Stefaan Verhulst

Andrew Young and Stefaan Verhulst at The Conversation: “…Without question, the increased use of data poses unique risks for and responsibilities to children. While practitioners may have well-intended purposes to leverage data for and about children, the data systems used are often designed with (consenting) adults in mind without a focus on the unique needs and vulnerabilities of children. This can lead to the collection of inaccurate and unreliable data as well as the inappropriate and potentially harmful use of data for and about children….

Research undertaken in the context of the RD4C initiative uncovered the following trends and realities. These issues make clear why we need a dedicated data responsibility approach for children.

• Today’s children are the first generation growing up at a time of rapid datafication where almost all aspects of their lives, both on and off-line, are turned into data points. An entire generation of young people is being datafied – often starting even before birth. Every year the average child will have more data collected about them in their lifetime than would a similar child born any year prior. The potential uses of such large volumes of data and the impact on children’s lives are unpredictable, and could potentially be used against them.
• Children typically do not have full agency to make decisions about their participation in programs or services which may generate and record personal data. Children may also lack the understanding to assess a decision’s purported risks and benefits. Privacy terms and conditions are often barely understood by educated adults, let alone children. As a result, there is a higher duty of care for children’s data.
• Disaggregating data according to socio-demographic characteristics can improve service delivery and assist with policy development. However, it also creates risks for group privacy. Children can be identified, exposing them to possible harms. Disaggregated data for groups such as child-headed households and children experiencing gender-based violence can put vulnerable communities and children at risk. Data about children’s location itself can be risky, especially if they have some additional vulnerability that could expose them to harm.
• Mishandling data can cause children to lose trust in institutions that deliver essential services including vaccines, medicine, and nutrition supplies. For organizations dealing with child well-being, these retreats can have severe consequences. Distrust can cause families and children to refuse health, education, child protection and other public services. Such privacy protective behavior can impact children throughout the course of their lifetime, and potentially exacerbate existing inequities and vulnerabilities.
• As volumes of collected and stored data increase, obligations and protections traditionally put in place for children may be difficult or impossible to uphold. The interests of children are not always prioritized when organizations define their legitimate interest to access or share personal information of children. The immediate benefit of a service provided does not always justify the risk or harm that might be caused by it in the future. Data analysis may be undertaken by people who do not have expertise in the area of child rights, as opposed to traditional research where practitioners are specifically educated in child subject research. Similarly, service providers collecting children’s data are not always specially trained to handle it, as international standards recommend.
• Recent events around the world reveal the promise and pitfalls of algorithmic decision-making. While it can expedite certain processes, algorithms and their inferences can possess biases that can have adverse effects on people, for example those seeking medical care and attempting to secure jobs. The danger posed by algorithmic bias is especially pronounced for children and other vulnerable populations. These groups often lack the awareness or resources necessary to respond to instances of bias or to rectify any misconceptions or inaccuracies in their data.
• Many of the children served by child welfare organizations have suffered trauma. Whether physical, social, emotional in nature, repeatedly making children register for services or provide confidential personal information can amount to revictimization – re-exposing them to traumas or instigating unwarranted feelings of shame and guilt.

These trends and realities make clear the need for new approaches for maximizing the value of data to improve children’s lives, while mitigating the risks posed by our increasingly datafied society….(More)”.

Living Repository: “This document is part of a call for action to build a responsible infrastructure for data-driven pandemic response. 

It serves as a living repository for data collaboratives seeking to address the spread of COVID-19 and its secondary effects. 

> You can find ongoing data collaborative projects here

> Requests for data and expertise that might lead to data collaboratives can be found here.

> Data competitions, challenges, and calls for proposals, which can lead to useful tools to combat COVID-19, can be found here.

The repository aims to include projects that show a commitment to privacy protection, data responsibility, and overall user well-being. 

It will be updated regularly as we receive projects and proposals or otherwise become aware of them. 

See full Living Repository here.

Susan Landau at Lawfare: “…Some government officials believe that the location information that phones can provide will be useful in the current crisis. After all, if cellphone location information can be used to track terrorists and discover who robbed a bank, perhaps it can be used to determine whether you rubbed shoulders yesterday with someone who today was diagnosed as having COVID-19, the respiratory disease that the novel coronavirus causes. But such thinking ignores the reality of how phone-tracking technology works.

