http://indiankanoon.org/doc/382721/

[65] .http://indiankanoon.org/doc/859256/

[66] .See Sections 24, 37, 38 and 39 of The Prisons Act, 1894 (Central Act 9 of 1894) Rules 583 to 653 (Chapter XXXV) and Rules 1007 to 1014 (Chapter LVII) of Andhra Pradesh Prisons Rules, 1979

[67] .Section 10-A,17(4) ,19(2) Immoral Traffic (Prevention) Act 1956

[68] .http://www.indiankanoon.org/doc/1309207/

[69] . http://ec.europa.eu/justice/data-protection/document/review2012/com_2012_11_en.pdf

[70] . Article 33, Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation) < http://ec.europa.eu/justice/data-protection/document/review2012/com_2012_11_en.pdf> [Accessed on 14^th May, 2014]

[71] .Article 4 (Definition of “Data Subject’s Consent”), Article 7, Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

[72] . Article 17, “Safeguarding Privacy in a Connected World – A European Data Protection Framework for the 21st

Century” COM(2012) 9 final. Based on, Article 12(b), EU Directive 95/46/EC – The Data Protection Directive at <http://www.dataprotection.ie/docs/EU-Directive-95-46-EC-Chapter-2/93.htm> [Accessed on 14^th May, 2014]

[73] . Article 81, Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

[74] .Article 83, Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

[75] . Health Maintainence and Organization Act 1973, Notes and Brief Reports available at http://www.ssa.gov/policy/docs/ssb/v37n3/v37n3p35.pdf [Accessed on 14th May 2014].

[76] . Health Insurance Portability and Accountability Act, 1996 available at http://www.hhs.gov/ocr/privacy/hipaa/administrative/statute/hipaastatutepdf.pdf [Accessed on 14th May 2014]

[77] . Illinois Alliance for Health Innovation plan available at http://www2.illinois.gov/gov/healthcarereform/Documents/Alliance/Alliance%20011614.pdf [Accessed on 14^th May 2014]

[78] . The Privacy Act 1988 available at http://www.comlaw.gov.au/Series/C2004A03712 [Accessed on 14th May 2014]

[79] . Schedule 1, Privacy Act 1988 [Accessed on 14^th May 2014]

[80] .Section 27(e), Privacy Act 1988 [Accessed on 14^th May 2014]

[81] . Guidance on Certificates of Confidentiality, Office of Human Research Protections, U.S Department of Health and Human Services available at http://www.hhs.gov/ohrp/policy/certconf.pdf [Accessed on 14^th May, 2014].

For more details visit https://cis-india.org/internet-governance/blog/privacy-in-healthcare-policy-guide

Privacy Gaps in India's Digital India Project

Anisha Gupta and Edited by Amber Sinha — 2017-02-21T01:55:59Z

This paper seeks to assess the privacy protections under 15 e-governance schemes: Soil Health Card, Crime and Criminal Tracking Network & Systems (CCTNS), Project Panchdeep, U-Dise, Electronic Health Records, NHRM Smart Card, MyGov, eDistricts, Mobile Seva, Digi Locker, eSign framework for Aadhaar, Passport Seva, PayGov, National Land Records Modernization Programme (NLRMP), and Aadhaar.

Introduction

The Central and State governments in India have been increasingly taking steps to fulfill the goal of a ‘Digital India’ by undertaking e-governance schemes. Numerous schemes have been introduced to digitize sectors such as agriculture, health, insurance, education, banking, police enforcement, etc. With the introduction of the e-Kranti program under the National e-Governance Plan, we have witnessed the introduction of forty four Mission Mode Projects.[1]

The digitization process is aimed at reducing the human handling of personal data and enhancing the decision making functions of the government. These schemes are postulated to make digital infrastructure available to every citizen, provide on demand governance and services and digital empowerment.[2]

