Surveillance and the ‘New Normal’ of Covid-19: Public Health, Data, and Justice

Curated on Posted on by Stefaan Verhulst

Report by the Social Science Research Council: “The Covid-19 pandemic has dramatically altered the way nations around the world use technology in public health. As the virus spread globally, some nations responded by closing businesses, shuttering schools, limiting gatherings, and banning travel. Many also deployed varied technological tools and systems to track virus exposure, monitor outbreaks, and aggregate hospital data.

Some regions are still grappling with crisis-level conditions, and others are struggling to navigate the complexities of vaccine rollouts. Amid the upheavals, communities are adjusting to a new normal, in which mask-wearing has become as commonplace as seatbelt use and digital temperature checks are a routine part of entering public buildings.

Even as the frenzy of emergency responses begins to subside, the emergent forms of surveillance that have accompanied this new normal persist. As a consequence, societies face new questions about how to manage the monitoring systems created in response to the virus, what processes are required in order to immunize populations, and what new norms the systems have generated. How they answer these questions will have long-term impacts on civil liberties, governance, and the role of technology in society. The systems implemented amid the public health emergency could jeopardize individual freedoms and exacerbate harms to already vulnerable groups, particularly if they are adapted to operate as permanent social management tools. At the same time, growing public awareness about the impact of public health technologies could also provide a catalyst for strengthening democratic engagement and demonstrating the urgency of improving governance systems. As the world transitions in and out of pandemic crisis modes, there is an opportunity to think broadly about strengthening public health systems, policymaking, and the underlying structure of our social compacts.

The stakes are high: an enduring lesson from history is that moments of crisis often recast the roles of governments and the rights of individuals. Moments of crisis often recast the roles of governments and the rights of individuals.In this moment of flux, the Social Science Research Council calls on policymakers, technologists, data scientists, health experts, academics, activists, and communities around the world to assess the implications of this transformation and seize opportunities for positive social change. The Council seeks to facilitate a shift from reactive modes of crisis response to more strategic forms of deliberation among varied stakeholders. As such, it has convened discussions and directed research in order to better understand the intersection of governance and technologically enabled surveillance in conditions of public health emergencies. Through these activities, the Council aims to provide analysis that can help foster societies that are more resilient, democratic, and inclusive and can, therefore, better withstand future crises.

With these goals in mind, the Council convened a cross-disciplinary, multinational group of experts in the summer of 2020 to survey the landscape of human rights and social justice with regard to technologically driven public health practices. The resulting group—the Public Health, Surveillance, and Human Rights (PHSHR) Network—raised a broad range of questions about governance, social inequalities, data protection, medical systems, and community norms: What rules should govern the sharing of personal health data? How should the efficacy of public health interventions be weighed against the emergence and expansion of new forms of surveillance? How much control should multinational corporations have in designing and implementing nations’ public health technology systems? These are among the questions that pushed members to think beyond traditional professional, geographic, and intellectual boundaries….(More)”.

Balancing Privacy With Data Sharing for the Public Good

Curated on Posted on by Stefaan Verhulst

David Deming at the New York Times: “Governments and technology companies are increasingly collecting vast amounts of personal data, prompting new laws, myriad investigations and calls for stricter regulation to protect individual privacy.

Yet despite these issues, economics tells us that society needs more data sharing rather than less, because the benefits of publicly available data often outweigh the costs. Public access to sensitive health records sped up the development of lifesaving medical treatments like the messenger-RNA coronavirus vaccines produced by Moderna and Pfizer. Better economic data could vastly improve policy responses to the next crisis.

Data increasingly powers innovation, and it needs to be used for the public good, while individual privacy is protected. This is new and unfamiliar terrain for policymaking, and it requires a careful approach.

The pandemic has brought the increasing dominance of big, data-gobbling tech companies into sharp focus. From online retail to home entertainment, digitally savvy businesses are collecting data and deploying it to anticipate product demand and set prices, lowering costs and outwitting more traditional competitors.

Data provides a record of what has already happened, but its main value comes from improving predictions. Companies like Amazon choose products and prices based on what you — and others like you — bought in the past. Your data improves their decision-making, boosting corporate profits.

Private companies also depend on public data to power their businesses. Redfin and Zillow disrupted the real estate industry thanks to access to public property databases. Investment banks and consulting firms make economic forecasts and sell insights to clients using unemployment and earnings data collected by the Department of Labor. By 2013, one study estimated, public data contributed at least $3 trillion per year to seven sectors of the economy worldwide.

