Stefaan Verhulst

Report by John Wilbanks et al: “Before COVID-19 took over the world, the Governance team at Sage Bionetworks had started working on an analysis of data governance structures and systems to be published as a “green paper” in late 2020. Today we’re happy to publicly release that paper, Mechanisms to Govern Responsible Sharing of Open Data: A Progress Report.

In the paper, we provide a landscape analysis of models of governance for open data sharing based on our observations in the biomedical sciences. We offer an overview of those observations and show areas where we think this work can expand to supply further support for open data sharing outside the sciences.

The central argument of this paper is that the “right” system of governance is determined by first understanding the nature of the collaborative activities intended. These activities map to types of governance structures, which in turn can be built out of standardized parts — what we call governance design patterns. In this way, governance for data science can be easy to build, follow key laws and ethics regimes, and enable innovative models of collaboration. We provide an initial survey of structures and design patterns, as well as examples of how we leverage this approach to rapidly build out ethics-centered governance in biomedical research.

While there is no one-size-fits-all solution, we argue for learning from ongoing data science collaborations and building on from existing standards and tools. And in so doing, we argue for data governance as a discipline worthy of expertise, attention, standards, and innovation.

We chose to call this report a “green paper” in recognition of its maturity and coverage: it’s a snapshot of our data governance ecosystem in biomedical research, not the world of all data governance, and the entire field of data governance is in its infancy. We have licensed the paper under CC-BY 4.0 and published it in github via Manubot in hopes that the broader data governance community might fill in holes we left, correct mistakes we made, add references and toolkits and reference implementations, and generally treat this as a framework for talking about how we share data…(More)”.

Report by Paul M. Barrett: “Recently, Section 230 of the Communications Decency Act of 1996 has come under sharp attack from members of both political parties, including presidential candidates Donald Trump and Joe Biden. The foundational law of the commercial internet, Section 230 does two things: It protects platforms and websites from most lawsuits related to content posted by third parties. And it guarantees this shield from liability even if the platforms and sites actively police the content they host. This protection has encouraged internet companies to innovate and grow, even as it has raised serious questions about whether social media platforms adequately self-regulate harmful content. In addition to the assaults by Trump and Biden, members of Congress have introduced a number of bills designed to limit the reach of Section 230. Some critics have asserted unrealistically that repealing or curbing Section 230 would solve a wide range of problems relating to internet governance. These critics also have played down the potentialy dire consequences that repeal would have for smaller internet companies. Academics, think tank researchers, and others outside of government have made a variety of more nuanced proposals for revising the law. We assess these ideas with an eye toward recommending and integrating the most promising ones. Our conclusion is that Section 230 ought to be preserved—but that it can be improved…(More)”

Article by Heather Clancy: “…many companies are moving to disclose “climate risk,” although far fewer are moving to actually minimize it. And as those tasked with preparing those reports can attest, the process of gathering the data for them is frustrating and complex, especially as the level of detail desired and required by investors becomes deeper.

That pain point was the inspiration for a new climate data project launched this week that will be spearheaded by the Linux Foundation, the nonprofit host organization for thousands of the most influential open source software and data initiatives in the world such as GitHub. The foundation is central to the evolution of the Linux software that runs in the back offices of most major financial services firms. 

There are four powerful founding members for the new group, the LF Climate Finance Foundation (LFCF): Insurance and asset management company Allianz, cloud software giants Amazon and Microsoft, and data intelligence powerhouse S&P Global. The foundation’s “planning team” includes World Wide Fund for Nature (WWF), Ceres and the Sustainability Account Standards Board (SASB).

The group’s intention is to collaborate on an open source project called the OS-Climate platform, which will include economic and physical risk scenarios that investors, regulators, companies, financial analysts and others can use for their analysis. 

The idea is to create a “public service utility” where certain types of climate data can be accessed easily, then combined with other, more proprietary information that someone might be using for risk analysis, according to Truman Semans, CEO of OS-Climate, who was instrumental in getting the effort off the ground. “There are a whole lot of initiatives out there that address pieces of the puzzle, but no unified platform to allow those to interoperate,” he told me. There are a whole lot of initiatives out there that address pieces of the puzzle, but no unified platform to allow those to interoperate.

Why does this matter? It helps to understand the history of open source software, which was once a thing that many powerful software companies, notably Microsoft, abhorred because they were worried about the financial hit on their intellectual property. Flash forward to today and the open source software movement, “staffed” by literally millions of software developers, is credited with accelerating the creation of common system-level elements so that companies can focus their own resources on solving problems directly related to their business.

