Americans Want to Share Their Medical Data. So Why Can’t They?

Curated on Posted on by Stefaan Verhulst

Eleni Manis at RealClearHealth: “Americans are willing to share personal data — even sensitive medical data — to advance the common good. A recent Stanford University study found that 93 percent of medical trial participants in the United States are willing to share their medical data with university scientists and 82 percent are willing to share with scientists at for-profit companies. In contrast, less than a third are concerned that their data might be stolen or used for marketing purposes.

However, the majority of regulations surrounding medical data focus on individuals’ ability to restrict the use of their medical data, with scant attention paid to supporting the ability to share personal data for the common good. Policymakers can begin to right this balance by establishing a national medical data donor registry that lets individuals contribute their medical data to support research after their deaths. Doing so would help medical researchers pursue cures and improve health care outcomes for all Americans.

Increased medical data sharing facilitates advances in medical science in three key ways. First, de-identified participant-level data can be used to understand the results of trials, enabling researchers to better explicate the relationship between treatments and outcomes. Second, researchers can use shared data to verify studies and identify cases of data fraud and research misconduct in the medical community. For example, one researcher recently discovered a prolific Japanese anesthesiologist had falsified data for almost two decades. Third, shared data can be combined and supplemented to support new studies and discoveries.

Despite these benefits, researchers, research funders, and regulators have struggled to establish a norm for sharing clinical research data. In some cases, regulatory obstacles are to blame. HIPAA — the federal law regulating medical data — blocks some sharing on grounds of patient privacy, while federal and state regulations governing data sharing are inconsistent. Researchers themselves have a proprietary interest in data they produce, while academic researchers seeking to maximize publications may guard data jealously.

Though funding bodies are aware of this tension, they are unable to resolve it on their own. The National Institutes of Health, for example, requires a data sharing plan for big-ticket funding but recognizes that proprietary interests may make sharing impossible….(More)”.

#TrendingLaws: How can Machine Learning and Network Analysis help us identify the “influencers” of Constitutions?

Curated on Posted on by Stefaan Verhulst
Unicef: “New research by scientists from UNICEF’s Office of Innovation — published today in the journal Nature Human Behaviour — applies methods from network science and machine learning to constitutional law.  UNICEF Innovation Data Scientists Alex Rutherford and Manuel Garcia-Herranz collaborated with computer scientists and political scientists at MIT, George Washington University, and UC Merced to apply data analysis to the world’s constitutions over the last 300 years. This work sheds new light on how to better understand why countries’ laws change and incorporate social rights…

Data science techniques allow us to use methods like network science and machine learning to uncover patterns and insights that are hard for humans to see. Just as we can map influential users on Twitter — and patterns of relations between places to predict how diseases will spread — we can identify which countries have influenced each other in the past and what are the relations between legal provisions.

Why The Science of Constitutions?

One way UNICEF fulfills its mission is through advocacy with national governments — to enshrine rights for minorities, notably children, formally in law. Perhaps the most renowned example of this is the International Convention on the Rights of the Child (ICRC).

Constitutions, such as Mexico’s 1917 constitution — the first to limit the employment of children — are critical to formalizing rights for vulnerable populations. National constitutions describe the role of a country’s institutions, its character in the eyes of the world, as well as the rights of its citizens.

From a scientific standpoint, the work is an important first step in showing that network analysis and machine learning technique can be used to better understand the dynamics of caring for and protecting the rights of children — critical to the work we do in a complex and interconnected world. It shows the significant, and positive policy implications of using data science to uphold children’s rights.

What the Research Shows:

Through this research, we uncovered:

  • A network of relationships between countries and their constitutions.
  • A natural progression of laws — where fundamental rights are a necessary precursor to more specific rights for minorities.
  • The effect of key historical events in changing legal norms….(More)”.

The economic value of data: discussion paper

Curated on Posted on by Stefaan Verhulst

HM Treasury (UK): “Technological change has radically increased both the volume of data in the economy, and our ability to process it. This change presents an opportunity to transform our economy and society for the better.

