Digital Contact Tracing for Pandemic Response: Ethics and Governance Guidance

Curated on Posted on by Stefaan Verhulst

Book edited by Jeffrey Kahn and Johns Hopkins Project on Ethics and Governance of Digital Contact Tracing Technologies: “As public health professionals around the world work tirelessly to respond to the COVID-19 pandemic, it is clear that traditional methods of contact tracing need to be augmented in order to help address a public health crisis of unprecedented scope. Innovators worldwide are racing to develop and implement novel public-facing technology solutions, including digital contact tracing technology. These technological products may aid public health surveillance and containment strategies for this pandemic and become part of the larger toolbox for future infectious outbreak prevention and control.

As technology evolves in an effort to meet our current moment, Johns Hopkins Project on Ethics and Governance of Digital Contact Tracing Technologies—a rapid research and expert consensus group effort led by Dr. Jeffrey Kahn of the Johns Hopkins Berman Institute of Bioethics in collaboration with the university’s Center for Health Security—carried out an in-depth analysis of the technology and the issues it raises. Drawing on this analysis, they produced a report that includes detailed recommendations for technology companies, policymakers, institutions, employers, and the public. The project brings together perspectives from bioethics, health security, public health, technology development, engineering, public policy, and law to wrestle with the complex interactions of the many facets of the technology and its applications. This team of experts from Johns Hopkins University and other world-renowned institutions has crafted clear and detailed guidelines to help manage the creation, implementation, and application of digital contact tracing. Digital Contact Tracing Technology for Pandemic Response is the essential resource for this fast-moving crisis…(More)”.

BiblioVid

Curated on Posted on by Stefaan Verhulst

About: “The project BiblioVid was born out the observation that, when confronted to a serious global crisis, like during the COVID-19 pandemics, it is very hard for health professionals to keep in touch with the latest development, results and recommendations on how to manage the situation. Moreover, it is very hard to quickly make the distinction between valid and doubtful information, high- and low-quality data, as these get thrown around into the mediatic maelstrom.

In this context, four friends working at the Grenoble Alpes University Hospital Center, we decided to join forces on two projects, the first one on monitoring and analyzing the most recent literature on COVID-19 and the second one aimed at providing support for health students during the COVID-19 health crisis…

Now this project breached the French boundaries, reaching health professionals in many countries with teams from Belgium and Canada joining-in to help with the development and dissemination of this tool…(More)”.

Removing the pump handle: Stewarding data at times of public health emergency

Curated on Posted on by Stefaan Verhulst

Reema Patel at Significance: “There is a saying, incorrectly attributed to Mark Twain, that states: “History never repeat itself but it rhymes”. Seeking to understand the implications of the current crisis for the effective use of data, I’ve drawn on the nineteenth-century cholera outbreak in London’s Soho to identify some “rhyming patterns” that might inform our approaches to data use and governance at this time of public health crisis.

Where better to begin than with the work of Victorian pioneer John Snow? In 1854, Snow’s use of a dot map to illustrate clusters of cholera cases around public water pumps, and of statistics to establish the connection between the quality of water sources and cholera outbreaks, led to a breakthrough in public health interventions – and, famously, the removal of the handle of a water pump in Broad Street.

Data is vital

We owe a lot to Snow, especially now. His examples teaches us that data has a central role to play in saving lives, and that the effective use of (and access to) data is critical for enabling timely responses to public health emergencies.

Take, for instance, transport app CityMapper’s rapid redeployment of its aggregated transport data. In the early days of the Covid-19 pandemic, this formed part of an analysis of compliance with social distancing restrictions across a range of European cities. There is also the US-based health weather map, which uses anonymised and aggregated data to visualise fever, specifically influenza-like illnesses. This data helped model early indications of where, and how quickly, Covid-19 was spreading….

Ethics and human rights still matter

As the current crisis evolves, many have expressed concern that the pandemic will be used to justify the rapid roll out of surveillance technologies that do not meet ethical and human rights standards, and that this will be done in the name of the “public good”. Examples of these technologies include symptom- and contact-tracing applications. Privacy experts are also increasingly concerned that governments will be trading off more personal data than is necessary or proportionate to respond to the public health crisis.

