‘Neurorights’ and the next flashpoint of medical privacy

Curated on Posted on by Stefaan Verhulst

Article by Alex LaCasse: “Around the world, leading neuroscientists, neuroethicists, privacy advocates and legal minds are taking greater interest in brain data and its potential.

Opinions vary widely on the long-term advancements in technology designed to measure brain activity and their impacts on society, as new products trickle out of clinical settings and gain traction for commercial applications.

Some say alarm bells should already be sounding and argue the technology could have corrosive effects on democratic society. Others counter such claims are hyperbolic, given the uncertainty that technology can even measure certain brain activities in the purported way.

Today, neurotechnology is primarily confined to medical and research settings, with the use of various clinical-grade devices to monitor the brain activity of patients who may suffer from mental illnesses or paralysis to gauge muscle movement and record electroencephalography (the measurement of electrical activity and motor function in the brain)….

“I intentionally don’t call this neurorights or brain rights. I call it cognitive liberty,” Duke University Law and Philosophy Professor Nita Farahany said during a LinkedIn Live session. “There is promise of this technology, not only for people who are struggling with a loss of speech and loss of motor activity, but for everyday people.”

The jumping-off point of the panel centered around Farahany’s new book, “The Battle for Your Brain: The Ability to Think Freely in the Age of Neurotechnology,” which examines the neurotechnology landscape and potential negative outcomes without regulatory oversight.

Farahany was motivated to write the book because she saw a “chasm” between what she thought neurotechnology was capable of and the reality of some companies working to one day decode people’s inner thoughts on some level…(More)” (Book)”.

Health data justice: building new norms for health data governance

Curated on Posted on by Stefaan Verhulst

Paper by James Shaw & Sharifah Sekalala: “The retention and use of health-related data by government, corporate, and health professional actors risk exacerbating the harms of colonial systems of inequality in which health care and public health are situated, regardless of the intentions about how those data are used. In this context, a data justice perspective presents opportunities to develop new norms of health-related data governance that hold health justice as the primary objective. In this perspective, we define the concept of health data justice, outline urgent issues informed by this approach, and propose five calls to action from a health data justice perspective…(More)”.

Mapping and Comparing Data Governance Frameworks: A benchmarking exercise to inform global data governance deliberations

Curated on Posted on by Stefaan Verhulst

Paper by Sara Marcucci, Natalia Gonzalez Alarcon, Stefaan G. Verhulst, Elena Wullhorst: “Data has become a critical resource for organizations and society. Yet, it is not always as valuable as it could be since there is no well-defined approach to managing and using it. This article explores the increasing importance of global data governance due to the rapid growth of data and the need for responsible data use and protection. While historically associated with private organizational governance, data governance has evolved to include governmental and institutional bodies. However, the lack of a global consensus and fragmentation in policies and practices pose challenges to the development of a common framework. The purpose of this report is to compare approaches and identify patterns in the emergent and fragmented data governance ecosystem within sectors close to the international development field, ultimately presenting key takeaways and reflections on when and why a global data governance framework may be needed. Overall, the report highlights the need for a more holistic, coordinated transnational approach to data governance to manage the global flow of data responsibly and for the public interest. The article begins by giving an overview of the current fragmented data governance ecology, to then proceed to illustrate the methodology used. Subsequently, the paper illustrates the most relevant findings stemming from the research. These are organized according to six key elements: (a) purpose, (b) principles, (c) anchoring documents, (d) data description and lifecycle, (e) processes, and (f) practices. Finally, the article closes with a series of key takeaways and final reflections…(More)”.

Big data for whom? Data-driven estimates to prioritize the recovery needs of vulnerable populations after a disaster

Curated on Posted on by Stefaan Verhulst

Blog and paper by Sabine Loos and David Lallemant: “For years, international agencies have been effusing the benefits of big data for sustainable development. Emerging technology–such as crowdsourcing, satellite imagery, and machine learning–have the power to better inform decision-making, especially those that support the 17 Sustainable Development Goals. When a disaster occurs, overwhelming amounts of big data from emerging technology are produced with the intention to support disaster responders. We are seeing this now with the recent earthquakes in Turkey and Syria: space agencies are processing satellite imagery to map faults and building damage or digital humanitarians are crowdsourcing baseline data like roads and buildings.

