Data Protection under SARS-CoV-2

GDPR Hub: “The sudden outbreak of cases of COVID-19-afflictions (“Corona-Virus”), which was declared a pandemic by the WHO affects data protection in various ways. Different data protection authorities published guidelines for employers and other parties involved in the processing of data related to the Corona-Virus (read more below).

The Corona-Virus has also given cause to the use of different technologies based on data collection and other data processing activities by the EU/EEA member states and private companies. These processing activities mostly focus on preventing and slowing the further spreading of the Corona-Virus and on monitoring the citizens’ abidance with governmental measures such as quarantine. Some of them are based on anonymous or anonymized data (like for statistics or movement patterns), but some proposals also revolved around personalized tracking.

At the moment, it is not easy to figure out, which processing activities are actually supposed to be conducted and which are only rumors. This page will therefore be adapted once certain processing activities have been confirmed. For now, this article does not assess the lawfulness of particular processing activities, but rather outlines the general conditions for data processing in connection with the Corona-Virus.

It must be noted that several activities – such as monitoring, if citizens comply with quarantine and stay indoors by watching at mobile phone locations – can be done without having to use personal data under Article 4(1) GDPR, if all necessary information can be derived from anonymised data. The GDPR does not apply to activities that only rely on anonymised data….(More)”.

Collective Intelligence at EU Level – Social and Democratic Dimensions

Paper by Nora Milotay and Gianluca Sgueo: “Humans are among the many living species capable of collaborative and imaginative thinking. While it is widely agreed among scholars that this capacity has contributed to making humans the dominant species, other crucial questions remain open to debate. Is it possible to encourage large groups of people to engage in collective thinking? Is it possible to coordinate citizens to find solutions to address global challenges? Some scholars claim that large groups of independent, motivated, and well-informed people can, collectively, make better decisions than isolated individuals can – what is known as ‘collective intelligence.’

The social dimension of collective intelligence mainly relates to social aspects of the economy and of innovation. It shows that a holistic approach to innovation – one that includes not only technological but also social aspects – can greatly contribute to the EU’s goal of promoting a just transition for everyone to a sustainable and green economy in the digital age. The EU has been taking concrete action to promote social innovation by supporting the development of its theory and practice. Mainly through funding programmes, it helps to seek new types of partners and build new capacity – and thus shape the future of local and national innovations aimed at societal needs.

The democratic dimension suggests that the power of the collective can be leveraged so as to improve public decision-making systems. Supported by technology, policy-makers can harness the ‘civic surplus’ of citizens – thus providing smarter solutions to regulatory challenges. This is particularly relevant at EU level in view of the planned Conference on the Future of Europe, aimed at engaging communities at large and making EU decision-making more inclusive and participatory.

The current coronavirus crisis is likely to change society and our economy in ways as yet too early to predict, but recovery after the crisis will require new ways of thinking and acting to overcome common challenges, and thus making use of our collective intelligence should be more urgent than ever. In the longer term, in order to mobilise collective intelligence across the EU and to fully exploit its innovative potential, the EU needs to strengthen its education policies and promote a shared understanding of a holistic approach to innovation and of collective intelligence – and thus become a ‘global brain,’ with a solid institutional set-up at the centre of a subsidised experimentation process that meets the challenges imposed by modernday transformations…(More)”.

Privacy Protection Key for Using Patient Data to Develop AI Tools

Article by  Jessica Kent: “Clinical data should be treated as a public good when used for research or artificial intelligence algorithm development, so long as patients’ privacy is protected, according to a report from the Radiological Society of North America (RSNA).

As artificial intelligence and machine learning are increasingly applied to medical imaging, bringing the potential for streamlined analysis and faster diagnoses, the industry still lacks a broad consensus on an ethical framework for sharing this data.

“Now that we have electronic access to clinical data and the data processing tools, we can dramatically accelerate our ability to gain understanding and develop new applications that can benefit patients and populations,” said study lead author David B. Larson, MD, MBA, from the Stanford University School of Medicine. “But unsettled questions regarding the ethical use of the data often preclude the sharing of that information.”

To offer solutions around data sharing for AI development, RSNA developed a framework that highlights how to ethically use patient data for secondary purposes.

“Medical data, which are simply recorded observations, are acquired for the purposes of providing patient care,” Larson said….(More)”

Coronavirus Innovation Map

The Coronavirus Innovation Map is a platform of hundreds of innovations and solutions from around the world that help people cope and adapt to life amid the coronavirus pandemic, and to connect innovators.