Many ethical and human rights considerations (including those listed at the bottom of this piece) are at risk of being overlooked at this time of emergency, and governments would be wise not to press ahead regardless, ignoring legitimate concerns about rights and standards. Instead, policymakers should begin to address these concerns by asking how we can prepare (now and in future) to establish clear and trusted boundaries for the use of data (personal and non-personal) in such crises.

Democratic states in Europe and the US have not, in recent memory, prioritised infrastructures and systems for a crisis of this scale – and this has contributed to our current predicament. Contrast this with Singapore, which suffered outbreaks of SARS and H1N1, and channelled this experience into implementing pandemic preparedness measures.

We cannot undo the past, but we can begin planning and preparing constructively for the future, and that means strengthening global coordination and finding mechanisms to share learning internationally. Getting the right data infrastructure in place has a central role to play in addressing ethical and human rights concerns around the use of data….(More)”.

Stay alert, infodemic, Black Death: the fascinating origins of pandemic terms

Curated on Posted on by Stefaan Verhulst

Simon Horobin at The Conversation: “Language always tells a story. As COVID-19 shakes the world, many of the words we’re using to describe it originated during earlier calamities – and have colourful tales behind them.

In the Middle Ages, for example, fast-spreading infectious diseases were known as plagues – as in the Bubonic plague, named for the characteristic swellings (or buboes) that appear in the groin or armpit. With its origins in the Latin word plaga meaning “stroke” or “wound”, plague came to refer to a wider scourge through its use to describe the ten plagues suffered by the Egyptians in the biblical book of Exodus.

An alternative term, pestilence, derives from Latin pestis (“plague”), which is also the origin of French peste, the title of the 1947 novel by Albert Camus (La Peste, or The Plague) which has soared up the bestseller charts in recent weeks. Latin pestis also gives us pest, now used to describe animals that destroy crops, or any general nuisance or irritant. Indeed, the bacterium that causes Bubonic plague is called Yersinia pestis….

The later plagues of the 17th century led to the coining of the word epidemic. This came from a Greek word meaning “prevalent”, from epi “upon” and demos “people”. The more severe pandemic is so called because it affects everyone (from Greek pan “all”).

A more recent coinage, infodemic, a blend of info and epidemic, was introduced in 2003 to refer to the deluge of misinformation and fake news that accompanied the outbreak of SARS (an acronym formed from the initial letters of “severe acute respiratory syndrome”).

The 17th-century equivalent of social distancing was “avoiding someone like the plague”. According to Samuel Pepys’s account of the outbreak that ravaged London in 1665, infected houses were marked with a red cross and had the words “Lord have mercy upon us” inscribed on the doors. Best to avoid properties so marked….(More)”.

Governing Simulations: Intro to Necroeconomics

Curated on Posted on by Stefaan Verhulst

Bryan Wolff, Yevheniia Berchul, Yu Gong, Andrey Shevlyakov at Strelka Mag: “French philosopher Michel Foucault defined biopower as the power over bodies, or the social and political techniques to control people’s lives. Cameroonian philosopher Achille Mbembe continued this line of thinking to arrive at necropolitics, the politics of death, or as he phrases it: “contemporary forms of subjugation of life, to the power of death.” COVID-19 has put these powers in sharp relief. Most world-changing events of the twenty-first century have been internalized with the question “where were you?” For example, “where were you when the planes hit?” But the pandemic knows no single universal moment to refer to. It’s become as much a question of when, as of where. “When did you take the pandemic seriously?” Most likely, your answer stands in direct relation to your proximity to death. Whether a critical mass or a specific loss, fatality defined COVID-19’s reality.

For many governments, it wasn’t the absolute count of death, but rather its simulations that made them take action. The United States was one of the last countries holding out on a lockdown until the Imperial College report projected the possibility of two million to four million fatalities in the US alone (if no measures were taken). And these weren’t the only simulations being run. A week into the lockdown, it was wondered aloud whether this was all worth the cost. It was a unique public reveal of the deadly economics—or necroeconomics—that we’re usually insulated from, whether through specialist language games or simply because they’re too grim to face. But ignoring the financialization of our demise doesn’t make it go away. If we are to ever reconsider the systems meant to keep us alive, we’d better get familiar. What better place to start than to see the current crisis through the eyes of one of the most widely used models of death: the one that puts a price on life. It’s called the “Value of a Statistical Life” or VSL..(More)”.