Data-driven innovation holds the keys to addressing some of the most significant challenges confronting modern Britain, whether that is tackling congestion and improving air quality in our cities, developing ground-breaking diagnosis systems to support our NHS, or making our businesses more productive.

The UK’s strengths in cutting-edge research and the intangible economy make it well-placed to be a world leader, and estimates suggest that data-driven technologies will contribute over £60 billion per year to the UK economy by 2020.1 Recent events have raised public questions and concerns about the way that data, and particularly personal data, can be collected, processed, and shared with third party organisations.

These are concerns that this government takes seriously. The Data Protection Act 2018 updates the UK’s world-leading data protection framework to make it fit for the future, giving individuals strong new rights over how their data is used. Alongside maintaining a secure, trusted data environment, the government has an important role to play in laying the foundations for a flourishing data-driven economy.

This means pursuing policies that improve the flow of data through our economy, and ensure that those companies who want to innovate have appropriate access to high-quality and well-maintained data.

This discussion paper describes the economic opportunity presented by data-driven innovation, and highlights some of the key challenges that government will need to address, such as: providing clarity around ownership and control of data; maintaining a strong, trusted data protection framework; making effective use of public sector data; driving interoperability and standards; and enabling safe, legal and appropriate data sharing.

Over the last few years, the government has taken significant steps to strengthen the UK’s position as a world leader in data-driven innovation, including by agreeing the Artificial Intelligence Sector Deal, establishing the Geospatial Commission, and making substantial investments in digital skills. The government will build on those strong foundations over the coming months, including by commissioning an Expert Panel on Competition in Digital Markets. This Expert Panel will support the government’s wider review of competition law by considering how competition policy can better enable innovation and support consumers in the digital economy.

There are still big questions to be answered. This document marks the beginning of a wider set of conversations that government will be holding over the coming year, as we develop a new National Data Strategy….(More)”.

Technology, Activism, and Social Justice in a Digital Age

Curated on Posted on by Stefaan Verhulst

Book edited by John G. McNutt: “…offers a close look at both the present nature and future prospects for social change. In particular, the text explores the cutting edge of technology and social change, while discussing developments in social media, civic technology, and leaderless organizations — as well as more traditional approaches to social change.

It effectively assembles a rich variety of perspectives to the issue of technology and social change; the featured authors are academics and practitioners (representing both new voices and experienced researchers) who share a common devotion to a future that is just, fair, and supportive of human potential.

They come from the fields of social work, public administration, journalism, law, philanthropy, urban affairs, planning, and education, and their work builds upon 30-plus years of research. The authors’ efforts to examine changing nature of social change organizations and the issues they face will help readers reflect upon modern advocacy, social change, and the potential to utilize technology in making a difference….(More)”

Regulatory Technology – Replacing Law with Computer Code

Curated on Posted on by Stefaan Verhulst

LSE Legal Studies Working Paper by Eva Micheler and Anna Whaley: “Recently both the Bank of England and the Financial Conduct Authority have carried out experiments using new digital technology for regulatory purposes. The idea is to replace rules written in natural legal language with computer code and to use artificial intelligence for regulatory purposes.

This new way of designing public law is in line with the government’s vision for the UK to become a global leader in digital technology. It is also reflected in the FCA’s business plan.

The article reviews the technology and the advantages and disadvantages of combining the technology with regulatory law. It then informs the discussion from a broader public law perspective. It analyses regulatory technology through criteria developed in the mainstream regulatory discourse. It contributes to that discourse by anticipating problems that will arise as the technology evolves. In addition, the hope is to assist the government in avoiding mistakes that have occurred in the past and creating a better system from the start…(More)”.

