People with disabilities and elderly people are not a homogeneous group – whether in how they experience datafication in a wealthy country such as Germany nor in how Covid-19 affects their lives. However, what unites them is the old, highly ambivalent struggle over classifications: Who counts as being at-high-risk? Who receives vaccination soon? Who has to stay at home until fall?

by Ute Kalender

read in German

What is the situation of people with disabilities and elderly people in a country like Germany, which was subject to an enormous digitalisation push last year due to Corona? If we believe new and old cyberfeminisms, then people with disabilities and elderly people should be surfing at the top of the Corona-induced datafication wave. For example Donna Haraway, considered people with disabilities as the ultimate examples for cyborgism – the ideal subjects of a technological world. She suggested that because of their intimate relations with communication devices, “[p]erhaps paraplegics and other severely handicapped [sic] people can (and sometimes do) have the most intense experiences of complex hybridization.” And in current texts of computer-friendly Xenofeminisms we regularly encounter people with disabilities. Through the self-determined repurposing of digital technologies, they would reject discrimination they have experienced in the name of a natural order.

It is not hard to guess that for people with disabilities everyday technological life during Corona is far more complex. However, if you are uneasy now because you fear the authenticity cudgel– it is good so. I will not refer to the real experiences of people with disabilities in a datafied Corona world in order to expose the above cyberfeminist notions of people with disabilities as idealized or ideological. Experience, after all, is a too sticky business to seriously relate to. Instead I will stay with the synthetic: with the Instagram videos of crip activists on #ZeroCovid, a movement for a European shutdown in solidarity, with my impressions of my parents’ lives, and with my inaccurate nondisabled projections on people with disabilities in the streets of Berlin.

Let’s start with my 80-ish, West German parents. Lower class background, partly with severe disabilities. In 2020 they were forced into digitalisation. A major telecommunications company switched from analog to digital, terminated their inexpensive 40 years old contract and made them sign a new, more expensive one. After initial annoyance, I bought my parents a tablet. My father had to go to the hospital at increasingly shorter intervals and because of Corona we could not visit him. Perhaps video calls would make his stays more bearable? Soon, my mother was eagerly sending messages via Whatsapp, complaining about my hairstyle in pictures she found on my website, and dragging several puzzled friends from remote cities into video calls. When my father saw my and my sister’s face on the tablet, he was always happy, close to tears, and enthusiastically kissed the tablet’s surface. And yet he couldn’t find access and would probably never use the device in the hospital. The font too small, the interface too confusing, the steps into the online space impossible to remember. Quite different from friends of mine in Brazil. The same age, but with more digital literacy. At least: Before another hospital approached, we managed an early vaccination appointment for my father at the end of February. Despite collapsing servers in North Rhine-Westphalia, a state in the west of Germany.

Other people with disabilities and chronic diseases will probably have to wait until the end of summer for a vaccination. The younger student with spina bifida who does not live in a care home as well as the 55-year-old woman with lung cancer who, freshly operated, now sits isolated at her home. The German vaccination regulation against Corona excludes both from being vaccinated soon. Disability activist Raul Krauthausen sees this as one of the biggest misunderstandings in Germany – that the at-high-risk group consists exclusively of the very old and lives in homes. There are 100,000 younger people with chronic diseases. They employ assistants, have children, partners and friends. All these people fall through the net since the beginning of Germany’s protective measures. They don’t receive masks, protective clothing and rapid tests. They don’t get care bonuses for their assistants or family caregivers, and there are no vaccinations for these people.

The critics do show solidarity with those who are inside the death trap of a nursery home and with the over-80s. Nevertheless, the statements show that a battle has begun: It is the old, highly ambivalent battle over the double-edged sword of risk classification – the inclusion in the risk group with high vaccination priority. The interventions also remind us that all classification involves a moral agenda. Classifications value the lives of some and silence other lives. Classifications grant access to resources to one group and deny resources to another.