The CoronaVirus Innovation Map is a visualized global database that is mapping the innovations related to tackling coronavirus in various fields such as diagnostics, treatment, lifestyle changes, etc., on a geographical scale….

Our goal with the Coronavirus Innovation Map is to build a crowdsourced resource that maps hundreds of innovations and solutions globally that help people cope and adapt to life amid the coronavirus, and to connect innovators.

This platform is a database for innovators to know who the other players are and where the projects or startups are located allowing them to connect and create solutions in this field. Policymakers will also be able to efficiently look for viable solutions in one place.

You may use the map to browse initiatives in specific locations (type a city or country in the search box), or choose a category wherein you would like to find a solution….(More)”

A Closer Look at Location Data: Privacy and Pandemics

Assessment by Stacey Gray: “In light of COVID-19, there is heightened global interest in harnessing location data held by major tech companies to track individuals affected by the virus, better understand the effectiveness of social distancing, or send alerts to individuals who might be affected based on their previous proximity to known cases. Governments around the world are considering whether and how to use mobile location data to help contain the virus: Israel’s government passed emergency regulations to address the crisis using cell phone location data; the European Commission requested that mobile carriers provide anonymized and aggregate mobile location data; and South Korea has created a publicly available map of location data from individuals who have tested positive. 

Public health agencies and epidemiologists have long been interested in analyzing device location data to track diseases. In general, the movement of devices effectively mirrors movement of people (with some exceptions discussed below). However, its use comes with a range of ethical and privacy concerns. 

In order to help policymakers address these concerns, we provide below a brief explainer guide of the basics: (1) what is location data, (2) who holds it, and (3) how is it collected? Finally we discuss some preliminary ethical and privacy considerations for processing location data. Researchers and agencies should consider: how and in what context location data was collected; the fact and reasoning behind location data being classified as legally “sensitive” in most jurisdictions; challenges to effective “anonymization”; representativeness of the location dataset (taking into account potential bias and lack of inclusion of low-income and elderly subpopulations who do not own phones); and the unique importance of purpose limitation, or not re-using location data for other civil or law enforcement purposes after the pandemic is over….(More)”.

Ask a Scientist

NYU Press Release: “Unreliable tips on how to protect oneself from the novel coronavirus and fake news about the COVID-19 pandemic are spreading as quickly as the virus itself.

The Governance Lab (The GovLab) at the New York University Tandon School of Engineering has collaborated with the Federation of American Scientists (FAS) and the State of New Jersey Office of Innovation to launch a free, interactive tool aimed at cutting through the noise and presenting clear, scientist-led, and evidence-based information and advice to the public.

Available in English and Spanish, “Ask a Scientist,” allows users to find answers to a wide range of commonly asked questions about the virus, the severity of the outbreak, best methods of prevention, and steps to take in the event you fall ill. All posted content is obtained from the World Health Organization, the Centers for Disease Control and Prevention, and other rigorously verified sources.

screenshot of website that allows users to type in questions about COVID-19

“Ask a Scientist” features a free, interactive tool allowing users to submit questions to a team of FAS researchers and a crowdsourced network of vetted science experts. In English and Spanish, the site also includes top articles and the latest information, and answers to a wide range of commonly asked questions about the COVID-19 epidemic, the severity of the outbreak, best methods of prevention, and steps to take in the event you fall ill.

If users do not find an answer to their specific questions, they have the option of submitting them to a team of FAS researchers and a crowdsourced network of vetted science experts led by the National Science Policy Network. Users can expect an answer within an hour, although that timeframe is expected to shorten as the network increases in size. Every answer is reviewed to ensure accuracy and timeliness, then added to the knowledge base for the benefit of others….(More)”.

Data Collaboratives in Response to COVID19

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. 

HELP US MAKE THIS REPOSITORY BETTER:  Individuals are encouraged to edit the repo and/or suggest additions to this document if a project is not currently listed.

See full Living Repository here.

Global Data Access for Solving Rare Disease: A Health Economics Value Framework

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)”.

Toward Building The Data Infrastructure And Ecosystem We Need To Tackle Pandemics And Other Dynamic Societal And Environmental Threats

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.

See also Living Repository of Data4COVID19 Collaboratives.

The Coronavirus Tech Handbook

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)”.