The buzzy refrain of the digital age is that “data is the new oil,” but this metaphor is inaccurate. Data is indeed the fuel of the information economy, but it is more like solar energy than oil — a renewable resource that can benefit everyone at once, without being diminished….(More)”.

The Power of Virtual Communities

Curated on Posted on by Stefaan Verhulst

Report by The GovLab: “When India went into lockdown in response to the COVID-19 pandemic, restrictions on movement affected people’s access to medicine, food and other supplies that they relied upon. HIV/AIDS sufferers feared traveling to clinics and labs to pick up their medication. Needing help, many turned to HumanKind Global, a new network of thousands of volunteers who coordinate aid through a Facebook Group and WhatsApp (also owned by Facebook).

Mahita Nagaraj, 39, a self-employed digital marketing professional and single mother based in Bangalore, created the group in March 2020. In just four weeks, HumanKind Global volunteers delivered lifesaving HIV medicines to more than 170 people across India. It has since grown to more than 50,000 members. Answering more than 25,000 requests for help, these volunteers have coordinated blood donations, delivered life-saving medication and provided people stranded at home with enough food to eat.

HumanKind Global is an online group, a form of human organization that is expanding at a remarkable scale and speed. Online groups exist for many reasons. Some offer lifesaving support while others enable people—whether they life next door or across an ocean—to trade articles, jokes, photographs, insults, ideas, advice, information, and sometimes misinformation. The space in which contemporary online groups are active is at once global and local, intimate and vast. A post can reach two million people, or spark a conversation between just two. Governed by their own members and the policies of the platforms on which they are hosted, these groups have diverse rules that seek to create a space in which their members can connect supported by feelings of belonging, intimacy and trust.

Online groups like HumanKind Global can be found on many platforms. There are discussion groups on Reddit, artist colonies on LEGO Mindstorms, player groups on gaming platforms like Twitch, or parenting groups in which members go online to organize real-life meetings through MeetUp. But in this report we study Facebook Groups, specifically, as one category of online group….(More)”. (See also: https://virtual-communities.thegovlab.org/)

As Jakarta floods again, humanitarian chatbots on social media support community-led disaster response

Curated on Posted on by Stefaan Verhulst

Blog by Petabencana: “On February 20th, #banjir and #JakartaBanjir were the highest trending topics on Twitter Indonesia, as the capital city was inundated for the third major time this year, following particularly heavy rainfall from Friday night (19/2/2021) to Saturday morning (20/02/2021). As Jakarta residents turned to social media to share updates about the flood, they were greeted by “Disaster Bot” – a novel AI-assisted chatbot that monitors social media for posts about disasters and automatically invites users to submit more detailed disaster reports. These crowd-sourced reports are used to map disasters in real-time, on a free and open source website, PetaBencana.id.

As flooding blocked major thoroughfares and toll roads, disrupted commuter lines, and cut off electricity to over 60,000 homes, residents continued to share updates about the flood situation in order to stay alert and make timely decisions about safety and response. Hundreds of residents submitted flood reports to PetaBencana.id, alerting each other about water levels, broken infrastructures and road accessibility. The Jakarta Emergency Management Agency also updated the map with official information about flood affected  areas, and monitored the map to respond to resident needs. PetaBencana.id experienced a 2000% in activity in under 12 hours as residents actively checked the map to understand the flooding situation, avoid flooded areas, and make decisions about safety and response. 

Residents share updates about flood-affected road access through the open source information sharing platform, PetaBencana.id. Thousands of residents used the map to navigate safely as heavy rainfall inundated the city for the third major time this year.

As flooding incidents continue to occur with increasing intensity across the country, community-led information sharing is once again proving its significance in supporting response and planning at multiple scales. …(More)”.

My Data, My Choice? – German Patient Organizations’ Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study

