Paper by M. Woods et al: “Citizens’ Observatories (COs) seek to extend conventional citizen science activities to scale up the potential of citizen sensing for environmental monitoring and creation of open datasets, knowledge and action around environmental issues, both local and global. The GROW CO has connected the planetary dimension of satellites with the hyperlocal context of farmers and their soil. GROW has faced three main interrelated challenges associated with each of the three core audiences of the observatory, namely citizens, scientists and policy makers: one is sustained citizen engagement, quality assurance of citizen-generated data and the challenge to move from data to action in practice and policy. We discuss how each of these challenges were overcome and gave way to the following related project outputs: 1) Contributing to satellite validation and enhancing the collective intelligence of GEOSS 2) Dynamic maps and visualisations for growers, scientists and policy makers 3) Social-technical innovations data art…(More)”.
We Need a Fourth Branch of Government
George A. Papandreou at The New York Times: “In ancient times, politics was born of the belief that we can be masters of our own fate, and democracy became a continuing, innovative project to guarantee people a say in public decisions.
Today, however, we live in a paradox. Humanity has created vast wealth and technological know-how that could contribute to solutions for the global common good, yet immense numbers of people are disempowered, marginalized and suffering from a deep sense of insecurity. Working together, we have the ability to reshape the world as we know it. Unfortunately, that power rests in the hands of only a few.
The marginalization we see today is rooted in the globalization promoted by policy models such as the Washington Consensus, which distanced politics and governance from economic power. Companies in the financial, pharmaceutical, agricultural, oil and tech industries are no longer governed by the laws of a single state — they live in a separate global stratosphere, one regulated to suit their interests.
The consequences of all this are huge disparities in wealth and power. There is, for example, an overconcentration of money in media and politics, due to lobbying and outright corruption. And in many countries, democratic institutions have been captured and the will of the people has been compromised….
We could embrace reactive politics, elect authoritarian leaders, build walls, and promote isolationism and racism. This path offers a simple yet illusory way to “take back control,” but in fact accomplishes the opposite: It gives up control to power-hungry demagogues who divide us, weaken civil society and feed us dead-end solutions.
But rather than embrace those false promises, let us instead reinvent and deepen democratic institutions, in order to empower people, tame global capitalism, eliminate inequality and assert control over our international techno-society.
From my experience, an important step toward these goals would be to create a fourth branch of government.
This new deliberative branch, in which all citizens — the “demos” — could participate, would sit alongside the executive, legislative and judicial branches. All laws and decisions would first go through an e-deliberation process before being debated in our city halls, parliaments or congresses.
Inspired by the agora of ideas and debate in ancient Athens, I set up as prime minister a rudimentary “wiki-law” process for deliberating issues online before laws are voted on. Trusting collective wisdom brought insightful and invaluable responses.
In contrast to how social media works today, a similar platform could develop transparent algorithms that use artificial intelligence to promote wholesome debate and informed dialogue while fairly aggregating citizens’ positions to promote consensus building. All who participate in this public e-agora would appear under their true identities — real voices, not bots. Eponymous, not anonymous.
To facilitate debate, forums of professionals could give informed opinions on issues of the day. Public television, newspapers, radio and podcasts could enlighten the conversation. Schools would be encouraged to participate. So-called deliberative polling (again inspired by ancient Athens and developed for modern society by James Fishkin at Stanford University) could improve decision-making by leveraging sustained dialogue among polling participants and experts to produce more informed public opinion. The concept was used by the Citizens’ Assembly in Ireland from 2016 to 2018, a riveting exercise in deliberative democracy that produced breakthroughs on seemingly intractable issues such as abortion.