And yet the interventions are also led by those who have access to digital devices and infrastructures. These actors skillfully navigate social media such as Instagram and Facebook: The precious disabled, the “escourt cripples”, as the disabled activist Matthias Vernaldi described the more priviledged people with disability. He sadly passed away last year. The interventions are not led by those who live in zones of the Global South in a rich country like Germany. In sum: the interventions show that people with disabilities and the elderly are not a homogeneous group nor a passive one – and certainly not a group that is suffering from living their independent lives. Nevertheless, I also wonder about the point of view of those with whom I rarely speak. Mostly not at all, but who I encounter a few times a day. Betty the princess-prank from Kottbusser Tor, vibrant area in the eastern part of Berlin. Or Scream-Stubi, who lives in a tent near the S-Bahn Ring in Neukölln, a southeastern gentrified borough of Berlin. In their case, it is impossible to say whether their disabilities, their mental issues, emerged during their lives in the street or, conversely, whether their disabilities led to a life in the streets. Betty and Stubi do not have a cell phone, nor are they currently being contacted and invited for vaccination. They fall through the German data grid – perhaps they want to fall through and do not want to be registered. And maybe it’s like a friend with a disability, a professor of rehabilitation sciences, once said in one of our heated, night-long discussions about accessible apps: The problem is not digitalization, the problem is poverty.

About the author

Dr. Ute Kalender is a cultural scientist from Berlin. As a qualitative researcher, she works in a research project on intersexuality at Charité University Medicine and in Digitale Akademie Pflege 4.0–a project on the digitalisation of the care sector.

The Battle for the At-Risk Group: The Impact of Covid-19 on Elderly People and People with Disabilities in Digital Germany

People with disabilities and elderly people are not a homogeneous group – whether in how they experience datafication in a wealthy country such as Germany nor in how Covid-19 effects their lives. However, what unites them is the old ambivalent struggle over classifications: Who counts as being at-high-risk? Who receives vaccination? Who has to stay at home until fall?  

read in English

by Ute Kalender

Wie ist die Situation von Menschen mit Behinderung und älteren Menschen in einem Land wie Deutschland, das im letzten Jahr durch Corona einem enormen Digitalisierungsschub unterlag?

Glauben wir neuen und alten Cyberfeminismen, dann müssten Menschen mit Behinderung und ältere Menschen ganz oben auf der coronabedingten Datafizierungswelle surfen. Für Donna Haraway etwa galten Menschen mit Behinderung als Cyborgs schlechthin – als ideale Subjekte einer technologischen Welt. Sie vermutete, dass wegen ihren intimen Verbindungen mit Prothesen und Technologien “[p]erhaps paraplegics and other severely handicapped people can (and sometimes do) have the most intense experiences of complex hybridization”. Und auch in den aktuellen Texten des computerfreundlichen Xenofeminismus sind Menschen mit Behinderung vielfach anzutreffen. Durch die selbstbestimmte Aneignung von digitalen Technologien weisen sie Diskriminierungen im Namen einer natürlichen Ordnung zurück.

Dass sich der technologische Corona-Alltag komplexer gestaltet, ist schwer zu erraten. Bei wem sich jetzt allerdings ein Unbehagen breit macht, weil sie die Authentizitätskeule fürchtet – gut so. Ich habe nicht vor, mich auf die wirklichen Erfahrungen von Menschen mit Behinderung in einer datafizierten Coronawelt zu beziehen, um die digitalfeministischen Vorstellungen von Menschen mit Behinderung als idealisiert oder ideologisch zu entlarven. Erfahrung ist ja bekanntlich etwas zu Klebriges, als dass wir uns ernsthaft darauf beziehen könnten. Nein ich bleibe beim Synthetischen, bei den Instagram-Videos von Krüppelaktivis_innen zu #ZeroCovid, einer Bewegung, die sich für den solidarischen europaweiten Shutdown einsetzt, bei Eindrücken vom Leben meiner Eltern und bei den Projektionen, die ich als nicht-behinderte Frau auf Menschen mit Behinderung habe, die ich in den Straßen Berlins treffe.