Curated on Posted on by Stefaan Verhulst

Paper by Carolin Martina Rauter, Sabine Wöhlke & Silke Schicktanz: “Personalized medicine (PM) operates with biological data to optimize therapy or prevention and to achieve cost reduction. Associated data may consist of large variations of informational subtypes e.g. genetic characteristics and their epigenetic modifications, biomarkers or even individual lifestyle factors. Present innovations in the field of information technology have already enabled the procession of increasingly large amounts of such data (‘volume’) from various sources (‘variety’) and varying quality in terms of data accuracy (‘veracity’) to facilitate the generation and analyzation of messy data sets within a short and highly efficient time period (‘velocity’) to provide insights into previously unknown connections and correlations between different items (‘value’). As such developments are characteristics of Big Data approaches, Big Data itself has become an important catchphrase that is closely linked to the emerging foundations and approaches of PM. However, as ethical concerns have been pointed out by experts in the debate already, moral concerns by stakeholders such as patient organizations (POs) need to be reflected in this context as well. We used an empirical-ethical approach including a website-analysis and 27 telephone-interviews for gaining in-depth insight into German POs’ perspectives on PM and Big Data. Our results show that not all POs are stakeholders in the same way. Comparing the perspectives and political engagement of the minority of POs that is currently actively involved in research around PM and Big Data-driven research led to four stakeholder sub-classifications: ‘mediators’ support research projects through facilitating researcher’s access to the patient community while simultaneously selecting projects they preferably support while ‘cooperators’ tend to contribute more directly to research projects by providing and implemeting patient perspectives. ‘Financers’ provide financial resources. ‘Independents’ keep control over their collected samples and associated patient-related information with a strong interest in making autonomous decisions about its scientific use. A more detailed terminology for the involvement of POs as stakeholders facilitates the adressing of their aims and goals. Based on our results, the ‘independents’ subgroup is a promising candidate for future collaborations in scientific research. Additionally, we identified gaps in PO’s knowledge about PM and Big Data. Based on these findings, approaches can be developed to increase data and statistical literacy. This way, the full potential of stakeholder involvement of POs can be made accessible in discourses around PM and Big Data….(More)”.

No Democracy Without Comprehension: Political Unintelligibility as A Democratic Problem

Curated on Posted on by Stefaan Verhulst

Paper by Daniel Innerarity: “Democracy is possible because of an increase in the complexity of society, but that same complexity seems to threaten democracy. There is a clear imbalance between people’s actual competence and the expectation that citizens in a democratic society will be politically competent. It is not only that society has become more complex but that democratization itself increases the degree of social complexity. This unintelligibility can be overcome through the acquisition of some political competence—such as improving individual knowledge, diverse strategies for simplification or recourse to the experts—that partially reduce this imbalance. My hypothesis is that despite the attraction of de-democratizing procedures, the best solutions are those that are most democratic: strengthening the cooperation and the institutional organization of collective intelligence. The purpose of this article is not to solve all the problems I touch on, but rather to examine how they are related and to provide a general framework for the problem of de-democratization through misunderstanding….(More)”.

A New Way to Inoculate People Against Misinformation

Curated on Posted on by Stefaan Verhulst

Article by Jon Roozenbeek, Melisa Basol, and Sander van der Linden: “From setting mobile phone towers on fire to refusing critical vaccinations, we know the proliferation of misinformation online can have massive, real-world consequences.

For those who want to avert those consequences, it makes sense to try and correct misinformation. But as we now know, misinformation—both intentional and unintentional—is difficult to fight once it’s out in the digital wild. The pace at which unverified (and often false) information travels makes any attempt to catch up to, retrieve, and correct it an ambitious endeavour. We also know that viral information tends to stick, that repeated misinformation is more likely to be judged as true, and that people often continue to believe falsehoods even after they have been debunked.

Instead of fighting misinformation after it’s already spread, some researchers have shifted their strategy: they’re trying to prevent it from going viral in the first place, an approach known as “prebunking.” Prebunking attempts to explain how people can resist persuasion by misinformation. Grounded in inoculation theory, the approach uses the analogy of biological immunization. Just as weakened exposure to a pathogen triggers antibody production, inoculation theory posits that pre-emptively exposing people to a weakened persuasive argument builds people’s resistance against future manipulation.

But while inoculation is a promising approach, it has its limitations. Traditional inoculation messages are issue-specific, and have often remained confined to the particular context that you want to inoculate people against. For example, an inoculation message might forewarn people that false information is circulating encouraging people to drink bleach as a cure for the coronavirus. Although that may help stop bleach drinking, this messaging doesn’t pre-empt misinformation about other fake cures. As a result, prebunking approaches haven’t easily adapted to the changing misinformation landscape, making them difficult to scale.

However, our research suggests that there may be another way to inoculate people that preserves the benefits of prebunking: it may be possible to build resistance against misinformation in general, rather than fighting it one piece at a time….(More)”.

Reddit Is America’s Unofficial Unemployment Hotline

Curated on Posted on by Stefaan Verhulst

Ella Koeze at The New York Times: “In early December, Alex Branch’s car broke down. A 23-year-old former arcade employee in southern Virginia, Mr. Branch had been receiving unemployment benefits since he was laid off in March, and figured he would have no problem paying for the repairs. But when he checked his bank account, he was troubled to find that the payments had stopped.

He had failed to get useful information from his state’s unemployment office before, so he turned to the one place he figured he could get an explanation: Reddit.