Eight years ago, the Nepal 2015 earthquake was no exception–emergency managers received maps of shaking or crowdsourced maps of affected people’s needs from diverse sources. A year later, I began research with a team of folks involved during the response to the earthquake, and I was determined to understand how big data produced after disasters were connected to the long-term effects of the earthquake. Our research team found that a lot of data that was used to guide the recovery focused on building damage, which was often viewed as a proxy for population needs. While building damage information is useful, it does not capture the full array of social, environmental, and physical factors that will lead to disparities in long-term recovery. I assumed information would have been available immediately after the earthquake that was aimed at supporting vulnerable populations. However, as I spent time in Nepal during the years after the 2015 earthquake, speaking with government officials and nongovernmental organizations involved in the response and recovery, I found they lacked key information about the needs of the most vulnerable households–those who would face the greatest obstacles during the recovery from the earthquake. While governmental and nongovernmental actors prioritized the needs of vulnerable households as best as possible with the information available, I was inspired to pursue research that could provide better information more quickly after an earthquake, to inform recovery efforts.

In our paper published in Communications Earth and Environment [link], we develop a data-driven approach to rapidly estimate which areas are likely to fall behind during recovery due to physical, environmental, and social obstacles. This approach leverages survey data on recovery progress combined with geospatial datasets that would be readily available after an event that represent factors expected to impede recovery. To identify communities with disproportionate needs long after a disaster, we propose focusing on those who fall behind in recovery over time, or non-recovery. We focus on non-recovery since it places attention on those who do not recover rather than delineating the characteristics of successful recovery. In addition, in speaking to several groups in Nepal involved in the recovery, they understood vulnerability–a concept that is place-based and can change over time–as those who would not be able to recover due to the earthquake…(More)”

Organizing for Collective Action: Olson Revisited

Curated on Posted on by Stefaan Verhulst

Paper by Marco Battaglini & Thomas R. Palfrey: “We study a standard collective action problem in which successful achievement of a group interest requires costly participation by some fraction of its members. How should we model the internal organization of these groups when there is asymmetric information about the preferences of their members? How effective should we expect it to be as we increase the group’s size n? We model it as an optimal honest and obedient communication mechanism and we show that for large n it can be implemented with a very simple mechanism that we call the Voluntary Based Organization. Two new results emerge from this analysis. Independently of the assumptions on the underlying technology, the limit probability of success in the best honest and obedient mechanism is the same as in an unorganized group, a result that is not generally true if obedience is omitted. An optimal organization, however, provides a key advantage: when the probability of success converges to zero, it does so at a much slower rate than in an unorganized group. Because of this, significant probabilities of success are achievable with simple honest and obedient organizations even in very large groups…(More)”.

The Meta Oversight Board’s First Term

Curated on Posted on by Stefaan Verhulst

Paper by Evelyn Douek: “The Meta Oversight Board was established to oversee one of the most expansive systems of speech regulation in history and to exercise independent review over “some of the most difficult and significant
content decisions” Meta makes. As a voluntary exercise in selfregulation, the Board exercises power over Meta only insofar and for as long as Meta permits it to. And yet, in its inaugural members’ first threeyear term, the Board has in many ways defied its skeptics. The Board has established itself as a regular part of conversations about content moderation governance, receiving significant academic and media attention. It has also instantiated meaningful reforms of Meta’s content moderation systems, and shed light on otherwise completely opaque decisionmaking processes within one of the world’s most powerful
speech regulators. But the Board has also consistently shied away from answering the hardest and most controversial questions that come before it—that is, the very questions it was set up to solve. Although the Board purported to evaluate Meta’s rules under international human rights law, it has almost entirely failed to engage with the necessary the normative question of how international law principles created to constrain governmental power over expression should apply to private content moderation systems. This Essay argues that the Board’s institutional incentives and desire for influence have made it prioritize consensus and simplicity over engagement with the fundamental normative questions that the quest for principled content moderation decisionmaking raises. The result is a tremendous missed opportunity that holds important lessons for the design of future content moderation oversight bodies…(More)”

