Ex ante knowledge for infectious disease outbreaks : Introducing the organizational network governance approach

Curated on Posted on by Stefaan Verhulst

Chapter by Jörg Raab et al: “The core question addressed is to what extent ex ante knowledge can be made available from a network governance perspective to deal with a crisis such as an infectious disease outbreak. Such outbreaks are often characterized by a lack of information and knowledge, changing and unforeseen conditions as well as a myriad of organizations becoming involved on the one hand but also organizations which do not become adequately involved. We introduce the organizational network governance approach as an exploratory approach to produce useful ex ante information for limiting the transmission of a virus and its impact. We illustrate the usefulness of our approach introducing two fictitious but realistic outbreak scenarios: the West Nile Virus (WNV), which is transmitted via mosquitos and the outbreak of a New Asian Coronavirus (NAC) which is characterized by human to human transmission. Both viruses can lead to serious illnesses or even death as well as large health care and economic costs.

Our organizational network governance approach turns out to be effective in generating information to produce recommendations for strengthening the organizational context in order to limit the transmission of a virus and its impact. We also suggest how the organizational network governance approach could be further developed…(More)”.

Statement of the EDPB Chair on the processing of personal data in the context of the COVID-19 outbreak

Curated on Posted on by Stefaan Verhulst

European Data Protection Board: “Governments, public and private organisations throughout Europe are taking measures to contain and mitigate COVID-19. This can involve the processing of different types of personal data.  

Andrea Jelinek, Chair of the European Data Protection Board (EDPB), said: “Data protection rules (such as GDPR) do not hinder measures taken in the fight against the coronavirus pandemic. However, I would like to underline that, even in these exceptional times, the data controller must ensure the protection of the personal data of the data subjects. Therefore, a number of considerations should be taken into account to guarantee the lawful processing of personal data.”

The GDPR is a broad legislation and also provides for the rules to apply to the processing of personal data in a context such as the one relating to COVID-19. Indeed, the GDPR provides for the legal grounds to enable the employers and the competent public health authorities to process personal data in the context of epidemics, without the need to obtain the consent of the data subject. This applies for instance when the processing of personal data is necessary for the employers for reasons of public interest in the area of public health or to protect vital interests (Art. 6 and 9 of the GDPR) or to comply with another legal obligation.

For the processing of electronic communication data, such as mobile location data, additional rules apply. The national laws implementing the ePrivacy Directive provide for the principle that the location data can only be used by the operator when they are made anonymous, or with the consent of the individuals. The public authorities should first aim for the processing of location data in an anonymous way (i.e. processing data aggregated in a way that it cannot be reversed to personal data). This could enable to generate reports on the concentration of mobile devices at a certain location (“cartography”).  

When it is not possible to only process anonymous data, Art. 15 of the ePrivacy Directive enables the member states to introduce legislative measures pursuing national security and public security *. This emergency legislation is possible under the condition that it constitutes a necessary, appropriate and proportionate measure within a democratic society. If such measures are introduced, a Member State is obliged to put in place adequate safeguards, such as granting individuals the right to judicial remedy….(More)”.

CARE Principles for Indigenous Data Governance

Curated on Posted on by Stefaan Verhulst

The Global Indigenous Data Alliance: “The current movement toward open data and open science does not fully engage with Indigenous Peoples rights and interests. Existing principles within the open data movement (e.g. FAIR: findable, accessible, interoperable, reusable) primarily focus on characteristics of data that will facilitate increased data sharing among entities while ignoring power differentials and historical contexts. The emphasis on greater data sharing alone creates a tension for Indigenous Peoples who are also asserting greater control over the application and use of Indigenous data and Indigenous Knowledge for collective benefit.

This includes the right to create value from Indigenous data in ways that are grounded in Indigenous worldviews and realise opportunities within the knowledge economy. The CARE Principles for Indigenous Data Governance are people and purpose-oriented, reflecting the crucial role of data in advancing Indigenous innovation and self-determination. These principles complement the existing FAIR principles encouraging open and other data movements to consider both people and purpose in their advocacy and pursuits….(More)”.

Building Blocks and New Frontiers for Open Government

Curated on Posted on by Stefaan Verhulst

Paper by Aichida Ul-Aflaha, Mary McNeil and Saki Kumagai: “This paper summarizes the World Bank’s knowledge on open, participatory, and responsive governance. It offers a rethinking and broadening of the term “open government” in light of the World Bank Group’s Strategic Framework for Mainstreaming Citizen Engagement in World Bank Group Operations and World Development Report 2017: Governance and the Law. The building blocks of open government are documented based on experience and growing trends. The paper also tries to identify new frontiers and presents a summary of action steps for advancing the open, participatory, and responsive governance agenda within the World Bank….(More)”.