Today, we are on the verge of momentous global changes, in robotics, A.I., the climate and more. The world’s citizens must debate the ethical implications of our increasingly godlike technological powers….(More)”
Why policy networks don’t work (the way we think they do)
Blog by James Georgalakis: “Is it who you know or what you know? The literature on evidence uptake and the role of communities of experts mobilised at times of crisis convinced me that a useful approach would be to map the social network that emerged around the UK-led mission to Sierra Leone so it could be quantitatively analysed. Despite the well-deserved plaudits for my colleagues at IDS and their partners in the London School of Hygiene and Tropical Medicine, the UK Department for International Development (DFID), the Wellcome Trust and elsewhere, I was curious to know why they had still met real resistance to some of their policy advice. This included the provision of home care kits for victims of the virus who could not access government or NGO run Ebola Treatment Units (ETUs).
It seemed unlikely these challenges were related to poor communications. The timely provision of accessible research knowledge by the Ebola Response Anthropology Platform has been one of the most celebrated aspects of the mobilisation of anthropological expertise. This approach is now being replicated in the current Ebola response in the Democratic Republic of Congo (DRC). Perhaps the answer was in the network itself. This was certainly indicated by some of the accounts of the crisis by those directly involved.
Social network analysis
I started by identifying the most important looking policy interactions that took place between March 2014, prior to the UK assuming leadership of the Sierra Leone international response and mid-2016, when West Africa was finally declared Ebola free. They had to be central to the efforts to coordinate the UK response and harness the use of evidence. I then looked for documents related to these events, a mixture of committee minutes, reports and correspondence , that could confirm who was an active participant in each. This analysis of secondary sources related to eight separate policy processes and produced a list of 129 individuals. However, I later removed a large UK conference that took place in early 2016 at which learning from the crisis was shared. It appeared that most delegates had no significant involvement in giving policy advice during the crisis. This reduced the network to 77….(More)”.
Information Wars: How We Lost the Global Battle Against Disinformation and What We Can Do About It
Book by Richard Stengel: “Disinformation is as old as humanity. When Satan told Eve nothing would happen if she bit the apple, that was disinformation. But the rise of social media has made disinformation even more pervasive and pernicious in our current era. In a disturbing turn of events, governments are increasingly using disinformation to create their own false narratives, and democracies are proving not to be very good at fighting it.
During the final three years of the Obama administration, Richard Stengel, the former editor of Time and an Under Secretary of State, was on the front lines of this new global information war. At the time, he was the single person in government tasked with unpacking, disproving, and combating both ISIS’s messaging and Russian disinformation. Then, in 2016, as the presidential election unfolded, Stengel watched as Donald Trump used disinformation himself, weaponizing the grievances of Americans who felt left out by modernism. In fact, Stengel quickly came to see how all three players had used the same playbook: ISIS sought to make Islam great again; Putin tried to make Russia great again; and we all know about Trump.
In a narrative that is by turns dramatic and eye-opening, Information Wars walks readers through of this often frustrating battle. Stengel moves through Russia and Ukraine, Saudi Arabia and Iraq, and introduces characters from Putin to Hillary Clinton, John Kerry and Mohamed bin Salman to show how disinformation is impacting our global society. He illustrates how ISIS terrorized the world using social media, and how the Russians launched a tsunami of disinformation around the annexation of Crimea – a scheme that became the model for their interference with the 2016 presidential election. An urgent book for our times, Information Wars stresses that we must find a way to combat this ever growing threat to democracy….(More)”.
Algorithmic Impact Assessments under the GDPR: Producing Multi-layered Explanations
Paper by Margot E. Kaminski and Gianclaudio Malgieri: “Policy-makers, scholars, and commentators are increasingly concerned with the risks of using profiling algorithms and automated decision-making. The EU’s General Data Protection Regulation (GDPR) has tried to address these concerns through an array of regulatory tools. As one of us has argued, the GDPR combines individual rights with systemic governance, towards algorithmic accountability. The individual tools are largely geared towards individual “legibility”: making the decision-making system understandable to an individual invoking her rights. The systemic governance tools, instead, focus on bringing expertise and oversight into the system as a whole, and rely on the tactics of “collaborative governance,” that is, use public-private partnerships towards these goals. How these two approaches to transparency and accountability interact remains a largely unexplored question, with much of the legal literature focusing instead on whether there is an individual right to explanation.