Satellite data: The other type of smartphone data you might not know about

Curated on Posted on by Stefaan Verhulst

Article by Tommy Cooke et al: “Smartphones determine your location in several ways. The first way involves phones triangulating distances between cell towers or Wi-Fi routers.

The second way involves smartphones interacting with navigation satellites. When satellites pass overhead, they transmit signals to smartphones, which allows smartphones to calculate their own location. This process uses a specialized piece of hardware called the Global Navigation Satellite System (GNSS) chipset. Every smartphone has one.

When these GNSS chipsets calculate navigation satellite signals, they output data in two standardized formats (known as protocols or languages): the GNSS raw measurement protocol and the National Marine Electronics Association protocol (NMEA 0183).

GNSS raw measurements include data such as the distance between satellites and cellphones and measurements of the signal itself.

NMEA 0183 contains similar information to GNSS raw measurements, but also includes additional information such as satellite identification numbers, the number of satellites in a constellation, what country owns a satellite, and the position of a satellite.

NMEA 0183 was created and is governed by the NMEA, a not-for-profit lobby group that is also a marine electronics trade organization. The NMEA was formed at the 1957 New York Boat Show when boating equipment manufacturers decided to build stronger relationships within the electronic manufacturing industry.

In the decades since, the NMEA 0183 data standard has improved marine electronics communications and is now found on a wide variety of non-marine communications devices today, including smartphones…

It is difficult to know who has access to data produced by these protocols. Access to NMEA protocols is only available under licence to businesses for a fee.

GNSS raw measurements, on the other hand, are a universal standard and can be read by different devices in the same way without a license. In 2016, Google allowed industries to have open access to it to foster innovation around device tracking accuracy, precision, analytics about how we move in real-time, and predictions about our movements in the future.

While automated processes can quietly harvest location data — like when a French-based company extracted location data from Salaat First, a Muslim prayer app — these data don’t need to be taken directly from smartphones to be exploited.

Data can be modelled, experimented with, or emulated in licensed devices in labs for innovation and algorithmic development.

Satellite-driven raw measurements from our devices were used to power global surveillance networks like STRIKE3, a now defunct European-led initiative that monitored and reported perceived threats to navigation satellites…(More)”.

What is the role of public servants and policymakers in the battle against mis- and disinformation in our democratic systems?

Curated on Posted on by Stefaan Verhulst

Article by Elsa Pilichowski: “Recent health, economic and geopolitical crises have highlighted the urgency for governments to strengthen their capacity to respond to the spread of false and misleading information, while simultaneously building more resilient societies better prepared to handle crises. The challenges faced demand a whole-of-society-approach. 

First, governments should help citizens become more digitally literate so that they can identify false information before they spread it, intentionally or not. Increasing societal resilience also means supporting a diverse and independent media sector which can give voice to all viewpoints. Finally, new partnerships between civil society, the media, social media platforms and governments need to be built to help pre-bunk and de-bunk mis- and disinformation.

While not the ultimate actor in information provision, governments themselves will have to step up their capacities in the information space by strengthening inter-agency coordination mechanisms, developing innovative strategies and tools, and working with international partners to build knowledge of the origins and pathways of mis- and disinformation. Another specific avenue is to help ensure the role of public communication in reinforcing an information space conducive to democracy. Breaking down internal silos to facilitate collaboration; building partnerships with external stakeholders like fact-checkers; and focusing on efforts to reach all segments of society with accurate information will all be important.