Let’s look at the details of what we can glean from cellphone location information. Cell towers track which phones are in their locale—but that is a very rough measure, useful perhaps for tracking bank robbers, but not for the six-foot proximity one wants in order to determine who might have been infected by the coronavirus.

Finer precision comes from GPS signals, but these can only work outside. That means the location information supplied by your phone—if your phone and that of another person are both on—can tell you if you both went into the same subway stop around the same time. But it won’t tell you whether you rode the same subway car. And the location information from your phone isn’t fully precise. So not only can’t it reveal if, for example, you were in the same aisle in the supermarket as the ill person, but sometimes it will make errors about whether you made it into the store, as opposed to just sitting on a bench outside. What’s more, many people won’t have the location information available because GPS drains the battery, so they’ll shut it off when they’re not using it. Their phones don’t have the location information—and neither do the providers, at least not at the granularity to determine coronavirus exposure.

GPS is not the only way that cellphones can collect location information. Various other ways exist, including through the WiFi network to which a phone is connected. But while two individuals using the same WiFi network are likely to be close together inside a building, the WiFi data would typically not be able to determine whether they were in that important six-foot proximity range.

Other devices can also get within that range, including Bluetooth beacons. These are used within stores, seeking to determine precisely what people are—and aren’t—buying; they track peoples’ locations indoors within inches. But like WiFi, they’re not ubiquitous, so their ability to track exposure will be limited.

If the apps lead to the government’s dogging people’s whereabouts at work, school, in the supermarket and at church, will people still be willing to download the tracking apps that get them get discounts when they’re passing the beer aisle? China follows this kind of surveillance model, but such a surveillance-state solution is highly unlikely to be acceptable in the United States. Yet anything less is unlikely to pinpoint individuals exposed to the virus.

South Korea took a different route. In precisely tracking coronavirus exposure, the country used additional digital records, including documentation of medical and pharmacy visits, history of credit card transactions, and CCTV videos, to determine where potentially exposed people had been—then followed up with interviews not just of infected people but also of their acquaintances, to determine where they had traveled.

Validating such records is labor intensive. And for the United States, it may not be the best use of resources at this time. There’s an even more critical reason that the Korean solution won’t work for the U.S.: South Korea was able to test exposed people. The U.S. can’t do this. Currently the country has a critical shortage of test kits; patients who are not sufficiently ill as to be hospitalized are not being tested. The shortage of test kits is sufficiently acute that in New York City, the current epicenter of the pandemic, the rule is, “unless you are hospitalized and a diagnosis will impact your care, you will not be tested.” With this in mind, moving to the South Korean model of tracking potentially exposed individuals won’t change the advice from federal and state governments that everyone should engage in social distancing—but employing such tracking would divert government resources and thus be counterproductive.

Currently, phone tracking in the United States is not efficacious. It cannot be unless all people are required to carry such location-tracking devices at all times; have location tracking on; and other forms of information tracking, including much wider use of CCTV cameras, Bluetooth beacons, and the like, are also in use. There are societies like this. But so far, even in the current crisis, no one is seriously contemplating the U.S. heading in that direction….(More)”.

Kelly Servick at Science: “…At its simplest, digital contact tracing might work like this: Phones log their own locations; when the owner of a phone tests positive for COVID-19, a record of their recent movements is shared with health officials; owners of any other phones that recently came close to that phone get notified of their risk of infection and are advised to self-isolate. But designers of a tracking system will have to work out key details: how to determine the proximity among phones and the health status of users, where that information gets stored, who sees it, and in what format.

Digital contact tracing systems are already running in several countries, but details are scarce and privacy concerns abound. Protests greeted Israeli Prime Minister Benjamin Netanyahu’s rollout this week of a surveillance program that uses the country’s domestic security agency to track the locations of people potentially infected with the virus. South Korea has released detailed information on infected individuals—including their recent movements—viewable through multiple private apps that send alerts to users in their vicinity. “They’re essentially texting people, saying, ‘Hey, there’s been a 60-year-old woman who’s positive for COVID. Click this for more information about her path,’” says Anne Liu, a global health expert at Columbia University. She warns that the South Korean approach risks unmasking and stigmatizing infected people and the businesses they frequent.

