Stefaan Verhulst
Gian Volpicelli at Wired: “Something was wrong with Malaysia’s internet. It was March 13, and the more Simon Angus looked at the data, the more he suspected that the country might be in the midst of a coronavirus crisis.
Angus is an academic at Monash University and the cofounder of Kaspr Datahaus, a Melbourne-based company that analyses the quality of global internet connection to glean economic and social insights. The company monitors millions of internet-connected devices to gauge internet speed across the world. For them, a sudden deterioration in a country’s internet speed means that something is putting the network under strain. In recent weeks Kaspr’s theory is that the “something” is linked to the Covid-19 epidemics – as people who are working from home, or quarantining, or staying home as a precaution start using the internet more intensely than usual.
“For people who are in lockdown, or in panic mode, or in self-isolation, the internet has become a fundamentally important part of their information source, and of their consumption of entertainment,” Angus says.
To put it bluntly, when millions more turn on Netflix, scroll through TikTok, start a Zoom call, play Fortnite, or simply scroll idly through Twitter, that has repercussions on the quality of the country’s internet. (That is why EU commissioner Thierry Breton asked Netflix to restrict high-definition streaming until the emergency is over.)
Now, Angus’ scanning had detected that Malaysia’s internet had become over five percent slower in the March 12 to 13 timespan—worse even than in locked-down Italy. Officially, though, Malaysia had only 129 confirmed coronavirus cases—a relatively low number, although it had been inching up for a week.
What was happening, though, was that the population was cottoning on to the government’s sloppy handling of the pandemic. In late February, in what would turn out to be a monumental blunder, authorities had allowed a religious mass gathering to go ahead in Kuala Lumpur. Once Covid-19 cases linked to the event started to emerge, the government scrambled to find all the attendees, but got the numbers wrong—first saying that only 5,000 people at the gathering were Malaysia residents, then updating the figure to 10,000 and then 14,500. With the mess laid bare, many Malaysians seemed to have decided to stay at home out of sheer self-preservation…(More)”.
Victoria Heath and Brigitte Vézina at Creative Commons: “Over the weekend, news emerged that upset even the most ardent skeptics of open access. Under the headline, “Trump vs Berlin” the German newspaper Welt am Sonntag reported that President Trump offered $1 billion USD to the German biopharmaceutical company CureVac to secure their COVID-19 vaccine “only for the United States.”
In response, Jens Spahn, the German health minister said such a deal was completely “off the table” and Peter Altmaier, the German economic minister replied, “Germany is not for sale.” Open science advocates were especially infuriated. Professor Lorraine Leeson of Trinity College Dublin, for example, tweeted, “This is NOT the time for this kind of behavior—it flies in the face of the #OpenScience work that is helping us respond meaningfully right now. This is the time for solidarity, not exclusivity.” The White House and CureVac have since denied the report.
Today, we find ourselves at a pivotal moment in history—we must cooperate effectively to respond to an unprecedented global health emergency. The mantra, “when we share, everyone wins” applies now more than ever. With this in mind, we felt it imperative to underscore the importance of open access, specifically open science, in times of crisis.
Why open access matters, especially during a global health emergency
One of the most important components of maintaining global health, specifically in the face of urgent threats, is the creation and dissemination of reliable, up-to-date scientific information to the public, government officials, humanitarian and health workers, as well as scientists.
Several scientific research funders like the Gates Foundation, the Hewlett Foundation, and the Wellcome Trust have long-standing open access policies and some have now called for increased efforts to share COVID-19 related research rapidly and openly to curb the outbreak. By licensing material under a CC BY-NC-SA license, the World Health Organization (WHO) is adopting a more conservative approach to open access that falls short of what the scientific community urgently needs in order to access and build upon critical information….(More)”.
Emily Benson at the Bertelsmann Foundation: “In bucolic China, a child has braved cold temperatures for some fresh outdoors air. Overhead, a drone hovers. Its loudspeaker, a haunting combination of human direction in the machine age, chides him for being outdoors. “Hey kid! We’re in unusual times… The coronavirus is very serious… run!!” it barks. “Staying at home is contributing to society.”