The Big Failure of Small Government

Curated on Posted on by Stefaan Verhulst

Mariana Mazzucato and Giulio Quaggiotto at Project Syndicate: “Decades of privatization, outsourcing, and budget cuts in the name of “efficiency” have significantly hampered many governments’ responses to the COVID-19 crisis. At the same time, successful responses by other governments have shown that investments in core public-sector capabilities make all the difference in times of emergency. The countries that have handled the crisis well are those where the state maintains a productive relationship with value creators in society, by investing in critical capacities and designing private-sector contracts to serve the public interest.

From the United States and the United Kingdom to Europe, Japan, and South Africa, governments are investing billions – and, in some cases, trillions – of dollars to shore up national economies. Yet, if there is one thing we learned from the 2008 financial crisis, it is that quality matters at least as much as quantity. If the money falls on empty, weak, or poorly managed structures, it will have little effect, and may simply be sucked into the financial sector. Too many lives are at stake to repeat past errors.

Unfortunately, for the last half-century, the prevailing political message in many countries has been that governments cannot – and therefore should not – actually govern. Politicians, business leaders, and pundits have long relied on a management creed that focuses obsessively on static measures of efficiency to justify spending cuts, privatization, and outsourcing.

As a result, governments now have fewer options for responding to the crisis, which may be why some are now desperately clinging to the unrealistic hope of technological panaceas such as artificial intelligence or contact-tracing apps. With less investment in public capacity has come a loss of institutional memory (as the UK’s government has discovered) and increased dependence on private consulting firms, which have raked in billions. Not surprisingly, morale among public-sector employees has plunged in recent years.

Consider two core government responsibilities during the COVID-19 crisis: public health and the digital realm. In 2018 alone, the UK government outsourced health contracts worth £9.2 billion ($11.2 billion), putting 84% of beds in care homes in the hands of private-sector operators (including private equity firms). Making matters worse, since 2015, the UK’s National Health Service has endured £1 billion in budget cuts.

Outsourcing by itself is not the problem. But the outsourcing of critical state capacities clearly is, especially when the resulting public-private “partnerships” are not designed to serve the public interest. Ironically, some governments have outsourced so eagerly that they have undermined their own ability to structure outsourcing contracts. After a 12-year effort to spur the private sector to develop low-cost ventilators, the US government is now learning that outsourcing is not a reliable way to ensure emergency access to medical equipment….(More)”.

The public debate around COVID-19 demonstrates our ongoing and misplaced trust in numbers

Curated on Posted on by Stefaan Verhulst

Ville Aula at LSE Blogs: “Read the front page of any major newspaper and I guarantee that the latest number of patients who have tested positive for COVID-19 and the number of mortalities will feature heavily. Open your social media accounts and you will quickly encounter graphs that show the mounting numbers of cases in different countries, complemented by modelling projections. These numbers and graphs feed the popular imagination of how well countries are “flattening the curve”, a concept that has brought epidemiological modelling inspired language to everyone’s lips. 

Numbers, graphs, and data are thus playing an essential part in how we experience the pandemic. The endless flows of numbers from different countries are meticulously compared with those from others. These comparisons then form the basis to how individual countries are portrayed and ranked in the global pandemic drama. 

But, there is also doubt in the air. We distrust the existing numbers and call for ever-more accurate information. For example, there has been a lively debate on how widespread the pandemic has been in China, an issue that connects directly to how tests are administered and cases reported. Equally, numbers from Europe do not provide indisputable or uniform information on the pandemic either, because their collection is subject to vastly different policies, practices, and contexts that make comparisons difficult. We also lack the scientific consensus that would allow us to link the number of mortalities to the prevalence of the virus, yet mortalities are still often taken as the most solid form of information on the pandemic.  These doubts have fuelled demands to do systematic population level testing of the virus prevalence, which is just a different way of saying that we need more numbers. 