In every scheme, personal information of citizens are collected in order to avail their welfare benefits. While the efforts of the government are commendable, the efficacy of these programs in the absence of sufficient infrastructure for security raises various concerns. Increased awareness among citizens and stronger security measures by the governments are necessary to combat the cogent threats to data privacy arising out of the increasing rate of cyberattacks.[3]

The schemes identified for the purpose of this paper have been introduced by the following government agencies:

S.No.	Scheme	Government Agency Involved
1	SOIL HEALTH CARD A scheme designed to provide complete soil information to farmers.	Department of Agriculture Corporation (DACNET)
2	CRIME AND CRIMINAL NETWORK TRACKING & SYSTEMS (CCTNS) A scheme that seeks to facilitate the functioning of the criminal system through online records, and has proposed data analysis for the purpose of trend setting, crime analysis, disaster and traffic management, etc.	National Crime Records Bureau (NCRB)
3	U-Dise Serves as the official data repository for educational information.	Ministry of Human Resource Development (MHRD)
4	PROJECT PANCHDEEP The use of Unified Information System for implementation of health insurance facilities under ESIC (Employee State Insurance Corporation).	Ministry of Labour & Employment
5	ELECTRONIC HEALTH RECORDS A scheme to digitally record all health data of a citizen from birth to death.	Ministry of Health and Family Welfare (MoHFW)
6	NHRM SMART CARD Under the Rashtriya Swasthya Bima Yojana (RSBY) Scheme, every beneficiary family is issued a biometric enabled smart card for providing health insurance to persons covered under the scheme.	Ministry of Health and Family Welfare (MoHFW)
7	MYGOV An online platform for government and citizen interaction.	The Department of Electronics and Information Technology (DeITY)
8	EDISTRICTS Common Service Centres are being established under the scheme to provide multiple services to the citizens at a district level.	DeITY
9	MOBILE SEVA A centralized mobile app, used to host various mobile applications.	DeITY
10	DIGILOCKER A scheme that provides a secure dedicated personal electronic space for storing the documents.	DeITY
11	eSIGN FRAMEWORK FOR AADHAAR eSign is an online electronic signature service to facilitate an Aadhaar holder to digitally sign a document.	Ministry of Electronic and Information Technology
12	PAYGOV A centralized platform for all citizen to government payments.	DeITY and NSDL Database Management Limited (NDML)
13	PASSPORT SEVA An online scheme for passport application and documentation.	Ministry of External Affairs
14	NATIONAL LAND RECORDS MODERNIZATION PROGRAM (NLRMP) The scheme seeks to modernize land records system through digitization and computerization of land records.	DeITY and NDML
15	AADHAAR A scheme for unique identification of citizens for the purpose of targeted delivery of welfare benefits.	Unique Identification Authority of India (UIDAI)

Read the full paper

[1]. Introduction to Digital India, available at http://www.governancenow.com/ news/regular-story/securing-digital-india

[2]. Id.

[3]. GN Bureau, Securing Digital India, Governance Now (June 11, 2016) available at http://www.governancenow.com/news/regular-story/securing-digitalindia

For more details visit https://cis-india.org/internet-governance/blog/privacy-gaps-in-indias-digital-india-project

Privacy Concerns Overshadow Monetary Benefits of Aadhaar Scheme

Pranesh Prakash and Amber Sinha — 2016-03-17T16:12:26Z

Since its inception in 2009, the Aadhaar system has been shrouded in controversy over issues of privacy, security and viability. It has been implemented without a legislative mandate and has resulted in a PIL in the Supreme Court, which referred it to a Constitution bench. On Friday, it kicked up more dust when the Lok Sabha passed a Bill to give statutory backing to the unique identity number scheme.

The article was published in the Hindustan Times on March 12, 2016.

There was an earlier attempt to give legislative backing to this project by the UPA government, but a parliamentary standing committee, led by BJP leader Yashwant Sinha, had rejected the bill in 2011 on multiple grounds. In an about-turn, the BJP-led NDA government decided to continue with Aadhaar despite most of those grounds still remaining.