The ferocious spread of COVID-19 in 2020 has revealed stark policy differences among governments. The type of actions and degrees of severity with which governments have responded varies widely, but one pressing issue the crisis raises is how COVID-19 will affect civil liberties in the digital age.
The Chinese Approach
Images of riot gear with heat-sensing cameras and temperature gun checks in metro stations have been plastered in the news since the beginning of 2020, when the Chinese government undertook drastic measures to contain the spread of COVID-19. The government quickly set about enacting strict restraints on society that dictated where people went and what they could do.
In China, Alipay, an Alibaba subsidiary and equivalent of Elon Musk’s PayPal, joined forces with Ant Financial to launch Alipay Health Code, a software for smart phones. It indicates individuals’ health in green, yellow, and red, ultimately determining where citizens can and cannot go. The government has since mandated that citizens use this software, despite inaccuracies of temperature-reading technology that has led to the confinement of otherwise healthy individuals. It also remains unclear how this data will be used going forward–whether it will be stored indefinitely or used to augment civilians’ social scores. As the New York Times noted, this Chinese gathering of data would be akin to the Centers for Disease Control (CDC) using data from Amazon, Facebook, and Google to track citizens and then share that data with law enforcement–something that no longer seems so far-fetched.
An Evolving EU
The European Union is home to what is arguably the most progressive privacy regime in the world. In May 2018, the EU implemented the General Data Protection Regulation (GDPR). While processing personal data is generally permitted in cases in which individuals have provided explicit consent to the use of their data, several exceptions to these mining prohibitions are proving problematic in the time of COVID-19. For example, GDPR Article 9 provides an exception for public interest, permitting the processing of personal data when it is necessary for reasons of substantial public interest, and on the basis of Union or Member State law which must be proportionate to the aim pursued…(More)”.
Paper by Jeanette Hofmann: “Although the relationship between digitalisation and democracy is subject of growing public attention, the nature of this relationship is rarely addressed in a systematic manner. The common understanding is that digital media are the driver of the political change we are facing today. This paper argues against such a causal approach und proposes a co-evolutionary perspective instead. Inspired by Benedict Anderson’s “Imagined Communities” and recent research on mediatisation, it introduces the concept of mediated democracy. This concept reflects the simple idea that representative democracy requires technical mediation, and that the rise of modern democracy and of communication media are therefore closely intertwined. Hence, mediated democracy denotes a research perspective, not a type of democracy. It explores the changing interplay of democratic organisation and communication media as a contingent constellation, which could have evolved differently. Specific forms of communication media emerge in tandem with larger societal formations and mutually enable each other. Following this argument, the current constellation reflects a transformation of representative democracy and the spread of digital media. The latter is interpreted as a “training ground” for experimenting with new forms of democratic agency….(More)”.
Jill Lepore at The New Yorker: “People have been counting people for thousands of years. Count everyone, beginning with babies who have teeth, decreed census-takers in China in the first millennium B.C.E., under the Zhou dynasty. “Take ye the sum of all the congregation of the children of Israel, after their families, by the house of their fathers, with the number of their names, every male by their polls,” God commands Moses in the Book of Numbers, describing a census, taken around 1500 B.C.E., that counted only men “twenty years old and upward, all that are able to go forth to war in Israel”—that is, potential conscripts.
Ancient rulers took censuses to measure and gather their strength: to muster armies and levy taxes. Who got counted depended on the purpose of the census. In the United States, which counts “the whole number of persons in each state,” the chief purpose of the census is to apportion representation in Congress. In 2018, Secretary of Commerce Wilbur Ross sought to add a question to the 2020 U.S. census that would have read, “Is this person a citizen of the United States?” Ross is a banker who specialized in bankruptcy before joining the Trump Administration; earlier, he had handled cases involving the insolvency of Donald Trump’s casinos. The Census Bureau objected to the question Ross proposed. Eighteen states, the District of Columbia, fifteen cities and counties, the United Conference of Mayors, and a coalition of non-governmental organizations filed a lawsuit, alleging that the question violated the Constitution.