Regulatory responses that help establish effective transparency frameworks around content moderation processes and decisions, build understanding of the role of algorithms in the spread of mis- and disinformation and promote a fairer and more responsible business environment are all key priorities. Such constructive and process-based regulation is all the more critical to safeguard against government interference in the free flow of information and impingement upon one of the foundational values of democracy—the right to free and open speech…(More)”

Governance for Human Social Flourishing

Curated on Posted on by Stefaan Verhulst

Paper by Jenna Bednar: “Government has become something that happens to us in service of the economy rather than a vehicle driven by us to realize what we can achieve together. To save the planet and live meaningful lives, we need to start seeing one another not as competitors but as collaborators working toward shared interests. In this essay, I propose a framework for human social flourishing to foster a public policy that rebuilds our connections and care for one another. It is based on four pillars-dignity, community, beauty, and sustainability-and emphasizes not just inclusiveness but participation, and highlights the importance of policy-making at the local level in the rebuilding of prosocial norms.

By many aggregate measures, the human condition has improved spectacularly.1 Life expectancy, gdp per capita, opportunities for self-expression, and the probability of not living in poverty have all surged over the last half century. This period of remarkable advances has scaffolded a neoliberal political economy that prizes self-reliance and prosperity. Yet for all of the successes produced by the prosperity frame, it has proven incapable of meeting the challenges of climate change and bungled a pandemic response, turning what might have been a moment to celebrate scientific achievement and human commitment to care for one another into a time of greater polarization and science skepticism. Racism persists and we are unable to lift people out of lives of despair.2

These failures call into question our focus on economic prosperity metrics like gdp and the constellation of institutions that supports that goal.3 Economic prosperity has a far from perfect correlation with the less material and measurable goals that create meaningful lives: feeling needed by and belonging to a community, having purposeful work and agency in one’s life, and having opportunities to feel satisfaction and joy.

By ignoring these other dimensions, the prosperity frame creates other harms. Its valuation of self-reliance subverts the human drive to mutualism.4 It casts government as a grabbing hand instead of an engine for collective action. In downplaying the importance of our relationships with one another, it undermines the social norms that support democracy, capitalism, and other social institutions.

For these reasons, many now suggest that our political economy needs to expand its frame beyond economic growth to include collective flourishing. But what is flourishing, and what would it take to reorient our political economy to value it?…(More)”.

I, Human: AI, Automation, and the Quest to Reclaim What Makes Us Unique

Curated on Posted on by Stefaan Verhulst

Book by Thomas Chamorro-Premuzic: “For readers of “Sapiens” and “Homo Deus” and viewers of “The Social Dilemma,” psychologist Tomas Chamorro-Premuzic tackles one of the biggest questions facing our species: Will we use artificial intelligence to improve the way we work and live, or will we allow it to alienate us? It’s no secret that AI is changing the way we live, work, love, and entertain ourselves. Dating apps are using AI to pick our potential partners. Retailers are using AI to predict our behavior and desires. Rogue actors are using AI to persuade us with bots and misinformation. Companies are using AI to hire us–or not. In “I, Human” psychologist Tomas Chamorro-Premuzic takes readers on an enthralling and eye-opening journey across the AI landscape. Though AI has the potential to change our lives for the better, he argues, AI is also worsening our bad tendencies, making us more distracted, selfish, biased, narcissistic, entitled, predictable, and impatient. It doesn’t have to be this way. Filled with fascinating insights about human behavior and our complicated relationship with technology, I, Human will help us stand out and thrive when many of our decisions are being made for us. To do so, we’ll need to double down on our curiosity, adaptability, and emotional intelligence while relying on the lost virtues of empathy, humility, and self-control. This is just the beginning. As AI becomes smarter and more humanlike, our societies, our economies, and our humanity will undergo the most dramatic changes we’ve seen since the Industrial Revolution. Some of these changes will enhance our species. Others may dehumanize us and make us more machinelike in our interactions with people. It’s up to us to adapt and determine how we want to live and work. The choice is ours. What will we decide?…(More)”.