But digital tracking is probably “identifying more contacts than you would with traditional methods,” Liu says. A contact-tracing app might not have much impact in a city where a high volume of coronavirus cases and extensive community transmission has already shuttered businesses and forced citizens inside, she adds. But it could be powerful in areas, such as in sub-Saharan Africa, that are at an earlier stage of the outbreak, and where isolating potential cases could avert the need to shut down all schools and businesses. “If you can package this type of information in a way that protects individual privacy as best you can, it can be something positive,” she says.

Navigating privacy laws

In countries with strict data privacy laws, one option for collecting data is to ask telecommunications and other tech companies to share anonymous, aggregated information they’ve already gathered. Laws in the United States and the European Union are very specific about how app and device users must consent to the use of their data—and how much information companies must disclose about how those data will be used, stored, and shared. Working within those constraints, mobile carriers in Germany and Italy have started to share cellphone location data with health officials in an aggregated, anonymized format. Even though individual users aren’t identified, the data could reveal general trends about where and when people are congregating and risk spreading infection.

Google and Facebook are both in discussions with the U.S. government about sharing anonymized location data, The Washington Post reported this week. U.S. companies have to deal with a patchwork of state and federal privacy regulations, says Melissa Krasnow, a privacy and data security partner at VLP Law Group. App and devicemakers could face user lawsuits for sharing data in a way that wasn’t originally specified in their terms of service—unless federal or local officials pass legislation that would free them from liability. “Now you’ve got a global pandemic, so you would think that [you] would be able to use this information for the global good, but you can’t,” Krasnow says. “There’s expectations about privacy.”

Another option is to start fresh with a coronavirus-specific app that asks users to voluntarily share their location and health data. For example, a basic symptom-checking app could do more than just keeping people who don’t need urgent care out of overstretched emergency rooms, says Samuel Scarpino, an epidemiologist at Northeastern University. Health researchers could use also use location data from the app to estimate the size of an outbreak. “That could be done, I think, without risking being evil,” he says.

For Scarpino, the calculus changes if governments want to track the movements of a specific person who has coronavirus relative to the paths of other people, as China and South Korea have apparently done. That kind of tracking “could easily swing towards a privacy violation that isn’t justified by the potential public health benefit,” he says….(More)”.

Jaron Lanier and E. Glen Weyl at Foreign Affairs: “The spread of the novel coronavirus and the resulting COVID-19 pandemic have provided a powerful test of social and governance systems. Neither of the world’s two leading powers, China and the United States, has been particularly distinguished in responding. In China, an initial bout of political denial allowed the virus to spread for weeks, first domestically and then globally, before a set of forceful measures proved reasonably effective. (The Chinese government also should have been better prepared, given that viruses have jumped from animal hosts to humans within its territory on multiple occasions in the past.) The United States underwent its own bout of political denial before adopting social-distancing policies; even now, its lack of investment in public health leaves it ill-equipped for this sort of emergency.

The response of the bureaucratic and often technophobic European Union may prove even worse: Italy, although far from the epicenter of the outbreak, has four times the per capita rate of cases as China does, and even famously orderly Germany is already at half China’s rate. Nations in other parts of the world, such as information-manipulating Iran, provide worse examples yet.

Focusing on the countries that have done worst, however, may be less useful at this point than considering which country has so far done best: Taiwan. Despite being treated by the World Health Organization as part of China, and despite having done far broader testing than the United States (meaning the true rate of infection is far less hidden), Taiwan has only one-fifth the rate of known cases in the United States and less than one-tenth the rate in widely praised Singapore. Infections could yet spike again, especially with the global spread making visitors from around the world vectors of the virus. Yet the story of Taiwan’s initial success is worth sharing not just because of its lessons for containing the present pandemic but also because of its broader lessons about navigating pressing challenges around technology and democracy.

Taiwan’s success has rested on a fusion of technology, activism, and civic participation. A small but technologically cutting-edge democracy, living in the shadow of the superpower across the strait, Taiwan has in recent years developed one of the world’s most vibrant political cultures by making technology work to democracy’s advantage rather than detriment. This culture of civic technology has proved to be the country’s strongest immune response to the new coronavirus….(More)”.

Alfred Ng at CNET: “Your posts on social media have been harvested for advertising. They’ve been taken to build up a massive facial recognition database. Now that same data could be used by companies and governments to help maintain quarantines during the coronavirus outbreak. 

Ghost Data, a research group in Italy and the US, collected more than half a million Instagram posts in March, targeting regions in Italy where residents were supposed to be on lockdown. It provided those images and videos to LogoGrab, an image recognition company that can automatically identify people and places. The company found at least 33,120 people violated Italy’s quarantine orders. 