Making a 21st Century Constitution: Playing Fair in Modern Democracies

Curated on Posted on by Stefaan Verhulst
Making a 21st Century Constitution

Book by Frank Vibert: “Democratic constitutions are increasingly unfit for purpose with governments facing increased pressures from populists and distrust from citizens. The only way to truly solve these problems is through reform. Within this important book, Frank Vibert sets out the key challenges to reform, the ways in which constitutions should be revitalised and provides the standards against which reform should be measured…

Democratic governments are increasingly under pressure from populists, and distrust of governmental authority is on the rise. Economic causes are often blamed. Making a 21st Century Constitution proposes instead that constitutions no longer provide the kind of support that democracies need in today’s conditions, and outlines ways in which reformers can rectify this.

Frank Vibert addresses key sources of constitutional obsolescence, identifies the main challenges for constitutional updating and sets out the ways in which constitutions may be made suitable for the the 21st century. The book highlights the need for reformers to address the deep diversity of values in today’s urbanized societies, the blind spots and content-lite nature of democratic politics, and the dispersion of authority among new chains of intermediaries.

This book will be invaluable for students of political science, public administration and policy, law and constitutional economics. Its analysis of how constitutions can be made fit for purpose again will appeal to all concerned with governance, practitioners and reformers alike…(More)”.

The ‘Datasphere’, Data Flows Beyond Control, and the Challenges for Law and Governance

Curated on Posted on by Stefaan Verhulst

Paper by Jean-Sylvestre Bergé, Stephane Grumbach and Vincenzo Zeno-Zencovich: “The flows of people, goods and capital, which have considerably increased in recent history, are leading to crises (e.g., migrants, tax evasion, food safety) which reveal the failure to control them. Much less visible, and not yet included in economic measurements, data flows have increased exponentially in the last two decades, with the digitisation of social and economic activities. A new space – Datasphere – is emerging, mostly supported by digital platforms which provide essential services reaching half of the world’s population directly. Their control over data flows raises new challenges to governance, and increasingly conflicts with public administration.

In this paper, we consider the need and the difficulty of regulating this emerging space and the different approaches followed on both sides of the Atlantic. We distinguish between three situations. We first consider data at rest, which is from the point of view of the location where data are physically stored. We then consider data in motion, and the issues related to their combination. Finally, we investigate data in action, that is data as vectors of command of legal or illegal activities over territories, with impacts on economy and society as well as security, and raise governance challenges.

The notion of ‘Datasphere’ proposes a holistic comprehension of all the ‘information’ existing on earth, originating both in natural and socio-economic systems, which can be captured in digital form, flows through networks, and is stored, processed and transformed by machines. It differs from the ‘Cyberspace’, which is mostly concerned with the networks, the technical instruments (from software and protocols to cables and data centers) together with the social activities it allows, and to what extent they could/should be allowed.

The paper suggests one – out of the many possible – approach to this new world. Clearly it would be impossible to delve in depth into all its facets, which are as many as those of the physical world. Rather, it attempts to present how traditional legal notions could be usefully managed to put order in a highly complex environment, avoiding a piecemeal approach that looks only at details….(More)”.

The Case for Accountability: How it Enables Effective Data Protection and Trust in the Digital Society

Curated on Posted on by Stefaan Verhulst

Centre for Information Policy Leadership: “Accountability now has broad international support and has been adopted in many laws, including in the EU General Data Protection Regulation (GDPR), regulatory policies and organisational practices. It is essential that there is consensus and clarity on the precise meaning and application of organisational accountability among all stakeholders, including organisations implementing accountability and data protection authorities (DPAs) overseeing accountability.

Without such consensus, organisations will not know what DPAs expect of them and DPAs will not know how to assess organisations’ accountability-based privacy programs with any degree of consistency and predictability. Thus, drawing from the global experience with accountability to date and from the Centre for Information Policy Leadership’s (CIPL) own extensive prior work on accountability, this paper seeks to explain the following issues:

  • The concept of organisational accountability and how it is reflected in the GDPR;
  • The essential elements of accountability and how the requirements of the GDPR (and of other normative frameworks) map to these elements;
  • Global acceptance and adoption of accountability;
  • How organisations can implement accountability (including by and between controllers and processors) through comprehensive internal privacy programs that implement external rules or the organisation’s own data protection policies and goals, or through verified or certified accountability mechanisms, such as Binding Corporate Rules (BCR), APEC Cross-Border Privacy Rules (CBPR), APEC Privacy Recognition for Processors (PRP), other seals and certifications, including future GDPR certifications and codes of conduct; and
  • The benefits that accountability can deliver to each stakeholder group.