Personal privacy matters during a pandemic — but less than it might at other times

Curated on Posted on by Stefaan Verhulst

Nicole Wetsman at the Verge: “…The balance between protecting individual privacy and collecting information that is critical to the public good changes over the course of a disease’s spread. The amount of data public health officials need to collect and disclose changes as well. Right now, the COVID-19 pandemic is accelerating, and there is still a lot doctors and scientists don’t know about the disease. Collecting detailed health information is, therefore, more useful and important. That could change as the outbreak progresses, Lee says.

For example, as the virus starts to circulate in the community, it might not be as important to know exactly where a sick person has been. If the virus is everywhere already, that information won’t have as much additional benefit to the community. “It depends a lot on the maturity of an epidemic,” she says.

Digital tracking information is ubiquitous today, and that can make data collection easier. In Singapore, where there’s extensive surveillance, publicly available data details where people with confirmed cases of COVID-19 are and have been. The Iranian government built an app for people to check their symptoms that also included a geo-tracking feature. When deciding to use those types of tools, Lee says, the same public health principles should still apply.

“Should a public health official know where a person has gone, should that be public information — it’s not different. It’s a lot easier to do that now, but it doesn’t make it any more right or less right,” she says. “Tracking where people go and who they interact with is something public health officials have been doing for centuries. It’s just easier with digital information.”

In addition, just because personal information about a person and their health is important to a public health official, it doesn’t mean that information is important for the general public. It’s why, despite questioning from reporters, public health officials only gave out a limited amount of information on the people who had the first few cases of COVID-19 in the US…

Health officials worry about the stigmatization of individuals or communities affected by diseases, which is why they aim to disclose only necessary information to the public. Anti-Asian racism in the US and other countries around the world spiked with the outbreak because the novel coronavirus originated in China. People who were on cruise ships with positive cases reported fielding angry phone calls from strangers when they returned home, and residents of New Rochelle, New York, which is the first containment zone in the US, said that they’re worried about their hometown being forever associated with the virus.

“This kind of group-level harm is concerning,” Lee says. “That’s why we worry about group identity privacy, as well. I’m nervous and sad to see that starting to poke its head out.”

People can’t expect the same level of personal health privacy during public health emergencies involving infectious diseases as they can in other elements of their health. But the actions public health officials can take, like collecting information, aren’t designed to limit privacy, Fairchild says. “It’s to protect the broader population. The principle we embrace is the principle of reciprocity. We recognize that our liberty is limited, but we are doing that for others.”…(More)”.

Coronavirus: seven ways collective intelligence is tackling the pandemic

Curated on Posted on by Stefaan Verhulst

Article by Kathy Peach: “Tackling the emergence of a new global pandemic is a complex task. But collective intelligence is now being used around the world by communities and governments to respond.

At its simplest, collective intelligence is the enhanced capacity created when distributed groups of people work together, often with the help of technology, to mobilise more information, ideas and insights to solve a problem.

Advances in digital technologies have transformed what can be achieved through collective intelligence in recent years – connecting more of us, augmenting human intelligence with machine intelligence, and helping us to generate new insights from novel sources of data. It is particularly suited to addressing fast-evolving, complex global problems such as disease outbreaks.

Here are seven ways it is tackling the coronavirus pandemic:

1. Predicting and modelling outbreaks

On the December 31, 2019, health monitoring platform Blue Dot alerted its clients to the outbreak of a flu-like virus in Wuhan, China – nine days before the World Health Organization (WHO) released a statement about it. It then correctly predicted that the virus would jump from Wuhan to Bangkok, Seoul, Taipei and Tokyo.

Blue Dot combines existing data sets to create new insights. Natural language processing, the AI methods that understand and translate human-generated text, and machine learning techniques that learn from large volumes of data, sift through reports of disease outbreaks in animals, news reports in 65 languages, and airline passenger information. It supplements the machine-generated model with human intelligence, drawing on diverse expertise from epidemiologists to veterinarians and ecologists to ensure that its conclusions are valid.

2. Citizen science

The BBC carried out a citizen science project in 2018, which involved members of the public in generating new scientific data about how infections spread. People downloaded an app that monitored their GPS position every hour, and asked them to report who they had encountered or had contact with that day….(More).

COVID-19 response and data protection law in the EU and US

Curated on Posted on by Stefaan Verhulst

Article by Cathy Cosgrove: “Managing the COVID-19 outbreak and stopping its spread is now a global challenge. In addition to the significant health and medical responses underway around the world, governments and public health officials are focused on how to monitor, understand and prevent the spread of the virus. Data protection and privacy laws, including the EU General Data Protection Regulation and various U.S. laws, are informing these responses.