In short, this budding effort could make the right data available more quickly, so that businesses — particularly financial institutions — can make better informed decisions.

Or, as Microsoft’s chief intellectual property counsel, Jennifer Yokoyama, observed in the announcement press release: “Addressing climate issues in a meaningful way requires people and organizations to have access to data to better understand the impact of their actions. Opening up and sharing our contribution of significant and relevant sustainability data through the LF Climate Finance Foundation will help advance the financial modeling and understanding of climate change impact — an important step in affecting political change. We’re excited to collaborate with the other founding members and hope additional organizations will join.”…(More)”

Essay by Karabi Acharya: “At the global learning team at the Robert Wood Johnson Foundation, it has been exciting to see people looking at what the world can teach us, whether that be how China is handling COVID-19, South Korea’s drive-through testing, or New Zealand’s elimination of the virus under Jacinda Ardern’s leadership. Yet in a survey conducted by Candid in early 2020 of foundations located in the US, 73 percent of respondents reported that their domestic grantmaking was rarely or not at all informed or inspired by ideas and solutions from around the globe and beyond US borders. 

These practices may be shifting. Those of us working in philanthropy, government, and social change are trying to learn as much about COVID-19 as possible, and that naturally includes looking abroad. Yet what will we actually see when we do? Too often, our vision is obscured by bias, and as we try to distinguish news from noise, good intentions are often not enough. We must ask ourselves critical questions, and train ourselves to overcome our biases.

Here are four ways to see the world in a new light, as we look to come out of the pandemic’s darkness:

Seeing Beyond the Familiar

COVID-19 has no borders and the same with good ideas. But too often, we are limited by what has been called the “country of origin effect,” a psychological effect in which people understand the quality and relevance of an object or idea by the country it comes from. In short, we tend to look for ideas from countries that are demographically, culturally, economically, or politically similar to us. In the US, this can mean we overvalue learning from Europe and undervalue learning from low- and middle-income countries.

Yet countries like Nigeria have much to teach us about contract tracing and mitigation from their experience eradicating the Ebola outbreak, just as Ghana’s innovative testing and taxation policies (including a three month tax holiday for health care workers) are balancing protecting health and the economy. In example after example of necessity being the mother of invention, African nations are leading the way in innovation: developing low-cost tests for under $1, using zipline drones to transport the tests to testing sites, and leveraging its cashless digital payment infrastructure to facilitate social distancing. Another often-ignored source of inspiration are Indigenous cultural practices, where ideas and practices centered around collective well-being can be instructive for us as we tackle issues of inequity arising out of COVID…

In other words, we look to other countries with the hope that doing so will change how we see our own, opening our imaginations to new ideas, solutions, and futures. This is only possible if we can overcome our biases that impair our ability to see the solutions around us. 

COVID-19 will be studied for generations to come. But what the world will learn will depend on what we were able to see today. Did we seek out solutions from every corner of the world? Did we bring on the journey those who would most benefit from what the world had to offer? Did we recognize the underlying conditions that exacerbate inequity or help overcome it? Was our imagination strong enough to see how we can create the kind of society that allows everyone the opportunity to live healthy and happier lives?…(More)”

DCMS (UK): “…With the increasing ascendance of data, it has become ever-more important that the government removes the unnecessary barriers that prevent businesses and organisations from accessing such information.

The importance of data sharing was demonstrated during the first few months of the coronavirus pandemic, when government departments, local authorities, charities and the private sector came together to provide essential services. One notable example is the Vulnerable Person Service, which in a very short space of time enabled secure data-sharing across the public and private sectors to provide millions of food deliveries and access to priority supermarket delivery slots for clinically extremely vulnerable people.

Aggregation of data from different sources can also lead to new insights that otherwise would not have been possible. For example, the Connected Health Cities project anonymises and links data from different health and social care services, providing new insights into the way services are used.