Separately, there have been orders passed by the Supreme Court that prohibit the government from making Aadhaar mandatory for availing government services whereas this Bill seeks to do precisely that, contrary to the government’s argument that Aadhaar is voluntary.

In some respects, the new Aadhaar Bill is a significant improvement over the previous version. It places stringent restrictions on when and how the UID Authority (UIDAI) can share the data, noting that biometric information — fingerprint and iris scans — will not be shared with anyone. It seeks prior consent for sharing data with third party. These are very welcome provisions.

But a second reading reveals the loopholes.

The government will get sweeping power to access the data collected, ostensibly for “efficient, transparent, and targeted delivery of subsidies, benefits and services” as it pleases “in the interests of national security”, thus confirming the suspicions that the UID database is a surveillance programme masquerading as a project to aid service delivery.

The safeguards related to accessing the identification information can be overridden by a district judge. Even the core biometric information may be disclosed in the interest of national security on directions of a joint secretary-level officer. Such loopholes nullify the privacy-protecting provisions.

Amongst the privacy concerns raised by the Aadhaar system are the powers it provides private third parties to use one’s UID number. This concern, which wouldn’t exist without a national ID squarely relates to Aadhaar and needs a more comprehensive data protection law to fix it. The supposed data protection under the Information Technology Act is laughable and inadequate.

The Bill was introduced as a Money Bill, normally reserved for matters related to taxation, borrowing and the Consolidated Fund of India (CFI), and it would be fair to question whether this was done to circumvent the Rajya Sabha.

None of the above arguments even get to the question of implementation.

Aadhaar hasn’t been working. When looking into reasons why 22% of PDS cardholders in Andhra Pradesh didn’t collect their rations it was found that there was fingerprint authentication failure in 290 of the 790 cardholders, and in 93 instances there was an ID mismatch. A recent paper in the Economic and Political Weekly by Hans Mathews, a mathematician with the CIS, shows the programme would fail to uniquely identify individuals in a country of 1.2 billion.

The debate shouldn’t be only about the Aadhaar Bill being passed off as a Money Bill and about the robustness of its privacy provisions, but about whether the Aadhaar project can actually meet its stated goals.

For more details visit https://cis-india.org/internet-governance/blog/hindustan-times-amber-sinha-pranesh-prakash-march-12-2016-privacy-concerns-overshadow-monetary-benefits-of-aadhaar-scheme

Privacy concerns multiply for Aadhaar, India’s national biometric identity registry

praskrishna — 2017-03-22T14:38:52Z

The largest and most sophisticated biometric identity system of any country in the world, India’s Aadhaar, is sparking new fears that the personal data it stores on more than 1.1 billion people could be vulnerable to exploitation.

The article by Kaelyn Lowmaster was published by One World Identity on March 17, 2017, Sunil Abraham was quoted.

Aadhaar, which translates to “foundation” in Hindi, is a unique 12-digit code tied to citizens’ biometric data and personal information. The system was launched in 2009 in an effort to extend social services to India’s millions of unregistered citizens, and to cut down on welfare benefit “leakage” resulting from an opaque and often corrupt bureaucracy.

Constructing a centralized repository of biometric data on nearly a fifth of the world’s population has raised serious concerns among privacy advocates.

The government has also looked to Aadhaar data to underpin mobile payment transfer platforms, which have become crucial for cashless transactions during the country’s demonetization push over past year.

But constructing a centralized repository of biometric data on nearly a fifth of the world’s population has raised serious concerns among privacy advocates, who cite several vulnerabilities both with the Aadhaar system and the Modi administration’s planned expansion.

Despite this, recent metrics indicate that Aadhaar has been enormously successful in achieving those goals. Though the program is theoretically voluntary, more than 99% of Indian adults are now enrolled. Over three billion individual identity verifications have been conducted, and some reports indicate that the Indian government is saving a billion dollars per year now that welfare subsidies can be paid to citizens directly through Aadhaar-verified fund transfers.