One major response to limiting the spread of infection is contact tracing, which is the practice of identifying and monitoring anyone who may have come into contact with an infected person. Employers and educational institutions are also imposing travel restrictions, instituting self-quarantine policies, limiting visitors, and considering whether to require medical examinations. These responses necessarily involve obtaining and potentially sharing personal information, including data about an individual’s health, travel, personal contacts, and employment. For example, in the U.S., the Centers for Disease Control and Prevention has asked airlines for the name, date of birth, address, phone number and email address for passengers on certain flights. 

As IAPP Editorial Director Jedidiah Bracy, CIPP, explored in his piece on balancing personal privacy with public interest last week, this collection and processing of personal data is creating substantial discussion about what data protection limitations may be required or appropriate. Even China — which is using AI and big data to manage the outbreak — has issued guidance recognizing the need to limit the collection of data and its use during this public health crisis….(More)”.

Social tipping dynamics for stabilizing Earth’s climate by 2050

Curated on Posted on by Stefaan Verhulst

Paper by Ilona M. Otto et al: “…In this paper, we examine a number of potential “social tipping elements” (STEs) for decarbonization that represent specific subdomains of the planetary social-economic system. Tipping of these subsystems could be triggered by “social tipping interventions” (STIs) that could contribute to rapid transition of the world system into a state of net zero anthropogenic greenhouse gas emissions. The results reported in this study are based on an online expert survey, an expert workshop, and an extensive literature review (SI Appendix).

Our results complement the existing shared socioeconomic pathways (SSPs) that are used alongside the representative concentration pathways (RCPs) to analyze the feedbacks between climate change and socioeconomic factors, such as world population growth, economic development, and technological progress. Our results could be useful for exploring possible transformative pathways leading to scenarios that reach net zero emissions by 2050.

…Various types of tipping processes can be differentiated in the literature. Many authors refer to critical thresholds , a notion closely related to the metaphor of a “butterfly effect”. Other processes related to tipping dynamics include metamorphosis, where a rapid loss of structures of one sort occurs simultaneously with the development of new structures, as well as cascades driven by positive feedbacks in processes occurring simultaneously at smaller scales.

The social tipping dynamics of interest for this study are typically manifested as spreading processes in complex social networks of behaviors, opinions, knowledge, technologies, and social norms, including spreading processes of structural change and reorganization. These spreading processes resemble contagious dynamics observed in epidemiology that spread through social networks. Once triggered, such processes can be irreversible and difficult to stop. Similar contagious dynamics have been observed in human behavior, for example in assaultive violence, participation in social movements, or health-related behaviors and traits, such as smoking or obesity..(More)”.

Data-driven models of governance across borders: Datafication from the local to the global

Curated on Posted on by Stefaan Verhulst

Payal Arora and Hallam Stevens at First Monday: “This special issue looks closely at contemporary data systems in diverse global contexts and through this set of papers, highlights the struggles we face as we negotiate efficiency and innovation with universal human rights and social inclusion. The studies presented in these essays are situated in diverse models of policy-making, governance, and/or activism across borders. Attention to big data governance in western contexts has tended to highlight how data increases state and corporate surveillance of citizens, affecting rights to privacy. By moving beyond Euro-American borders — to places such as Africa, India, China, and Singapore — we show here how data regimes are motivated and understood on very different terms….(More)”.

Freedom in the World 2020 – A Leaderless Struggle for Democracy

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Report by Freedom House: “Democracy and pluralism are under assault. Dictators are toiling to stamp out the last vestiges of domestic dissent and spread their harmful influence to new corners of the world. At the same time, many freely elected leaders are dramatically narrowing their concerns to a blinkered interpretation of the national interest. In fact, such leaders—including the chief executives of the United States and India, the world’s two largest democracies—are increasingly willing to break down institutional safeguards and disregard the rights of critics and minorities as they pursue their populist agendas. As a result of these and other trends, Freedom House found that 2019 was the 14th consecutive year of decline in global freedom.

The gap between setbacks and gains widened compared with 2018, as individuals in 64 countries experienced deterioration in their political rights and civil liberties while those in just 37 experienced improvements. The negative pattern affected all regime types, but the impact was most visible near the top and the bottom of the scale. More than half of the countries that were rated Free or Not Free in 2009 have suffered a net decline in the past decade…The unchecked brutality of autocratic regimes and the ethical decay of democratic powers are combining to make the world increasingly hostile to fresh demands for better governance. A striking number of new citizen protest movements have emerged over the past year, reflecting the inexhaustible and universal desire for fundamental rights. However, these movements have in many cases confronted deeply entrenched interests that are able to endure considerable pressure and are willing to use deadly force to maintain power…(More)”.