Beginnen wir mit meinen um die 80-jährigen, teils stark gehandicapten, westdeutschen Unterklasse-Eltern. Sie wurden 2020 zwangsdigitalisiert. Ein großes Telekommunikations-Unternehmen stellte von analog auf digital um, kündigte ihnen den preiswerten jahrzehntealten Vertrag und ließ sie einen neuen, teureren abschließen. Nach anfänglichem Ärger kaufte ich meinen Eltern ein Tablet. Mein Vater musste in immer kürzeren Abständen ins Krankenhaus und durfte dort wegen Corona nicht besucht werden. Vielleicht würden Videotelefonate seine Aufenthalte erträglicher machen. Meine Mutter verschickte bald eifrig Nachrichten über Messengerdienste, beanstandete meine Frisur auf Fotos, die sie von mir im Internet fand und verwickelte etliche verdutzte Bekannte in entfernten Städten in Videokonferenzen. Wenn mein Vater meines und das Gesicht meiner Schwester auf dem Tablet sah, freute er sich zwar immer, war den Tränen nahe und küsste begeistert die Oberfläche des Tablets, fand aber keinen Zugang und würde das Gerät im Krankenhaus wohl niemals anschmeißen. Die Schrift zu klein, die Oberfläche zu unruhig, die Schritte in den Onlineraum nicht zu merken. Ganz anders als Freunde von mir in Brasilien. Im gleichen Alter, aber digital kompetenter. Immerhin: Bevor sich wieder ein Krankenhausaufenthalt ankündigte, ergatterten wir für meinen Vater einen frühen Impftermin Ende Februar. Trotz zusammenbrechender Server zur Terminvergabe in Nord Rhein Westphalen, einem Bundesland im Westen von Deutschland gelegen.

Andere Menschen mit Behinderung und chronischen Krankheiten müssen vermutlich bis Ende des Sommers auf eine Impfung warten. Der jüngere Student mit Spina Bifida, der nicht im Heim lebt ebenso wie die 55-jährige Frau mit Lungenkrebs, die frisch operiert jetzt isoliert zu Hause sitzt. Die deutsche Corona-Impfverortung schließt sie von einer baldigen Impfung aus. Der Behinderten-Aktivist Raul Krauthausen sieht darin eines der größten Missverständnisse in Deutschland – dass die Risikogruppe ausschließlich aus Hochaltrigen besteht und in Heimen lebt. Es gebe 100-tausende jüngere Menschen mit chronischen Krankheiten. Sie beschäftigen Assistent_innen, haben Kinder, Partner_innen und Freund_innen. All diese Leute fallen seit Beginn der Schutzmaßnahmen durch das Raster, erhalten keine Masken, Schutzkleidungen und Schnelltests. Sie bekommen keine Pflegeboni für ihre Assistent_innen oder pflegende Angehörige und es gibt für diese Menschen keine Impfungen.

Eine Entsolidarisierung mit denen, die in der Todesfalle Heim sitzen oder mit den über 80-Jährigen liegt den Kritiker_innen fern. Dennoch zeigen die Statements: Der Kampf um das zweischneidige Schwert der Risikoklassifikation – des Einschlusses in die Risikogruppe mit hoher Impfpriorität – ist entbrannt. Und die Interventionen erinnern auch daran, dass jedes Klassifizieren eine moralische Agenda beinhaltet. Klassifikationen wertschätzen das Leben der einen und blenden andere Leben aus. Klassifikationen gewähren einer Gruppe Zugang zu Ressourcen und verweigern sie einer anderen.