Prime Minister Narendra Modi has ambitions to broaden the system even further, seeking to use Aadhaar as the gateway for accessing government programs ranging from public education to subsidized cooking gas, as well as partnering with private companies to offer services facilitated by the Aadhaar database.

Concerns, however, remain. One primary worry is that India’s legal framework for information security is still weak and fragmented, despite government assurances that Aadhaar biometrics have never been misused or stolen.

“There are no regulations in India on safeguards over and procedures for the collection, processing, storage, retention, access, disclosure, destruction, and anonymization of sensitive personal information by any service provider,” according to a 2016 World Bank report.

A patchwork of rules outlining “reasonable security practices and procedures” for personal data has accumulated since Aadhaar was launched, but there is no codified law outlining how data in the system must be secured, or what penalties exist for potential leaks, fraud or misuse.

“Imagine a situation where the police (are) secretly capturing the iris data of protesters and then identifying them through their biometric records” – Sunil Abraham, executive director of the Centre for Internet and Society in Bangalore

This regulatory gap poses a particularly acute risk now that the government has begun offering companies and app developers support for starting new businesses that use Aadhaar data. Through a new initiative called IndiaStack, the administration is providing open program interfaces for companies in fintech, healthcare, and other areas to integrate Aadhaar-based transactions into their business platforms. While IndiaStack’s terms of use explicitly state that user consent is required for any information sharing between service providers and the Aadhaar database, doubts remain about the integrity of the network infrastructure and the lack of clarity surrounding acceptable information sharing and storing protocols.

Another source of concern is the risk that Aadhaar information could be leveraged by the government itself for political purposes.

“Maintaining a central database is akin to getting the keys of every house in Delhi and storing them at a central police station,” Sunil Abraham, executive director of the Centre for Internet and Society in Bangalore, told Reuters. “It is very easy to capture iris data of any individual with the use of next generation cameras. Imagine a situation where the police (are) secretly capturing the iris data of protesters and then identifying them through their biometric records.”

Further stoking fears of federal overreach, the Modi administration has attempted to make Aadhaar registration mandatory in certain sectors, violating a Supreme Court ruling from October 2015 that enrollment must remain voluntary.

Still, the benefits of building on the Aadhaar identity system appear to be outweighing the risks for now, and the system is gathering momentum worldwide. The World Bank is helping market the Aadhaar model abroad, and Russia, Morocco, Tunisia, and Algeria have all expressed interest in instituting national biometric identity programs of their own. Microsoft is already on board, and Google is negotiating ways to get involved.

Aadhaar may indeed live up to is potential and become the global standard for universal legal identity, but until India can manage to create more robust mechanisms to protect citizens’ personal data, their security could remain uncertain.

For more details visit https://cis-india.org/internet-governance/news/one-world-indentity-kaelyn-lowmaster-march-17-2017-privacy-concerns-multiply-for-aadhaar-indias-national-biometric-identity-registry

Privacy Concerns in Whole Body Imaging: A Few Questions

elonnai — 2012-03-21T10:09:02Z

Security versus Privacy...it is a question that the world is facing today when it comes to using the Whole Body Imaging technology to screen a traveller visually in airports and other places. By giving real life examples from different parts of the world Elonnai Hickok points out that even if the Government of India eventually decides to advocate the tight security measures with some restrictions then such measures need to balanced against concerns raised for personal freedom. She further argues that privacy is not just data protection but something which must be viewed holistically and contextually when assessing new policies.

What is Whole Body Imaging?

Whole Body Imaging is an umbrella term that includes various technologies that can produce images of the body without the cover of clothing. The purpose of WBI technology is to screen travellers visually in order to detect weapons, explosives and other threat items more thoroughly, without the cover of clothing. Examples include: Ultrasonic Imaging Technology, Superconducting Quantum Interference Device, T-ray Technology, Millimeter Wave Technology, MM-wave Technology, and X-ray Scanning Systems. The two main types of scanners used for security screening are: Millimeter Wave and Backscatter machines. The Millimeter Wave machines send radio waves over a person and produce a three-dimensional image by measuring the energy reflected back. Backscatter machines use low-level x-rays to create a two-dimensional image of the body. The machines show what a physical pat-down would potentially reveal as well, but what a metal detector would not find – for example, they will detect items such as chemical explosives and non-metallic weapons.