Andrea Stroppa, the founder of Ghost Data, said his group has offered its research to the Italian government. Stroppa doesn’t consider the social media scraping to be a privacy concern because researchers anonymized the data by removing profile and specific location data before analyzing it. He also has public health on his mind. 

“In our view, privacy is very important. It’s a fundamental human right,” Stroppa said. “However, it’s important to give our support to help the government and the authorities. Hundreds of people are dying every day.”…(More)” .

Rebecca Robbins at Statnews: “It’s emerging as one of the more promising — and potentially controversial — ideas to slow the spread of the coronavirus: collecting smartphone data to track where people have gone and who they’ve crossed paths with.

The White House has discussed the notion, and several companies are reportedly in talks with the Trump administration to share aggregated user data. Researchers in the U.K. are working on one such app, and a team led by researchers at the Massachusetts Institute of Technology is building another, with an eye toward protecting user privacy. China and South Korea developed their own smartphone surveillance systems to try to clamp down on their own outbreaks, though their approaches likely wouldn’t be palatable in countries with greater expectations of privacy.

Then there’s Facebook, which collects data from its users around the world who opt in to sharing their location when using its smartphone app. Facebook does not share this information with governments. But in recent weeks, the social media giant has been sharing these data — in aggregated and anonymized form — with academic and nonprofit researchers analyzing the spread of the coronavirus.

Among the universities where Covid-19 researchers are harnessing Facebook’s data: the Harvard T.H. Chan School of Public Health, National Tsing Hua University in Taiwan, University of Pavia in Italy, and the London School of Hygiene and Tropical Medicine.

The idea is to study where people move and how often they encounter each other, in the hope of better understanding the virus’ spread — and which places are likely to soon see a spike in cases….(More)”.

Edda Humprecht at the Democratic Audit: “The massive spread of online disinformation, understood as content intentionally produced to mislead others, has been widely discussed in the context of the UK Brexit referendum and the US general election in 2016. However, in many other countries online disinformation seems to be less prevalent. It seems certain countries are better equipped to face the problems of the digital era, demonstrating a resilience to manipulation attempts. In other words, citizens in these countries are better able to adapt to overcome challenges such as the massive spread of online disinformation and their exposure to it. So, do structural conditions render countries more or less resilient towards online disinformation?

As a first step to answering this question, in new research with Frank Esser and Peter Van Aelst, we identified the structural conditions that are theoretically linked to resilience to online disinformation, which relate to different political, media and economic environments. To test these expectations, we then identified quantifiable indicators for these theoretical conditions, which allowed us to measure their significance for 18 Western democracies. A cluster analysis then yielded three country groups: one group with high resilience to online disinformation (including the Northern European countries) and two country groups with low resilience (including Southern European countries and the US).

Conditions for resilience: political, media and economic environments

In polarised political environments, citizens are confronted with different deviating representations of reality and therefore it becomes increasingly difficult for them to distinguish between false and correct information. Thus, societal polarisation is likely to decrease resilience to online disinformation. Moreover, research has shown that both populism and partisan disinformation share a binary Manichaeanworldview, comprising anti-elitism, mistrust of expert knowledge and a belief in conspiracy theories. As a consequence of these combined influences, citizens can obtain inaccurate perceptions of reality. Thus, in environments with high levels of populist communication, online users are exposed to more disinformation.

Another condition that has been linked to resilience to online disinformation in previous research is trust in news media. Previous research has shown that in environments in which distrust in news media is higher, people are less likely to be exposed to a variety of sources of political information and to critically evaluate those. In this vein,the level of knowledge that people gain is likely to play an important role when confronted with online disinformation. Research has shown that in countries with wide-reaching public service media, citizens’ knowledge about public affairs is higher compared to countries with marginalised public service media. Therefore, it can be assumed that environments with weak public broadcasting services (PBS) are less resilient to online disinformation….

Looking at the economic environment, false social media content is often produced in pursuit of advertising revenue, as was the case with the Macedonian ‘fake news factories’ during the 2016 US presidential election. It is especially appealing for producers to publish this kind of content if the potential readership is large. Thus, large-size advertising markets with a high number of potential users are less resistant to disinformation than smaller-size markets….(More)”.