Numbers are thus both the problem and the solution, and we want more of them. However, what makes numbers useful for developing better treatments and policies, does not necessarily lead to the same outcomes when applied to public debate. In the broader sphere of public debate, such tendencies reveal a longing for the veracity of data during times of uncertainty. Even when such calls are founded on demands for transparency in the name of democracy or healthy skepticism of existing data, they are entangled in a faulty logic of data itself eventually providing a solid standing for public debate….(More)”.

Sovereigns, Viruses, and the Law: The Normative Challenges of Pandemic in Today’s Information Societies

Curated on Posted on by Stefaan Verhulst

Paper by Ugo Pagallo: “The paper examines the legal and political impact of the Covid-19 crisis, drawing the attention to fundamental questions on authority and political legitimacy, coercion and obligation, power and cooperation. National states and sovereign governments have had and still will have a crucial role in re-establishing the public health sector and addressing the colossal challenges of economic re-construction. Scholars have accordingly discussed the set of legal means displayed during this crisis: emergency decrees, lockdowns, travel bans, and generally speaking, powers of the state of exception.

The aim of this paper is to stress the limits of such perspectives on powers of national governments and sovereigns, in order to illustrate what goes beyond such powers. Focus should be on the ontological, epistemic and normative constraints that affect today’s rights and duties of national states. Such constraints correspond to a class of problems that is complex, often transnational, and increasingly data-driven. In addition, we should not overlook the lessons learnt from such fields, as environmental law and internet governance, anti-terrorism and transnational business law, up to the regulation of Artificial Intelligence (AI). Such fields show that legal co-regulation and mechanisms of coordination and cooperation complement the traditional powers of national governments even in the times of the mother of all pandemics. The Covid-19 crisis has been often interpreted as if this were the last chapter of an on-going history about the Leviathan and its bio-powers. It is not. The crisis regards the end of the first chapter on the history of today’s information societies….(More)”.

The Coronavirus Is Rewriting Our Imaginations

Curated on Posted on by Stefaan Verhulst

Kim Stanley Robinson at the New Yorker: “…We are individuals first, yes, just as bees are, but we exist in a larger social body. Society is not only real; it’s fundamental. We can’t live without it. And now we’re beginning to understand that this “we” includes many other creatures and societies in our biosphere and even in ourselves. Even as an individual, you are a biome, an ecosystem, much like a forest or a swamp or a coral reef. Your skin holds inside it all kinds of unlikely coöperations, and to survive you depend on any number of interspecies operations going on within you all at once. We are societies made of societies; there are nothing but societies. This is shocking news—it demands a whole new world view. And now, when those of us who are sheltering in place venture out and see everyone in masks, sharing looks with strangers is a different thing. It’s eye to eye, this knowledge that, although we are practicing social distancing as we need to, we want to be social—we not only want to be social, we’ve got to be social, if we are to survive. It’s a new feeling, this alienation and solidarity at once. It’s the reality of the social; it’s seeing the tangible existence of a society of strangers, all of whom depend on one another to survive. It’s as if the reality of citizenship has smacked us in the face.

As for government: it’s government that listens to science and responds by taking action to save us. Stop to ponder what is now obstructing the performance of that government. Who opposes it?…

There will be enormous pressure to forget this spring and go back to the old ways of experiencing life. And yet forgetting something this big never works. We’ll remember this even if we pretend not to. History is happening now, and it will have happened. So what will we do with that?

A structure of feeling is not a free-floating thing. It’s tightly coupled with its corresponding political economy. How we feel is shaped by what we value, and vice versa. Food, water, shelter, clothing, education, health care: maybe now we value these things more, along with the people whose work creates them. To survive the next century, we need to start valuing the planet more, too, since it’s our only home.

It will be hard to make these values durable. Valuing the right things and wanting to keep on valuing them—maybe that’s also part of our new structure of feeling. As is knowing how much work there is to be done. But the spring of 2020 is suggestive of how much, and how quickly, we can change. It’s like a bell ringing to start a race. Off we go—into a new time….(More)”.