How are These Technologies Being Used - Two News Items to Ponder:

News Item One

In 2009-2010 a Nigerian attempted to blow up a Detroit-bound aircraft in the United States. In response to this attempt, in addition to the heightened security concerns in light of 9/11, the United States has pushed for the greater use of full-body scanners among other initiatives. The hope is that the scanners will bring a heightened level of security and stop potential attacks from occurring in the future.

Also, in response to the attempted attack on the U.S, the Mumbai Terrorist attacks, and many other incidents, India has likewise considered the implementation of full-body scanners in airports. According to an article published on 2 January 2010 in The Times of India, soon after the incident in the United States, the Indian Intelligence Bureau submitted a comprehensive airport review that spoke about the need for full-body scanners. On 6 July 2010, the Times of India issued a story on how full-body scanners will not be used at the two Dubai airports. The story went on to explain in detail how the airports in Dubai have decided against the use of full-body scanners as a security measure, because they ‘contradict’ Islam, and because the government respects the privacy of individuals and their personal freedom. The head of the Dubai police department was quoted as saying “The scanners will be replaced with other inspection systems that reserve travelers' privacy.” At airports that utilize the scanners, not everyone is required to go through a full-body scanner at the security checkpoint (I myself have never been in one), but instead the authority will randomly select persons to be scanned. An individual has the option to opt out of the scan, but if they choose to do so, they must undergo a thorough body pat-down search. During the scan, the officer zoomed over parts of the image for a better look, if any portion of the image appears suspicious. Once a scan is completed, the passenger waits while the scan is sent to and reviewed by another officer elsewhere. The officers are connected by wireless headsets. If no problems are found, the image is supposed to be erased. If a problem is found, the officer tells the checkpoint agent where the problem is, and the image is retained until the issue is resolved, and then it is erased. The wireless transmission of the image by a computer to another officer for analysis is a built-in safeguard, because the agent who sees the image never sees the passenger and the officer who sees the passenger never sees the image.

Despite this, the machines are controversial because they generate images of a passengers' entire body, which raises concerns as to the possible privacy violations that could occur. Besides the physical invasion that the scanners pose, privacy concerns have centered on the fact that the actual implementation of the procedures for retention and deletion of images is unclear. For instance, in Florida, images from a scanner at a courthouse were found to have been leaked and circulated. In 2008, the US Department of Homeland Security did a report on the privacy of whole-body imaging and its compliance with the Fair Information Practice Principles. Among other safeguards, the report concluded that the image does not provide enough details for personal identification, the image is not retained, and the machine could in fact work to protect the privacy of an individual by sparing the person the indignity of a pat-down.

News Item Two

In October this year, Fox News came out with a story that told how the use of x-ray scanners, similar to the ones used in airports, are now being placed in vans that can see into the inside of the vehicles around them. The vans are used to detect car bombs, drugs, radioactivity and people hiding. The vans have been used at major crowd events like the Super Bowl. According to the Department of Homeland Security, the vans have led to the seizure of 89,000 pounds of narcotics and $4 million worth of currency. In vans the technology used is the backscatter x-ray machine. The cars are more controversial than the scanners at airports, because it is not possible to obtain consent from the target vehicle, and a person in a car does not have the option to opt out for a thorough car search. Furthermore, images are not sent to another authority to be analyzed, but are instead analyzed by the authority in the car. Reactions to the vans have been mixed. Some worry about the invasion to privacy that the vans pose, the lack of consent that an individual gives to having his car scanned, and the fact that these scans are conducted without a warrant. Others believe that the security the vans can provide far outweighs the threats to privacy. In airports, if evidence is found against a person, it is clear that airport authorities have the right to stop the individual and proceed further. This right is given by an individual‘s having chosen to do business at the airport, but a person who is traveling on a public street or highway has not chosen to do business there. It is much more difficult to conclude that by driving on a road an individual has agreed to the possible scanning of his/her car.