Die Interventionen werden aber auch von jenen geführt, die Zugang zu digitalen Endgeräten und Infrastrukturen haben und sich gekonnt in den sozialen Medien wie Instagram und Facebook bewegen. Von den privilegierten Behinderten, den Edel-Krüppeln, wie der leider im letzten Jahr verstorbene Behinderten-Aktivist Matthias Vernaldi zu sagen pflegte. Und nicht von jenen die in einem reichen Land wie Deutschland in Zonen der Globalen Süden leben. Die Interventionen zeigen, dass Menschen mit Behinderung und ältere Menschen keine homogene, keine passive, schon gar keine immer leidende Gruppe ist. Dennoch frage ich mich auch, welchen Standpunkt die haben, mit denen ich viel zu selten, meist gar nicht spreche, die mir aber einige Male am Tag begegnen. Betty die Pöbel-Prinzessin vom Kottbusser Tor oder Schrei-Stubi, der in einem Zelt am S-Bahn Ring in Neukölln wohnt. Bei ihnen lässt sich nicht sagen, ob die Behinderung, ihre mentalen Angelegenheiten, im Zuge ihres Lebens auf der Straße entstanden sind, oder ob umgekehrt ihre Behinderungen zu einem Leben auf der Straße geführt haben. Betty und Stubi verfügen weder über ein Handy noch werden sie derzeit angeschrieben und zur Impfung eingeladen. Sie fallen durch das deutsche Datenraster – wollen vielleicht durchfallen, gar nicht erfasst werden. Und vielleicht ist es so wie ein Bekannter mit Behinderung, ein Professor für Rehabilitationswissenschaften, mal in einer unserer nächtelangen Diskussion über barrierefreie Apps sagte: Das Problem heißt nicht Digitalisierung, das Problem heißt Armut.

 

About the author

Dr. Ute Kalender is a cultural scientist from Berlin. As a qualitative researcher, she works in a research project on intersexuality at Charité University Medicine and in Digitale Akademie Pflege 4.0–a project on the digitalisation of the care sector.

Dr. Ute Kalender ist Kulturwissenschaftlerin und lebt in Berlin. Als qualitative Forscherin arbeitet sie in einem Forschung zu Intersexualität an der Charité Universitätsmedizin. Und in dem BMBF-Projekt Digitale Akademie Pflege 4.0 – einem Forschungsprojekt zur Digitalisierung des Pflegesektors.

Durante la pandemia i lavoratori e le lavoratrici essenziali sono stati i soggetti più vulnerabili. Questo articolo discute come la sorveglianza introdotta per limitare il COVID-19 molto probabilmente sarà normalizzata nel contesto post-pandemia.

by Laura Carrer and Riccardo Coluccini

 

COVID-19 has shown how essential workers, while fundamental to our societies, are constantly being exploited and marginalized. This is even more true if we consider how smart working has fundamentally changed our perception of public spaces: working from home is a privilege for few people and the public space is something to be monitored. Many essential workers are still forced to commute to their workplaces using public transport and tech companies are taking advantage of the pandemic to introduce anti-COVID solutions that further push for dataficaton of our lives. We see the deployment of video surveillance systems enhanced by algorithms to monitor distance between people on public transport systems and software that can detect a person’s face and temperature and check if they are wearing a face mask. Forced to move in our public spaces, essential workers become guinea pigs for technological experiments that risk further normalizing biometric surveillance.

 

La pandemia di COVID-19 ha creato uno spartiacque nel modo in cui abitiamo il nostro spazio pubblico: mentre alcune fasce privilegiate della popolazione mondiale hanno beneficiato del lavoro da remoto, milioni di persone nel settore della sanità, dell’istruzione, della ristorazione, nell’infrastruttura logistica e di produzione non hanno avuto gli stessi privilegi e spesso hanno lavorato senza adeguati dispositivi di protezione individuale, continuando a recarsi a lavoro quando possibile con i mezzi pubblici. Molto spesso queste categorie di lavoratori essenziali sono anche appartenenti a minoranze e hanno vissuto quindi doppiamente il pesante bilancio della pandemia di COVID-19, pagando un prezzo molto alto.

Se da una parte è sembrata esserci una presa di coscienza nei confronti di queste lavoratrici e lavoratori essenziali—unici a muoversi e continuare a garantire un certo grado di normalità nella nostra vita quotidiana durante la pandemia—dall’altra queste persone rischiano di finire al centro di un nuovo disturbante esperimento tecnologico che potrebbe normalizzare l’utilizzo della sorveglianza all’interno delle nostre città.