Vitally, data sharing can also fuel growth and innovation.²⁰ For new and innovating organisations, increasing data availability will mean that they, too, will be able to gain better insights from their work and access new markets – from charities able to pool beneficiary data to better evaluate the effectiveness of interventions, to new entrants able to access new markets. Often this happens as part of commercial arrangements; in other instances government has sought to intervene where there are clear consumer benefits, such as in relation to Open Banking and Smart Data. Government has also invested in the research and development of new mechanisms for better data sharing, such as the Office for AI and Innovate UK’s partnership with the Open Data Institute to explore data trusts.²¹

However, our call for evidence, along with engagement with stakeholders, has identified a range of barriers to data availability, including:

• a culture of risk aversion
• issues with current licensing regulations
• market barriers to greater re-use, including data hoarding and differential market power
• inconsistent formatting of public sector data
• issues pertaining to the discoverability of data
• privacy and security concerns
• the benefits relating to increased data sharing not always being felt by the organisation incurring the cost of collection and maintenance

This is a complex environment, and heavy-handed intervention may have the unwanted effect of reducing incentives to collect, maintain and share data for the benefit of the UK. It is clear that any way forward must be carefully considered to avoid unintended negative consequences. There is a balance to be struck between maintaining appropriate commercial incentives to collect data, while ensuring that data can be used widely for the benefit of the UK. For personal data, we must also take account of the balance between individual rights and public benefit.

This is a new issue for all digital economies that has come to the fore as data has become a significant modern, economic asset. Our approach will take account of those incentives, and consider how innovation can overcome perceived barriers to availability. For example, it can be limited to users with specific characteristics, by licence or regulator accreditation; it can be shared within a collaborating group of organisations; there may also be value in creating and sharing synthetic data to support research and innovation, as well as other privacy-enhancing technologies and techniques….(More)”.

 Zeynep Tufekci in the Atlantic: “In Michigan, a small liberal-arts college is requiring students to install an app called Aura, which tracks their location in real time, before they come to campus. Oakland University, also in Michigan, announced a mandatory wearable that would track symptoms, but, facing a student-led petition, then said it would be optional. The University of Missouri, too, has an app that tracks when students enter and exit classrooms. This practice is spreading: In an attempt to open during the pandemic, many universities and colleges around the country are forcing students to download location-tracking apps, sometimes as a condition of enrollment. Many of these apps function via Bluetooth sensors or Wi-Fi networks. When students enter a classroom, their phone informs a sensor that’s been installed in the room, or the app checks the Wi-Fi networks nearby to determine the phone’s location.

As a university professor, I’ve seen surveillance like this before. Many of these apps replicate the tracking system sometimes installed on the phones of student athletes, for whom it is often mandatory. That system tells us a lot about what we can expect with these apps.

There is a widespread charade in the United States that university athletes, especially those who play high-profile sports such as football and basketball, are just students who happen to be playing sports as amateurs “in their free time.” The reality is that these college athletes in high-level sports, who are aggressively recruited by schools, bring prestige and financial resources to universities, under a regime that requires them to train like professional athletes despite their lack of salary. However, making the most of one’s college education and training at that level are virtually incompatible, simply because the day is 24 hours long and the body, even that of a young, healthy athlete, can only take so much when training so hard. Worse, many of these athletes are minority students, specifically Black men, who were underserved during their whole K–12 education and faced the same challenge then as they do now: Train hard in hopes of a scholarship and try to study with what little time is left, often despite being enrolled in schools with mediocre resources. Many of them arrive at college with an athletic scholarship but not enough academic preparation compared with their peers who went to better schools and could also concentrate on schooling….(More)”

Paper by O.B Leal-Neto et al: “Participatory surveillance has shown promising results from its conception to its application in several public health events. The use of a collaborative information pathway provides a rapid way for the data collection on symptomatic individuals in the territory, to complement traditional health surveillance systems. In Brazil, this methodology has been used at the national level since 2014 during mass gatherings events since they have great importance for monitoring public health emergencies.

With the occurrence of the COVID-19 pandemic, and the limitation of the main non-pharmaceutical interventions for epidemic control – in this case, testing and social isolation – added to the challenge of existing underreporting of cases and delay of notifications, there is a demand on alternative sources of up to date information to complement the current system for disease surveillance. Several studies have demonstrated the benefits of participatory surveillance in coping with COVID-19, reinforcing the opportunity to modernize the way health surveillance has been carried out. Additionally, spatial scanning techniques have been used to understand syndromic scenarios, investigate outbreaks, and analyze epidemiological risk, constituting relevant tools for health management. While there are limitations in the quality of traditional health systems, the data generated by participatory surveillance reveals an interesting application combining traditional techniques to clarify epidemiological risks that demand urgency in decision-making. Moreover, with the limitations of testing available, the identification of priority areas for intervention is an important activity in the early response to public health emergencies. This study aimed to describe and analyze priority areas for COVID-19 testing combining data from participatory surveillance and traditional surveillance for respiratory syndromes….(More)”.