Disinformation is particularly prevalent on social media and in countries with very many social media users, it is easier for rumour-spreaders to build partisan follower networks. Moreover, it has been found that a media diet mainly consisting of news from social media limits political learning and leads to less knowledge of public affairs compared to other media source. From this, societies with a high rate of social media users are more vulnerable to online disinformation spreading rapidly than other societies…(More)”.

Yuval Noah Harari at the Financial Times: “Humankind is now facing a global crisis. Perhaps the biggest crisis of our generation. The decisions people and governments take in the next few weeks will probably shape the world for years to come. They will shape not just our healthcare systems but also our economy, politics and culture. We must act quickly and decisively. We should also take into account the long-term consequences of our actions.

When choosing between alternatives, we should ask ourselves not only how to overcome the immediate threat, but also what kind of world we will inhabit once the storm passes. Yes, the storm will pass, humankind will survive, most of us will still be alive — but we will inhabit a different world.  Many short-term emergency measures will become a fixture of life. That is the nature of emergencies. They fast-forward historical processes.

Decisions that in normal times could take years of deliberation are passed in a matter of hours. Immature and even dangerous technologies are pressed into service, because the risks of doing nothing are bigger. Entire countries serve as guinea-pigs in large-scale social experiments. What happens when everybody works from home and communicates only at a distance? What happens when entire schools and universities go online? In normal times, governments, businesses and educational boards would never agree to conduct such experiments. But these aren’t normal times. 

In this time of crisis, we face two particularly important choices. The first is between totalitarian surveillance and citizen empowerment. The second is between nationalist isolation and global solidarity. 

Under-the-skin surveillance

In order to stop the epidemic, entire populations need to comply with certain guidelines. There are two main ways of achieving this. One method is for the government to monitor people, and punish those who break the rules. Today, for the first time in human history, technology makes it possible to monitor everyone all the time. Fifty years ago, the KGB couldn’t follow 240m Soviet citizens 24 hours a day, nor could the KGB hope to effectively process all the information gathered. The KGB relied on human agents and analysts, and it just couldn’t place a human agent to follow every citizen. But now governments can rely on ubiquitous sensors and powerful algorithms instead of flesh-and-blood spooks. 

In their battle against the coronavirus epidemic several governments have already deployed the new surveillance tools. The most notable case is China. By closely monitoring people’s smartphones, making use of hundreds of millions of face-recognising cameras, and obliging people to check and report their body temperature and medical condition, the Chinese authorities can not only quickly identify suspected coronavirus carriers, but also track their movements and identify anyone they came into contact with. A range of mobile apps warn citizens about their proximity to infected patients…

If I could track my own medical condition 24 hours a day, I would learn not only whether I have become a health hazard to other people, but also which habits contribute to my health. And if I could access and analyse reliable statistics on the spread of coronavirus, I would be able to judge whether the government is telling me the truth and whether it is adopting the right policies to combat the epidemic. Whenever people talk about surveillance, remember that the same surveillance technology can usually be used not only by governments to monitor individuals — but also by individuals to monitor governments. 

The coronavirus epidemic is thus a major test of citizenship….(More)”.

Niam Yaraghi at Brookings: “The COVID-19 pandemic highlights the crucial importance of health information technology and data interoperability. The pandemic has shattered our common beliefs about the type and scope of health information exchange. It has shown us that the definition of health data should no longer be limited to medical data of patients and instead should encompass a much wider variety of data types from individuals’ online and offline activity. Moreover, the pandemic has proven that healthcare is not local. In an interconnected world, with more individuals traveling long distances than ever before, it is naïve to look at regions in isolation from each other and try to manage public health independently. To efficiently manage a pandemic like this, the scope of health information exchange efforts should not be limited to small geographical regions and instead should be done at least nationally, if not internationally.

HEALTH DATA SHOULD GO BEYOND MEDICAL RECORDS

A wide variety of factors affect one’s overall well-being, a very small fraction of which could be quantified via medical records. We tend to ignore this fact, and try to explain and predict a patient’s condition only based on medical data. Previously, we did not have the technology and knowledge to collect huge amounts of non-medical data and analyze it for healthcare purposes. Now, privacy concerns and outdated regulations have exacerbated the situation and has led to a fragmented data ecosystem. Interoperability, even among healthcare providers, remains a major challenge where exchange and analysis of non-medical data for healthcare purposes almost never happens….(More)”.