The GDPR contains an array of systemic accountability tools. Of these tools, impact assessments (Art. 35) have recently received particular attention on both sides of the Atlantic, as a means of implementing algorithmic accountability at early stages of design, development, and training. The aim of this paper is to address how a Data Protection Impact Assessment (DPIA) links the two faces of the GDPR’s approach to algorithmic accountability: individual rights and systemic collaborative governance. We address the relationship between DPIAs and individual transparency rights. We propose, too, that impact assessments link the GDPR’s two methods of governing algorithmic decision-making by both providing systemic governance and serving as an important “suitable safeguard” (Art. 22) of individual rights….(More)”.
Risk identification and management for the research use of government administrative data
Paper by Elizabeth Shepherd, Anna Sexton, Oliver Duke-Williams, and Alexandra Eveleigh: “Government administrative data have enormous potential for public and individual benefit through improved educational and health services to citizens, medical research, environmental and climate interventions and exploitation of scarce energy resources. Administrative data is usually “collected primarily for administrative (not research) purposes by government departments and other organizations for the purposes of registration, transaction and record keeping, during the delivery of a service” such as health care, vehicle licensing, tax and social security systems (https://esrc.ukri.org/funding/guidance-for-applicants/research-ethics/useful-resources/key-terms-glossary/). Administrative data are usually distinguished from data collected for statistical use such as the census. Unlike administrative records, they do not provide evidence of activities and generally lack metadata and context relating to provenance. Administrative data, unlike open data, are not routinely made open or accessible, but access can be provided only on request to named researchers for specified research projects through research access protocols that often take months to negotiate and are subject to significant constraints around re-use such as the use of safe havens. Researchers seldom make use of freedom of information or access to information protocols to access such data because they need specific datasets and particular levels of granularity and an ability to re-process data, which are not made generally available. This study draws on research undertaken by the authors as part of the Administrative Data Research Centre in England (ADRC-E). The research examined perspectives on the sharing, linking and re-use (secondary use) of administrative data in England, viewed through three analytical themes: trust, consent and risk. This study presents the analysis of the identification and management of risk in the research use of government administrative data and presents a risk framework. Risk management (i.e. coordinated activities that allow organizations to control risks, Lemieux, 2010) enables us to think about the balance between risk and benefit for the public good and for other stakeholders. Mitigating activities or management mechanisms used to control the identified risks depend on the resources available to implement the options, on the risk appetite or tolerance of the community and on the cost and likely effectiveness of the mitigation. Mitigation and risk do not work in isolation and should be holistically viewed by keeping the whole information infrastructure in balance across the administrative data system and between multiple stakeholders.
This study seeks to establish a clearer picture of risk with regard to government administrative data in England. It identifies and categorizes the risks arising from the research use of government administrative data. It identifies mitigating risk management activities, linked to five key stakeholder communities and discusses the locus of responsibility for risk management actions. The identification of the risks and of mitigation strategies is derived from the viewpoints of the interviewees and associated documentation; therefore, they reflect their lived experience. The five stakeholder groups identified from the data are as follows: individual researchers; employers of researchers; wider research community; data creators and providers and data subjects and the broader public. The primary sections of the study, following the methodology and research context, set out the seven identified types of risk events in the research use of administrative data, present a stakeholder mapping of the communities in this research affected by the risks and discuss the findings related to managing and mitigating the risks identified. The conclusion presents the elements of a new risk framework to inform future actions by the government data community and enable researchers to exploit the power of administrative data for public good….(More)”.