I mezzi pubblici sono diventati il campo di test per soluzioni tecnologiche anti-COVID che si basano sulla videosorveglianza: dagli algoritmi per monitorare la distanza tra passeggeri a bordo fino ai software in grado di riconoscere se la persona indossa o meno una mascherina.

L’innovazione tecnologica sembra trainare la risposta alla pandemia in tutto il mondo, non solo sotto forma di app per il tracciamento dei contagi, ma anche e soprattutto sfruttando l’infrastruttura di videosorveglianza già ampiamente diffusa. A Città del Messico, il sistema di videosorveglianza cittadina è stato subito riconvertito per monitorare l’uso delle mascherine. A Mosca, la rete capillare di videocamere (più di 100.000) è stata utilizzata per controllare in tempo reale i cittadini positivi al coronavirus che per varie ragioni si allontanavano da casa. In Messico, il primo sistema di riconoscimento facciale nazionale (nello stato di Coahuila) implementato nel 2019 ha incluso la rilevazione termica ad aprile 2020, un mese dopo l’inizio della pandemia. Un’infrastruttura preesistente rende la possibilità di normalizzazione e controllo dei cittadini da parte dello Stato inevitabilmente più semplice.

Tutto questo avviene spesso a scapito di una corretta valutazione dei rischi per i diritti umani e si sta espandendo in maniera poco trasparente anche sui mezzi pubblici.

Lo scorso maggio, a Parigi, sono state introdotte nelle linee della metropolitana videocamere in grado di monitorare il numero di passeggeri e l’effettivo utilizzo delle mascherine. La stessa tecnologia è stata introdotta in alcuni mercati all’aperto e sui bus della città di Cannes. Tecnologie simili sono state introdotte in India a bordo di bus di lunga distanza e in alcune stazioni ferroviarie.

Il sistema di trasporti dello stato del New Jersey ha annunciato a gennaio 2021 il test di una serie di tecnologie per rilevare la temperatura, individuare l’uso delle mascherine e usare algoritmi di intelligenza artificiale per monitorare il flusso di persone. In Cina, l’azienda di trasporti Shangai Sunwin Bus ha già introdotto quelli che chiama “Healthcare Bus” muniti di tecnologie biometriche.

Le aziende del settore hanno subito sfruttato questo spiraglio per pubblicizzare le proprie tecnologie, come ad esempio l’azienda Hikvision, produttrice mondiale di videocamere. In Italia, l’azienda RECO3.26 che offre il sistema di riconoscimento facciale alla polizia scientifica italiana ha da subito approfittato della situazione offrendo una suite di prodotti anti-COVID: tra questi ci sono il DPI Check, per controllare appunto l’utilizzo della mascherina chirurgica da parte dei soggetti che rientrano nell’area videosorvegliata; Crowd Detection e People Counting per monitorare gli assembramenti; oltre a funzioni per la misurazione in tempo reale della distanza di sicurezza tra le persone videosorvegliate e il rilevamento della temperatura corporea. In Italia, alcune di queste tecnologie sono state subito acquistate da parte dell’Azienda Trasporti Milanesi ATM. E non è chiaro se l’Autorità per la privacy italiana sia stata informata al riguardo.

L’utilizzo di queste tecnologie, oltre ad essere invocato come primaria e più efficiente soluzione per la risoluzione di un problema emergenziale ben più complesso e intricato, è problematico anche sotto un altro punto di vista. L’ente governativo americano National Institute of Standards and Technology (NIST) ha recentemente pubblicato un report di analisi dei software di riconoscimento facciale presenti al momento sul mercato, evidenziando come l’accuratezza di questi ultimi sia molto bassa soprattutto ora che l’utilizzo della mascherina è obbligatorio in molti paesi del mondo. Un prezzo che, visto l’utilizzo della tecnologia biometrica al giorno d’oggi, molte persone—soprattutto appartenenti a categorie già ampiamente discriminate—saranno costrette a pagare caro.