Questions at the Heart of the WBI Debate:

Whole Body Imaging raises both simple and difficult questions about the dilemma of security vs. privacy, and privacy as a right vs. privacy as protection. If privacy is seen as a constitutional right, as it is in the European Union under the Convention on Human Rights, then Whole Body Imaging raises questions about the human body — its legal and moral status, its value, its meaning, and the dignity that is supposed to be upheld by the virtue of an individual’s privacy being a right. If Whole Body Imaging threatens the dignity of an individual, is it correct to permit the procedure at airports and allow vans with x-ray machines to roam the streets? This question segues into a deeper question about security over privacy. The security appeal of WBI technology is its pro-active ability to provide intelligence information about potential threats before anything actually happens. Does the security that these machines bring trump the right to privacy that they could be violating? Isn’t this particularly true given that airport scanning is of only a randomly-selected portion of travelers? Is the loss of privacy that occurs proportional to the need and the means met? What is the purpose of security in these contexts? All privacy legislation must work to strike a balance between security and privacy. Typically, in terms of governments and security, restrictions are placed on the amount of unregulated monitoring that governments can do through judicial oversight. Warrantless monitoring is typically permitted only in the case of declared national emergencies. Should WBI technology be subject to the same restrictions as, say, wiretapping? or would this defeat the purpose of the technology, given that the purpose is to prevent an event that could lead into a declared national emergency. Furthermore, how can legislation and policy, which has traditionally been crafted to be reactive in nature, adequately respond to the pro-active nature of the technology and its attempt to stop a crime before it happens?

How Have Other Countries Responded to Whole Body Imaging and How Should India Respond?

Countries around the world have responded differently to the use of whole body imaging. In the EU, full-body scanners are used only in the UK, and their use there is being protested, with the Human Rights Charter being used to argue that full-body imaging lowers human dignity and violates a person’s right to privacy. In EU countries such as Germany, there has been a strong backlash against full-body image scanners by calling them ‘Naked Scanners’. Nonetheless, according to an ABC report, in 2009 the Netherlands announced that scanners would be used for all flights heading from Amsterdam's airport to the United States.

In the US, where scanners are being used, EPIC is suing the TSA on the grounds that the TSA should have enacted formal regulations to govern their use. It argues that the body scanners violate the Fourth Amendment, which prohibits unreasonable searches and seizures. Canada has purchased 44 new imaging scanners but has suggested using image algorithms to protect the individuals’ privacy even further. A Nigerian leader also pledged to use full-body scanners.

Though India has not implemented the use of WBI technology, it has considered doing so twice, in 2008 and again in 2010. Legally, India would have to wrestle with the same questions of security vs. privacy that the world is facing. From the government’s demand for the Blackberry encryption keys and the loose clauses in the ITA and Telegraph Act that permit wiretapping and monitoring by the government, it would appear that the Government of India would advocate the tight security measures with few restrictions, and would welcome the potential that monitoring has to stop terror from occurring. But this would have to be balanced against the concerns raised by the police officers’ observation in the Times of India that the use of scanners, was “against Islam, and an invasion of personal freedom.” It is not clear which value would be given priority.

The variation in responses and the uneven uptake of the technology around the world shows how controversial the debate between security and privacy is, and how culture, context, and perception of privacy all contribute to an individual’s, a nation’s, and a country’s willingness or unwillingness to embrace new technology. The nature of the debate shows that privacy is not an issue only of data protection, that it is much more than just a sum of numbers. Instead, privacy is something that must be viewed holistically and contextually, and that must be a factor when assessing new policies.

For more details visit https://cis-india.org/internet-governance/blog/privacy-concerns-in-whole-body-imaging-a-few-questions