Index: Secondary Uses of Personal Data
By Alexandra Shaw, Andrew Zahuranec, Andrew Young, Stefaan Verhulst
The Living Library Index–inspired by the Harper’s Index–provides important statistics and highlights global trends in governance innovation. This installment focuses on public perceptions regarding secondary uses of personal data (or the re-use of data initially collected for a different purpose). It provides a summary of societal perspectives toward personal data usage, sharing, and control. It is not meant to be comprehensive–rather, it intends to illustrate conflicting, and often confusing, attitudes toward the re-use of personal data.
Please share any additional, illustrative statistics on data, or other issues at the nexus of technology and governance, with us at [email protected]
Data ownership and control
- Percentage of Americans who say it is “very important” they control information collected about them: 74% – 2016
- Americans who think that today’s privacy laws are not good enough at protecting people’s privacy online: 68% – 2016
- Americans who say they have “a lot” of control over how companies collect and use their information: 9% – 2015
- In a survey of 507 online shoppers, the number of respondents who indicated they don’t want brands tracking their location: 62% – 2015
- In a survey of 507 online shoppers, the amount who “prefer offers that are targeted to where they are and what they are doing:” 60% – 2015
- Number of surveyed American consumers willing to provide data to corporations under the following conditions:
- “Data about my social concerns to better connect me with non-profit organizations that advance those causes:” 19% – 2018
- “Data about my DNA to help me uncover any hereditary illnesses:” 21% – 2018
- “Data about my interests and hobbies to receive relevant information and offers from online sellers:” 32% – 2018
- “Data about my location to help me find the fastest route to my destination:” 40% – 2018
- “My email address to receive exclusive offers from my favorite brands:” 56% – 2018
Consumer Attitudes
- Academic study participants willing to donate personal data to research if it could lead to public good: 60% – 2014
- Academic study participants willing to share personal data for research purposes in the interest of public good: 25% – 2014
- Percentage who expect companies to “treat [them] like an individual, not as a member of some segment like ‘millennials’ or ‘suburban mothers:’” 74% – 2018
- Percentage who believe that brands should understand a “consumer’s individual situation (e.g. marital status, age, location, etc.)” when they’re being marketed to: 70% – 2018 Number who are “more annoyed” by companies now compared to 5 years ago: 40% – 2018Percentage worried their data is shared across companies without their permission: 88% – 2018Amount worried about a brand’s ability to track their behavior while on the brand’s website, app, or neither: 75% – 2018
- Consumers globally who expect brands to anticipate needs before they arise: 33% – 2018
- Surveyed residents of the United Kingdom who identify as:
- “Data pragmatists” willing to share personal data “under the right circumstances:” 58% – 2017
- “Fundamentalists,” who would not share personal data for better services: 24% – 2017
- Respondents who think data sharing is part of participating in the modern economy: 62% – 2018
- Respondents who believe that data sharing benefits enterprises more than consumers: 75% – 2018
- People who want more control over their data that enterprises collect: 84% – 2018
- Percentage “unconcerned” about personal data protection: 18% – 2018
- Percentage of Americans who think that government should do more to regulate large technology companies: 55% – 2018
- Registered American voters who trust broadband companies with personal data “a great deal” or “a fair amount”: 43% – 2017
- Americans who report experiencing a major data breach: 64% – 2017
- Number of Americans who believe that their personal data is less secure than it was 5 years ago: 49% – 2019
- Amount of surveyed American citizens who consider trust in a company an important factor for sharing data: 54% – 2018
Convenience
Microsoft’s 2015 Consumer Data Value Exchange Report attempts to understand consumer attitudes on the exchange of personal data across the global markets of Australia, Brazil, Canada, Colombia, Egypt, Germany, Kenya, Mexico, Nigeria, Spain, South Africa, United Kingdom and the United States. From their survey of 16,500 users, they find:
- The most popular incentives for sharing data are:
- Respondents who would prefer to see more ads to get new services: 34% – 2015
- Respondents willing to share search terms for a service that enabled fewer steps to get things done: 70% – 2015
- Respondents willing to share activity data for such an improvement: 82% – 2015
- Respondents willing to share their gender for “a service that inspires something new based on others like them:” 79% – 2015
A 2015 Pew Research Center survey presented Americans with several data-sharing scenarios related to convenience. Participants could respond: “acceptable,” “it depends,” or “not acceptable” to the following scenarios:
- Share health information to get access to personal health records and arrange appointments more easily:
- Share data for discounted auto insurance rates:
- Share data for free social media services:
- Share data on smart thermostats for cheaper energy bills:
Other Studies
- Surveyed banking and insurance customers who would exchange personal data for:
- Surveyed banking and insurance customers willing to share data specifically related to income, location and lifestyle habits to:
- In a survey of over 7,000 members of the public around the globe, respondents indicated:
- They thought “smartphone and tablet apps used for navigation, chat, and news that can access your contacts, photos, and browsing history” is “creepy;” 16% – 2016
- Emailing a friend about a trip to Paris and receiving advertisements for hotels, restaurants and excursions in Paris is “creepy:” 32% – 2016
- A free fitness-tracking device that monitors your well-being and sends a monthly report to you and your employer is “creepy:” 45% – 2016
- A telematics device that allows emergency services to track your vehicle is “creepy:” 78% – 2016
- The number of British residents who do not want to work with virtual agents of any kind: 48% – 2017
- Americans who disagree that “if companies give me a discount, it is a fair exchange for them to collect information about me without my knowing”: 91% – 2015
Data Brokers, Intermediaries, and Third Parties
- Americans who consider it acceptable for a grocery store to offer a free loyalty card in exchange for selling their shopping data to third parties: 47% – 2016
- Number of people who know that “searches, site visits and purchases” are reviewed without consent: 55% – 2015
- The number of people in 1991 who wanted companies to ask them for permission first before collecting their personal information and selling that data to intermediaries: 93% – 1991
- Number of Americans who “would be very concerned if the company at which their data were stored sold it to another party:” 90% – 2008
- Percentage of Americans who think it’s unacceptable for their grocery store to share their shopping data with third parties in exchange for a free loyalty card: 32% – 2016
- Percentage of Americans who think that government needs to do more to regulate advertisers: 64% – 2016
- Registered American voters who are “somewhat uncomfortable” or “very uncomfortable” with companies like Internet service providers or websites using personal data to recommend stories, articles, or videos: 56% – 2017
- Registered American voters who are “somewhat uncomfortable” or “very uncomfortable” with companies like Internet service providers or websites selling their personal information to third parties for advertising purposes: 64% – 2017
Personal Health Data
The Robert Wood Johnson Foundation’s 2014 Health Data Exploration Project Report analyzes attitudes about personal health data (PHD). PHD is self-tracking data related to health that is traceable through wearable devices and sensors. The three major stakeholder groups involved in using PHD for public good are users, companies that track the users’ data, and researchers.
- Overall Respondents:
- Percentage who believe anonymity is “very” or “extremely” important: 67% – 2014
- Percentage who “probably would” or “definitely would” share their personal data with researchers: 78% – 2014
- Percentage who believe that they own—or should own—all the data about them, even when it is indirectly collected: 54% – 2014
- Percentage who think they share or ought to share ownership with the company: 30% – 2014
- Percentage who think companies alone own or should own all the data about them: 4% – 2014
- Percentage for whom data ownership “is not something I care about”: 13% – 2014
- Percentage who indicated they wanted to own their data: 75% – 2014
- Percentage who would share data only if “privacy were assured:” 68% – 2014
- People who would supply data regardless of privacy or compensation: 27% – 2014
- Percentage of participants who mentioned privacy, anonymity, or confidentiality when asked under what conditions they would share their data: 63% – 2014
- Percentage who would be “more” or “much more” likely to share data for compensation: 56% – 2014
- Percentage who indicated compensation would make no difference: 38% – 2014
- Amount opposed to commercial or profit-making use of their data: 13% – 2014
- Percentage of people who would only share personal health data with a guarantee of:
- Surveyed Researchers:
- Percentage who agree or strongly agree that self-tracking data would help provide more insights in their research: 89% – 2014
- Percentage who say PHD could answer questions that other data sources could not: 95% – 2014
- Percentage who have used public datasets: 57% – 2014
- Percentage who have paid for data for research: 19% – 2014
- Percentage who have used self-tracking data before for research purposes: 46% – 2014
- Percentage who have worked with application, device, or social media companies: 23% – 2014
- Percentage who “somewhat disagree” or “strongly disagree” there are barriers that cannot be overcome to using self-tracking data in their research: 82% – 2014
SOURCES:
“2019 Accenture Global Financial Services Consumer Study: Discover the Patterns in Personality”, Accenture, 2019.