Nella narrazione odierna, tecno-soluzionista e tecno-ottimista, la sorveglianza dei corpi per contrastare un virus che si diffonde velocemente può sembrare l’unica via d’uscita. In molti casi le lavoratrici e i lavoratori essenziali sono già vittime della sorveglianza sul luogo di lavoro, come nel caso delle tecnologie sviluppate da Amazon per monitorare la situazione nei propri magazzini, ma ora questa sorveglianza rischia di espandersi e impossessarsi ulteriormente dei nostri spazi pubblici.  La Commission nationale de l’informatique et des libertés (CNIL), l’autorità garante per la protezione dei dati personali francese, ha già sottolineato che questa tecnologia “presenta il rischio di normalizzare la sensazione della sorveglianza tra i cittadini, di creare un fenomeno di assuefazione e banalizzazione di tecnologie intrusive.” Nel caso della città di Cannes, l’intervento del CNIL ha condotto al blocco dell’impianto di monitoraggio delle mascherine.

La campagna intereuropea Reclaim Your Face sta cercando di mettere in guardia dagli effetti che il controllo demandato alla tecnologia può avere sulle nostre vite e come i nostri spazi pubblici rischiano di essere trasformati in un luogo disumanizzante: la falsa percezione di sicurezza e il chilling effect—la modifica del nostro comportamento quando sappiamo di essere osservati—ne sono gli esempi più che concreti. Avere telecamere puntate addosso in ogni nostro spostamento significa davvero sentirsi più sicuri? E quando questo assunto è puntualmente smentito da studi e fatti di cronaca, quale sarà la successiva soluzione da mettere in campo? Come ci rapporteremo, poi, alla crescente possibilità di non essere più realmente capaci di muoverci liberamente nello spazio pubblico per paura di essere giudicati? Lo sguardo degli algoritmi ci strappa di dosso ogni forma di umanità e ci riduce a vuote categorie e dati digitali.

In questo modo, le persone costrette a spostarsi di casa per recarsi a lavoro diventano cavie per esperimenti tecnologici—normalizzando di fatto la sorveglianza. Lo spazio pubblico viene ridotto a laboratorio e tutti i lavoratori e lavoratrici essenziali rischiano di essere trasformati in dati digitali senza vita.

 

About the authors

Laura Carrer is head of FOI at Transparency International Italy and researcher at the Hermes Center for Transparency and Digital Human Rights. She is also a freelance journalist writing on facial recognition, digital rights and gender issues.

Riccardo Coluccini is one of the Vice Presidents of the Italian NGO Hermes Center for Transparency and Digital Human Rights. He is also a freelance journalist writing about hacking, surveillance and digital rights.

 

 

by Gyan Tripathi and Setu Bandh Upadhyay

“The use of a person’s body or space without his consent to obtain information about him invades an area of personal privacy essential to the maintenance of his human dignity,” observed the Canadian Supreme Court in the matter of Her Majesty, The Queen v. Brandon Roy Dyment, (1988) 2 SCR 417 (1988).

The Government of India released its digital contact tracing application “Aarogya Setu” (the app) on April 2, 2020, following a rampage of similar digital contact tracing (DCT) applications worldwide. Some DCTs, like the one in Singapore, have been largely successful, while others like in Norway had to be pulled owing to assessment by the country’s data protection authority, which raised concerns the application posed a disproportionate threat to user privacy — including by continuously uploading people’s location. Interestingly, Aarogya Setu not only continuously collects people’s location, but it also binds it with other Personally Identifiable Information (PII).

While India has more than 17 other similar apps at various state levels, Aarogya Setu is perhaps the most ambitious digital contact tracing tool in the world. However, the app has been the center of heavy public backlash for posing a grave threat to the constitutionally guaranteed right to privacy.