Last year, United States District Court Judge Jesse Furman, in an opinion for the Southern District, found Ross’s attempt to add the citizenship question to be not only unlawful, and quite possibly unconstitutional, but also, given the way Ross went about trying to get it added to the census, an abuse of power. Furman wrote, “To conclude otherwise and let Secretary Ross’s decision stand would undermine the proposition—central to the rule of law—that ours is a ‘government of laws, and not of men.’ ” There is, therefore, no citizenship question on the 2020 census.
All this, though, may be by the bye, because the census, like most other institutions of democratic government, is under threat. Google and Facebook, after all, know a lot more about you, and about the population of the United States, or any other state, than does the U.S. Census Bureau or any national census agency. This year may be the last time that a census is taken door by door, form by form, or even click by click….
In the ancient world, rulers counted and collected information about people in order to make use of them, to extract their labor or their property. Facebook works the same way. “It was the great achievement of eighteenth- and nineteenth-century census-takers to break that nexus and persuade people—the public on one side and their colleagues in government on the other—that states could collect data on their citizens without using it against them,” Whitby writes. It is among the tragedies of the past century that this trust has been betrayed. But it will be the error of the next if people agree to be counted by unregulated corporations, rather than by democratic governments….(More)”.
WEF Report: “…The genomic nature of rare disease suggests an opportunity. By bringing together genomic, phenotypic, and clinical data at a global scale, individual countries and hospitals carrying out genomics research could come up with more answers both to diagnose currently undiagnosed or misdiagnosed people with rare disease and to develop treatments.
With an estimated 15.2 million individuals expected to have clinical genomic testing for a rare condition within the next five years, it is time to evaluate the economic and societal benefits of developing a system that can share this data without compromising privacy.
The answer is a technical solution called a “federated data system”. This is a data superstructure that can aggregate remote data sets for querying while still allowing for localized, data control and security. The groupings are independent, but interoperable. They have their own governance and the information inside them is protected, but they offer evidence – conclusions gathered from the data – that can be used to feed a much larger, global data engine.
The result is a robust and well-annotated dataset that in the case of rare diseases can be added to and then used by different countries to enable global and country-specific solutions to diagnosis, treatment, patient trial recruitment and management of rare diseases. Developing federated data systems is one of the many investments countries are currently considering. Yet since its implementation can be costly (about half a million US dollars) is it the right solution?…(More)”.
Paper by Gianluca Sgueo: “What will European Union (EU) decision-making look like in the next decade and beyond? Is technological progress promoting more transparent, inclusive and participatory decision-making at EU level?
Technology has dramatically changed both the number and quality of connections between citizens and public administrations. With technological progress, citizens have gained improved access to public authorities through new digital communication channels. Innovative, tech-based, approaches to policy-making have become the subject of a growing debate between academics and politicians. Theoretical approaches such as ‘CrowdLaw’, ‘Policy-Making 3.0’, ‘liquid’, ‘do-it- yourself’ or ‘technical’ democracy and ‘democratic innovations’ share the positive outlook towards technology; and technology is seen as the medium through which policies can be ‘co-created’ by decision-makers and stakeholders. Co-creation is mutually beneficial. Decision-makers gain legitimacy by incorporating the skills, knowledge and expertise of citizens, who in turn have the opportunity to shape new policies according to their needs and expectations.
EU institutions are at the forefront of experimentation with technologically innovative approaches to make decision-making more transparent and accessible to stakeholders. Efforts in modernising EU participatory channels through technology have evolved over time: from redressing criticism on democratic deficits, through fostering digital interactions with stakeholders, up to current attempts at designing policy-making in a friendly and participative manner.