Viruses Cross Borders. To Fight Them, Countries Must Let Medical Data Flow, Too

Curated on Posted on by Stefaan Verhulst

Nigel Cory at ITIF: “If nations could regulate viruses the way many regulate data, there would be no global pandemics. But the sad reality is that, in the midst of the worst global pandemic in living memory, many nations make it unnecessarily complicated and costly, if not illegal, for health data to cross their borders. In so doing, they are hindering critically needed medical progress.

In the COVID-19 crisis, data analytics powered by artificial intelligence (AI) is critical to identifying the exact nature of the pandemic and developing effective treatments. The technology can produce powerful insights and innovations, but only if researchers can aggregate and analyze data from populations around the globe. And that requires data to move across borders as part of international research efforts by private firms, universities, and other research institutions. Yet, some countries, most notably China, are stopping health and genomic data at their borders.

Indeed, despite the significant benefits to companies, citizens, and economies that arise from the ability to easily share data across borders, dozens of countries—across every stage of development—have erected barriers to cross-border data flows. These data-residency requirements strictly confine data within a country’s borders, a concept known as “data localization,” and many countries have especially strict requirements for health data.

China is a noteworthy offender, having created a new digital iron curtain that requires data localization for a range of data types, including health data, as part of its so-called “cyber sovereignty” strategy. A May 2019 State Council regulation required genomic data to be stored and processed locally by Chinese firms—and foreign organizations are prohibited. This is in service of China’s mercantilist strategy to advance its domestic life sciences industry. While there has been collaboration between U.S. and Chinese medical researchers on COVID-19, including on clinical trials for potential treatments, these restrictions mean that it won’t involve the transfer, aggregation, and analysis of Chinese personal data, which otherwise might help find a treatment or vaccine. If China truly wanted to make amends for blocking critical information during the early stages of the outbreak in Wuhan, then it should abolish this restriction and allow genomic and other health data to cross its borders.

But China is not alone in limiting data flows. Russia requires all personal data, health-related or not, to be stored locally. India’s draft data protection bill permits the government to classify any sensitive personal data as critical personal data and mandate that it be stored and processed only within the country. This would be consistent with recent debates and decisions to require localization for payments data and other types of data. And despite its leading role in pushing for the free flow of data as part of new digital trade agreements, Australia requires genomic and other data attached to personal electronic health records to be only stored and processed within its borders.

Countries also enact de facto barriers to health and genomic data transfers by making it harder and more expensive, if not impractical, for firms to transfer it overseas than to store it locally. For example, South Korea and Turkey require firms to get explicit consent from people to transfer sensitive data like genomic data overseas. Doing this for hundreds or thousands of people adds considerable costs and complexity.

And the European Union’s General Data Protection Regulation encourages data localization as firms feel pressured to store and process personal data within the EU given the restrictions it places on data transfers to many countries. This is in addition to the renewed push for local data storage and processing under the EU’s new data strategy.

Countries rationalize these steps on the basis that health data, particularly genomic data, is sensitive. But requiring health data to be stored locally does little to increase privacy or data security. The confidentiality of data does not depend on which country the information is stored in, only on the measures used to store it securely, such as via encryption, and the policies and procedures the firms follow in storing or analyzing the data. For example, if a nation has limits on the use of genomics data, then domestic organizations using that data face the same restrictions, whether they store the data in the country or outside of it. And if they share the data with other organizations, they must require those organizations, regardless of where they are located, to abide by the home government’s rules.

As such, policymakers need to stop treating health data differently when it comes to cross-border movement, and instead build technical, legal, and ethical protections into both domestic and international data-governance mechanisms, which together allow the responsible sharing and transfer of health and genomic data.

This is clearly possible—and needed. In February 2020, leading health researchers called for an international code of conduct for genomic data following the end of their first-of-its-kind international data-driven research project. The project used a purpose-built cloud service that stored 800 terabytes of genomic data on 2,658 cancer genomes across 13 data centers on three continents. The collaboration and use of cloud computing were transformational in enabling large-scale genomic analysis….(More)”.