According to the much-celebrated judgment in K. S. Puttaswamy v. Union of India (the judgment), any restriction on the fundamental right to privacy must pass the three-prong test of legality, which postulates the existence of law; need, defined in terms of a legitimate state aim; and proportionality which ensures a rational nexus between the objects and the means adopted to achieve them; Aarogya Setu fails on all three counts with a lack of any legislative backing, unclear and shifting objectives that the state could have achieved with the deployment of the application, and owing to the huge amount of Personally Identifiable Information (PII) it collects, the near-opaque team of researchers that ‘volunteered’ to build it, the faulty technology used, lack of any legislative backing, absence of clear guidelines on usage and data storage, and lack of any data protection authority oversight.

Following a slew of legal challenges and public outcry, the government released the Aarogya Setu Data Sharing and Storage Protocol (the protocol) which was intended to govern the data-sharing practices of the data collected by the app between governments (Central and State), administrative bodies and medical institutions. However, there was a continued lack to provide an effective mechanism to check the practicality and execution of the protocol. Subsequent responses sought under the Right to Information queries revealed that the data management and sharing protocols as envisaged in the document were never realized. Earlier, various activists and security experts had criticized the government for releasing an incomplete source code while claiming that it was making the application ‘open-source’. Therefore, in the case of Aarogya Setu, there was a systematic breakdown of established laws and reasonable expectations of privacy.

While the judgment also talks about granting more practical ways of control over information by the citizens, and the same is also talked about in Section 11 of the proposed Personal Data Protection Bill, 2019 by way of specific consent, the very architecture of the application does not allow users to exercise control over their data. In an event that a person is tested positive for the novel coronavirus, the application would upload not only their data but also the data of all those with whom they came in contact, based on the interaction they have had in the previous fourteen days.

The 9^th Empowered Group, constituted by the Union Government for ‘Technology & Data Management’, to do away with the discrepancy and/or duplicity of data of the individual who had tested positive, opted for 2-way communication between the application and the Ayushman Bharat dashboard, umbrella scheme for healthcare in India. This has been revealed by the minutes of the meeting obtained under the Right to Information by the Internet Freedom Foundation. The minutes show that the data collected through Aarogya Setu was not only integrated with Ayushman Bharat but was also in communication with Aarogya Rekha, the geo-fencing surveillance employed by governments to enforce quarantine measure and track those who were put under mandatory quarantine, institutional or home.

Fears of a scope creep are already manifesting in the Aarogya Setu development team’s plans for integrating telemedicine, e-pharmacies, and home diagnostics to the app in a separate section called AarogyaSetu Mitr.

On 7 August, the National Health Data Mission (NDHM) released its strategic document detailing the requirement of digitizing all medical registries and thereby creating a National Health Stack (the health stack) based on a June 2018 white-paper by NITI Aayog, policy think tank of the Government of India. The National Health Authority, the nodal agency for Ayushman Bharat, indicated that it would migrate all data collected by the Aarogya Setu application and integrate it with the health stack. Various media reports and occasional public statements have confirmed that the data collected by the Aarogya Setu app would be the starter for the health stack.

It is here that lies a grave point of concern: owing to the faulty data collection mechanism of the application, lack of an express concern for data sharing with Health Stack, and inherent flaws within the health stack, millions will be put at risk of algorithmic or systematic exclusion. There is a massive effort deficit in the competence and effort of public and private providers of health care services in India. It is often observed that healthcare workers are absent for more part of their jobs, and even in cases they are, allied conditions like lack of proper equipment and facilities are a major block. As algorithms and artificial intelligence systems are made commonplace in the healthcare sector, on the pretext of them being more cost-effective and accurate, and equal importance should be given to lack of records, already stretched health infrastructure, outdated research, overburdened medical institutions, and personnel. The subsequent use of data collected, and the use of automated tools for decision making might also exacerbate the existing problems such as underrepresentation of minorities, women, and non-cis males.