While technological innovation holds the promise of making EU policy-making even more participatory, it is not without challenges. To begin with, technology is resource consuming. There are legal challenges associated with both over- and under-regulation of the use of technology in policy-making. Furthermore, technological innovation raises ethical concerns. It may increase inequality, for instance, or infringe personal privacy… (More)“.
CALL FOR ACTION: “The spread of COVID-19 is a human tragedy and a worldwide crisis. The social and economic costs are huge, and they are contributing to a global slowdown. Despite the amount of data collected daily, we have not been able to leverage them to accelerate our understanding and action to counter COVID-19. As a result we have entered a global state of profound uncertainty and anxiety.
The current pandemic has not only shown vulnerabilities in our public health systems but has also made visible our failure to re-use data between the public and private sectors — what we call data collaboratives — to inform decision makers how to fight dynamic threats like the novel Coronavirus.
We have known for years that the re-use of aggregated and anonymized data — including from telecommunications, social media, and satellite feeds — can improve traditional models for tracking disease propagation. Telecommunications data has, for instance, been re-used to support the response to Ebola in Africa (Orange) and swine flu in Mexico (Telefónica). Social media data has been re-used to understand public perceptions around Zika in Brazil (Facebook). Satellite data has been used to track seasonal measles in Niger using nighttime lights. Geospatial data has similarly supported malaria surveillance and eradication efforts in Sub-Saharan Africa. In general, many infectious diseases have been monitored using mobile phones and mobility.
The potential and realized contributions of these and other data collaboratives reveal that the supply of and demand for data and data expertise are widely dispersed. They are spread across government, the private sector, and civil society and often poorly matched.
Much data needed by researchers is never made accessible to those who could productively put it to use while much data that is released is never used in a systematic and sustainable way during and post crisis.
This failure results in tremendous inefficiencies and costly delays in how we respond. It means lost opportunities to save lives and a persistent lack of preparation for future threats….(More)”. SIGN AND JOIN HERE.
About: “The Coronavirus Tech Handbook provides a space for technologists, specialists, civic organisations and public & private institutions to collaborate on a rapid and sophisticated response to the coronavirus outbreak. It is an active and evolving resource with thousands of expert contributors.
In less than two weeks it has grown to cover areas including:
- Detailed guidance for doctors and nurses,
- Advice and tools for educators adjusting to remote teaching,
- Community of open-source ventilator designers
- Comprehensive data and models for forecasting the spread of the virus.
Coronavirus Tech Handbook’s goal is to create a rapidly evolving open source technical knowledge base that will help all institutions across civil society and the public sector collaborate to fight the outbreak.
Coronavirus Tech Handbook is not a place for the public to get advice, but a place for specialists to collaborate and make sure the best solutions are quickly shared and deployed….(More)”.
Article by Evan Nicole Brown: “… There’s currently no cure for COVID-19, but scientists are working on drugs that could help slow its spread. Fortunately, citizens can get involved in the process.
Foldit is an online video game that challenges players to fold various proteins into shapes where they are stable. Generally, folding proteins allows scientists (and citizens) to design new proteins from scratch, but in the case of coronavirus, Foldit players are trying to design the drugs to combat it. “Coronavirus has a ‘spike’ protein that it uses to recognize human cells,” says Brian Koepnick, a biochemist and researcher with the University of Washington’s Institute for Protein Design who has been using Foldit for protein research for six years. “Foldit players are designing new protein drugs that can bind to the COVID spike and block this recognition, [which could] potentially stop the virus from infecting more cells in an individual who has already been exposed to the virus.”
“In Foldit, you change the shape of a protein model to optimize your score. This score is actually a sophisticated calculation of the fold’s potential energy,” says Koepnick, adding that professional researchers use an identical score function in their work. “The coronavirus puzzles are set up such that high-scoring models have a better chance of actually binding to the target spike protein.” Ultimately, high-scoring solutions are analyzed by researchers and considered for real-world use….(More)”.