“I’m very confused and have no idea what to do,” Mr. Branch wrote on r/Unemployment, a Reddit forum whose popularity has skyrocketed during the pandemic.

The next day, another user commented on Mr. Branch’s post, using a common abbreviation for Extended Benefits, an emergency unemployment program. “Were you on EB? If so, EB was cut off Nov 21.”

Mr. Branch hadn’t realized he had been on Extended Benefits, which kicked in after he exhausted 26 weeks of regular unemployment plus 13 additional weeks granted in the March pandemic stimulus bill. Virginia stopped payments because the state’s unemployment rate had fallen under 5 percent, triggering an end to federal funding for the Extended Benefits program.

“I didn’t know about it,” he said in an interview. “That’s the biggest frustration that I had about it was the fact that I never received the email that it was going to be shut off.”

For many of the millions of Americans like Mr. Branch who lost jobs because of the coronavirus, the stress of being unemployed in a pandemic has been compounded by the difficulty of navigating disorganized and often antiquated state and federal unemployment systems. Information from overwhelmed state offices and websites is often confusing, and reaching an official who can answer questions nearly impossible….

Post after post on r/Unemployment conveys bureaucratic problems with endless variations: how to file a claim depending on your circumstances, what to do if you made a mistake on your claim, what different statuses on your claim might mean, how to navigate confusing and glitch-prone online portals and even how to speak to an actual person to get issues resolved….

Many people come to r/Unemployment to offer answers, not just find them.

Albert Peers, who had been working in a call center in San Diego until the pandemic, spends time every day trying to answer questions about California’s system. He lives alone and can’t easily return to work because he has a lowered immune system. After first visiting the site when he encountered a hitch in his own unemployment benefits, Mr. Peers, 56, was shocked by the number of people who had no idea what to do.

The thought that someone might go hungry or miss rent because they were simply stymied by the system was unacceptable to him. “At that point I just made a decision,” he said. “You know what, like a couple hours every day, because I just can’t turn away.”…(More)”.

Inside the ‘Wikipedia of Maps,’ Tensions Grow Over Corporate Influence

Curated on Posted on by Stefaan Verhulst

Corey Dickinson at Bloomberg: “What do Lyft, Facebook, the International Red Cross, the U.N., the government of Nepal and Pokémon Go have in common? They all use the same source of geospatial data: OpenStreetMap, a free, open-source online mapping service akin to Google Maps or Apple Maps. But unlike those corporate-owned mapping platforms, OSM is built on a network of mostly volunteer contributors. Researchers have described it as the “Wikipedia for maps.”

Since it launched in 2004, OpenStreetMap has become an essential part of the world’s technology infrastructure. Hundreds of millions of monthly users interact with services derived from its data, from ridehailing apps, to social media geotagging on Snapchat and Instagram, to humanitarian relief operations in the wake of natural disasters. 

But recently the map has been changing, due the growing impact of private sector companies that rely on it. In a 2019 paper published in the ISPRS International Journal of Geo-Information, a cross-institutional team of researchers traced how Facebook, Apple, Microsoft and other companies have gained prominence as editors of the map. Their priorities, the researchers say, are driving significant change to what is being mapped compared to the past. 

“OpenStreetMap’s data is crowdsourced, which has always made spectators to the project a bit wary about the quality of the data,” says Dipto Sarkar, a professor of geoscience at Carleton University in Ottawa, and one of the paper’s co-authors. “As the data becomes more valuable and is used for an ever-increasing list of projects, the integrity of the information has to be almost perfect. These companies need to make sure there’s a good map of the places they want to expand in, and nobody else is offering that, so they’ve decided to fill it in themselves.”…(More)”.

Critical Perspectives on Open Development

Curated on Posted on by Stefaan Verhulst

Book edited by Arul Chib, Caitlin M. Bentley, and Matthew L. Smith: “Over the last ten years, “open” innovations—the sharing of information and communications resources without access restrictions or cost—have emerged within international development. But do these innovations empower poor and marginalized populations? This book examines whether, for whom, and under what circumstances the free, networked, public sharing of information and communication resources contribute (or not) toward a process of positive social transformation. The contributors offer cross-cutting theoretical frameworks and empirical analyses that cover a broad range of applications, emphasizing the underlying aspects of open innovations that are shared across contexts and domains.

The book first outlines theoretical frameworks that span knowledge stewardship, trust, situated learning, identity, participation, and power decentralization. It then investigates these frameworks across a range of institutional and country contexts, considering each in terms of the key emancipatory principles and structural impediments it seeks to address. Taken together, the chapters offer an empirically tested theoretical direction for the field….(More)”.