There is a lack of any specific legislation concerning the disclosure of medical records in India. However, under the regulations notified by the Indian Medical Council, every medical professional is obligated to maintain physician-patient confidentiality. But this obligation does not extend to other entities, third parties, and data processors responsible for processing patient data, either under the mandate of a state body or a body corporate.

Presently, India has an outdated Information Technology (Reasonable Security Practices and Procedures and Sensitive Personal Data or Information) Rules of 2011 in force, but the rules fail to provide a comprehensive framework based on other internationally accepted practices. On matters of health information security, India currently has a draft Digital Information Security in Healthcare Act which provides for the establishment of eHealth Authorities and Health Information Exchanges at central as well as state-level

Computational systems are mostly data-driven and are ultimately based on the brute force of complex statistical calculations. Since the technical architecture of the proposed National Health Stack is unknown at moment, it further adds to the uncertainty on how the data shared would be used. These raises, as Prof. Hildebrandt points out, the question of to what extent such design should support legal requirements, thus contributing to interactions that fit the system of checks and balances typical for a society that demands that all of its human and institutional agents be “under the rule of law”. The issue of consent is very inherent to the rule of law, as in the digital social contract it ensures the individualistic right to self-determination.

The need for an informed consent overlaps with the ‘purpose limitation’ and ‘collection limitation’ principles, part of the core Fair Information Principles (FIPs), as part of the Guidelines governing the protection of privacy and transborder flows of personal data, by OECD, which came out first in 1980. The principles stipulate that “There should be limits to the collection of personal data and any such data should be obtained by lawful and fair means and, where appropriate, with the knowledge or consent of the data subject”, all while ensuring that “the purposes for which personal data are collected should be specified not later than at the time of data collection and the subsequent use limited to the fulfillment of those purposes or such others as are not incompatible with those purposes and as are specified on each occasion of change of purpose”.

Privacy, like other abstract and subjective freedoms, cannot be reduced to the fulfillment of certain conditions, nor it can be given a delineated shape. However, we must endeavor to give users at least some level of control so that they can better understand and balance privacy considerations against countervailing interests.

 

About the authors

Gyan Tripathi is a student of law at Symbiosis International (Deemed University), Pune; and a Research Associate with Scriboard [Advocates and Legal Consultants]. He particularly loves to research the intersection of technology and laws and its impact on society. He tweets at @tripathi_gy.

Setu Bandh Upadhyay is a lawyer and policy analyst working on Technology Policy issues in the global south. Along with a law degree, he holds a graduate Public Policy degree from the Central European University. He has a diverse set of experiences working with different stakeholders in India, East Africa, and Europe. Currently, he is also serving as the Country Expert for India for the Varieties of Democracy (V-Dem project). He tweets at @setubupadhyay.

Stefania Milan and Emiliano Treré, co-founders of the Big Data from the South Research Initiative, have contributed a piece entitled ‘Latin American Visions for a Digital New Deal: Towards Buen Vivir with Data‘ to the essay collection ‘A Digital New Deal. Visions of Justice in a Post-Covid World‘, edited by the Just Net Coalition and IT for Change (India). Their piece is accompanied by the beautiful illustration of Mansi Thakkar.

Read the project description, and download the full collection as pdf from this link.

The Just Net Coalition and IT for Change invite you to explore and engage with our Digital New Deal essay series, a thoughtfully curated set of long reads authored by passionate and committed scholars, activists and visionaries from around the world. In these essays, authors reflect on the current global Covid moment and its challenges from various standpoints and how the digital fits into this equation. From activists steeped in long standing battles against corporate capture of our resources and pushing for food sovereignty, labor rights, climate justice, equitable development, to scholars pondering the new questions of the internet, data, AI and the state of our public sphere, to practitioners seeking to address the disenfranchisement of countless communities and people from digital systems, the Digital New Deal captures the current anxieties, challenges, hopes and visions for the future. Beyond calling out what ails the world, our authors set for themselves in these poignant, informative, and radical pieces, the difficult challenge of outlining progressive solutions…to future gaze, imagine new possibilities and to reclaim the digital for justice.