In addition, the paper argues that accountability exists along a spectrum, ranging from basic accountability requirements required by law (such as under the GDPR) to stronger and more granular accountability measures that may not be required by law but that organisations may nevertheless want to implement because they convey substantial benefits….(More)”.

Regulation by Blockchain: The Emerging Battle for Supremacy between the Code of Law and Code as Law

Curated on Posted on by Stefaan Verhulst

Paper by Karen Yeung at Modern Law Review: “Many advocates of distributed ledger technologies (including blockchain) claim that these technologies provide the foundations for an organisational form that will enable individuals to transact with each other free from the travails of conventional law, thus offering the promise of grassroots democratic governance without the need for third party intermediaries. But does the assumption that blockchain systems will operate beyond the reach of conventional law withstand critical scrutiny?

This is the question which this paper investigates, by examining the intersection and interactions between conventional law promulgated and enforced by national legal systems (ie the ‘code of law’) and the internal rules of blockchain systems which take the form of executable software code and cryptographic algorithms via a distributed computing network (‘code as law’).

It identifies three ways in which the code of law may interact with code as law, based primarily on the intended motives and purposes of those engaged in activities in developing, maintaining or undertaking transactions upon the network, referring to the use of blockchain: (a) with the express intention of evading the substantive limits of the law (‘hostile evasion’); (b) to complement and/or supplement conventional law with the aim of streamlining or enhancing compliance with agreed standards (‘efficient alignment’); and (c) to co-ordinate the actions of multiple participants via blockchain to avoid the procedural inefficiencies and complexities associated with the legal process, including the transaction, monitoring and agency costs associated with conventional law (‘alleviating transactional friction’).

These different classes of case are likely to generate different dynamic interactions between the blockchain code and conventional legal systems, which I describe respectively as ‘cat and mouse’, the ‘joys of (patriarchial) marriage’ and ‘uneasy coexistence and mutual suspicion’ respectively…(More)”.

Digital Switzerlands

Curated on Posted on by Stefaan Verhulst

Paper by Kristen Eichensehr: “U.S. technology companies are increasingly standing as competing power centers that challenge the primacy of governments. This power brings with it the capacity to bolster or undermine governmental authority, as well as increasing public demands for the companies to protect users from governments. The companies’ power raises serious questions about how to understand their role. Scholars have proposed varying conceptions, suggesting that the companies should be understood as public utilities, information fiduciaries, surveillance intermediaries, or speech governors. This Article takes up another possibility, one suggested by the companies themselves: that they are “Digital Switzerlands.”

The companies’ claim to be Digital Switzerlands encompasses two ideas: that the companies are on par with, not subordinate to, the countries that try to regulate them, and that they are in some sense neutral. This Article critically evaluates the plausibility of these claims and explores how the companies differ from other powerful private parties. The Digital Switzerlands concept sheds light on why the companies have begun to resist both the U.S. and foreign governments, but it also means that the companies do not always counter governments. Understanding the relationship between companies, users, and governments as triangular, not purely hierarchical, reveals how alliances among them affect the companies’ behavior toward governments. But the companies’ efforts to maintain a posture of neutrality also carry a risk of passivity that may allow governmental attacks on users to go unchallenged.

Turning to the normative, the Article proposes several considerations for assessing the desirability of having companies be Digital Switzerlands. Does the rise of the companies as competing power centers benefit individual users? Does the companies’ lack of democratic attributes render them illegitimate powers? If the companies claim the benefits of the sovereign analogy, should they also be held to the public law values imposed on governments, and if so, how? And if there is value in the companies acting as Digital Switzerlands, how can this role be entrenched to prevent backsliding? The Article offers preliminary answers to these questions, with the knowledge that the answers may well evolve along with the companies’ self-conception….(More)”.