“Americans’ Views About Data Collection and Security”, Pew Research Center, 2015.
“Data Donation: Sharing Personal Data for Public Good?”, ResearchGate, 2014.
“Data privacy: What the consumer really thinks,” Acxiom, 2018.
“Exclusive: Public wants Big Tech regulated”, Axios, 2018.
“Consumer data value exchange,” Microsoft, 2015.
“Crossing the Line: Staying on the right side of consumer privacy,” KPMG International Cooperative, 2016.
“How do you feel about the government sharing our personal data? – livechat”, The Guardian, 2017.
“Personal data for public good: using health information in medical research”, The Academy of Medical Sciences, 2006.
“Personal Data for the Public Good: New Opportunities to Enrich Understanding of Individual and Population Health”, Robert Wood Johnson Foundation, Health Data Exploration Project, Calit2, UC Irvine and UC San Diego, 2014.
“Pew Internet and American Life Project: Cloud Computing Raises Privacy Concerns”, Pew Research Center, 2008.
“Poll: Little Trust That Tech Giants Will Keep Personal Data Private”, Morning Consult & Politico, 2017.
“Privacy and Information Sharing”, Pew Research Center, 2016.
“Privacy, Data and the Consumer: What US Thinks About Sharing Data”, MarTech Advisor, 2018.
“Public Opinion on Privacy”, Electronic Privacy Information Center, 2019.
“Selligent Marketing Cloud Study Finds Consumer Expectations and Marketer Challenges are Rising in Tandem”, Selligent Marketing Cloud, 2018.
“The Data-Sharing Disconnect: The Impact of Context, Consumer Trust, and Relevance in Retail Marketing,” Boxever, 2015.
“Microsoft Research reveals understanding gap in the brand-consumer data exchange,” Microsoft Research, 2015.
“Survey: 58% will share personal data under the right circumstances”, Marketing Land: Third Door Media, 2019.
“The state of privacy in post-Snowden America”, Pew Research Center, 2016.
The Tradeoff Fallacy: How Marketers Are Misrepresenting American Consumers And Opening Them Up to Exploitation”, University of Pennsylvania, 2015.
Why data from companies should be a common good
Paula Forteza at apolitical: “Better planning of public transport, protecting fish from intensive fishing, and reducing the number of people killed in car accidents: for these and many other public policies, data is essential.
Data applications are diverse, and their origins are equally numerous. But data is not exclusively owned by the public sector. Data can be produced by private actors such as mobile phone operators, as part of marine traffic or by inter-connected cars to give just a few examples.
The awareness around the potential of private data is increasing, as the proliferation of data partnerships between companies, governments, local authorities show. However, these partnerships represent only a very small fraction of what could be done.
The opening of public data, meaning that public data is made freely available to everyone, has been conducted on a wide scale in the last 10 years, pioneered by the US and UK, soon followed by France and many other countries. In 2015, France took a first step, as the government introduced the Digital Republic Bill which made data open by default and introduced the concept of public interest data. Due to a broad definition and low enforcement, the opening of private sector data is, nevertheless, still lagging behind.