Paper by Thibault Schrepel: “One may identify two current trends in the field of “Law and Technology.” The first trend concerns technological determinism. Some argue that technology is deterministic: the state of technological advancement is the determining factor of society. Others oppose that view, claiming it is the society that affects technology. The second trend concerns technological neutrality. some say that technology is neutral, meaning the effects of technology depend entirely on the social context. Others defend the opposite: they view the effects of technology as being inevitable (regardless of the society in which it is used).

While it is commonly accepted that technology is deterministic, I am under the impression that a majority of “Law and Technology” scholars also believe that technology is non-neutral. It follows that, according to this dominant view, (1) technology drives society in good or bad directions (determinism), and that (2) certain uses of technology may lead to the reduction or enhancement of the common good (non-neutrality). Consequently, this leads to top-down tech policies where the regulator has the impossible burden of helping society control and orient technology to the best possible extent.

This article is deterministic and non-neutral.

But, here’s the catch. Most of today’s doctrine focuses almost exclusively on the negativity brought by technology (read Nick Bostrom, Frank Pasquale, Evgeny Morozov). Sure, these authors mention a few positive aspects, but still end up focusing on the negative ones. They’re asking to constrain technology on that sole basis. With this article, I want to raise another point: technology determinism can also drive society by providing solutions to centuries-old problems. In and of itself. This is not technological solutionism, as I am not arguing that technology can solve all of mankind’s problems, but it is not anti-solutionism either. I fear the extremes, anyway.

To make my point, I will discuss the issue addressed by Albert Hirschman in his famous book Exit, Voice, and Loyalty (Harvard University Press, 1970). Hirschman, at the time Professor of Economics at Harvard University, introduces the distinction between “exit” and “voice.” With exit, an individual exhibits her or his disagreement as a member of a group by leaving the group. With voice, the individual stays in the group but expresses her or his dissatisfaction in the hope of changing its functioning. Hirschman summarizes his theory on page 121, with the understanding that the optimal situation for any individual is to be capable of both “exit” and “voice“….(More)”.

Paper by Scheel, Anne M., Leonid Tiokhin, Peder M. Isager, and Daniel Lakens: “For almost half a century, Paul Meehl educated psychologists about how the mindless use of null-hypothesis significance tests made research on theories in the social sciences basically uninterpretable (Meehl, 1990). In response to the replication crisis, reforms in psychology have focused on formalising procedures for testing hypotheses. These reforms were necessary and impactful. However, as an unexpected consequence, psychologists have begun to realise that they may not be ready to test hypotheses. Forcing researchers to prematurely test hypotheses before they have established a sound ‘derivation chain’ between test and theory is counterproductive. Instead, various non-confirmatory research activities should be used to obtain the inputs necessary to make hypothesis tests informative.

Before testing hypotheses, researchers should spend more time forming concepts, developing valid measures, establishing the causal relationships between concepts and their functional form, and identifying boundary conditions and auxiliary assumptions. Providing these inputs should be recognised and incentivised as a crucial goal in and of itself.

In this article, we discuss how shifting the focus to non-confirmatory research can tie together many loose ends of psychology’s reform movement and help us lay the foundation to develop strong, testable theories, as Paul Meehl urged us to….(More)”

Blog by Katherine Flaschen and Ben Castleman: “In order to create the most effective solutions, policymakers and educators need to better understand a fundamental question: Why do so many of these students, many of whom have already made substantial progress toward their degree, fail to return to college and graduate? …

With a better understanding of the barriers preventing people who intend to finish their degree from following through, policymakers and colleges can create solutions that meaningfully meet students’ needs and help them re-enroll. As states across the country face rising unemployment rates, it’s critical to design and test interventions that address these behavioral barriers and help thousands of citizens who are out of work due to the COVID-19 crisis consider their options for going back to school.

For example, colleges could provide monetary incentives to students for taking actions related to re-enrollment that overcome these barriers, such as speaking with an advisor, reviewing upcoming recommended courses and developing a course plan, and making an active choice about when to return to college. In addition, SCND students could be paired with current students to serve as peer mentors, both to provide support with the re-enrollment process and to hold them accountable for degree completion (especially if faced with difficult remaining classes). Community colleges could also encourage major employers of the SCND population in high-demand fields, like health care, to provide options for employees to finish their degree while working (e.g., via tuition reimbursement programs), translate degree attainment into concrete career returns, and identify representatives within the company, such as recent graduates, to promote re-enrollment and make it a more salient opportunity….(More)”.