The main arguments for opening private data are that it will allow better public decision-making and it could trigger a new way to regulate Big Tech. There is, indeed, a strong economic case for data sharing, because data is a non-rival good: the value of data does not diminish when shared. On the contrary, new uses can be designed and data can be enriched by aggregation, which could improve innovation for start-ups….
Why Europe needs a private data act
Data hardly knows any boundaries.
Some states are opening like France did in 2015 by creating a framework for “public interest data,” but the absence of a common international legal framework for private data sharing is a major obstacle to its development. To scale up, a European Private Data Act is needed.
This framework must acknowledge the legitimate interest of the private companies that collect and control data. Data can be their main source of income or one they are wishing to develop, and this must be respected. Trade secrecy has to be protected too: data sharing is not open data.
Data can be shared to a limited and identified number of partners and it does not always have to be free. Yet private interest must be aligned with the public good. The European Convention on Human Rights and the European Charter of Fundamental Rights acknowledge that some legitimate and proportional limitations can be set to the freedom of enterprise, which gives everyone the right to pursue their own profitable business.
The “Private Data Act” should contain several fundamental data sharing principles in line with those proposed by the European Commission in 2018: proportionality, “do no harm”, full respect of the GDPR, etc. It should also include guidelines on which data to share, how to appreciate the public interest, and in which cases data should be opened for free or how the pricing should be set.
Two methods can be considered:
- Defining high-value datasets, as it has been done for public data in the recent Open Data Directive, in areas like mobile communications, banking, transports, etc. This method is strong but is not flexible enough.
- Alternatively, governments might define certain “public interest projects”. In doing so, governments could get access to specific data that is seen as a prerequisite to achieve the project. For example, understanding why there is a increasing mortality among bees, requires various data sources: concrete data on bee mortality from the beekeepers, crops and the use of pesticides from the farmers, weather data, etc. This method is more flexible and warrants that only the data needed for the project is shared.
Going ahead on open data and data sharing should be a priority for the upcoming European Commission and Parliament. Margrethe Vestager has been renewed as Competition Commissioner and Vice-President of the Commission and she already mentioned the opportunity to define access to data for newcomers in the digital market.
Public interest data is a new topic on the EU agenda and will probably become crucial in the near future….(More)”.
Bottom-up data Trusts: disturbing the ‘one size fits all’ approach to data governance
Sylvie Delacroix and Neil D Lawrence at International Data Privacy Law: “From the friends we make to the foods we like, via our shopping and sleeping habits, most aspects of our quotidian lives can now be turned into machine-readable data points. For those able to turn these data points into models predicting what we will do next, this data can be a source of wealth. For those keen to replace biased, fickle human decisions, this data—sometimes misleadingly—offers the promise of automated, increased accuracy. For those intent on modifying our behaviour, this data can help build a puppeteer’s strings. As we move from one way of framing data governance challenges to another, salient answers change accordingly. Just like the wealth redistribution way of framing those challenges tends to be met with a property-based, ‘it’s our data’ answer, when one frames the problem in terms of manipulation potential, dignity-based, human rights answers rightly prevail (via fairness and transparency-based answers to contestability concerns). Positive data-sharing aspirations tend to be raised within altogether different conversations from those aimed at addressing the above concerns. Our data Trusts proposal challenges these boundaries.
This article proceeds from an analysis of the very particular type of vulnerability concomitant with our ‘leaking’ data on a daily basis, to show that data ownership is both unlikely and inadequate as an answer to the problems at stake. We also argue that the current construction of top-down regulatory constraints on contractual freedom is both necessary and insufficient. To address the particular type of vulnerability at stake, bottom-up empowerment structures are needed. The latter aim to ‘give a voice’ to data subjects whose choices when it comes to data governance are often reduced to binary, ill-informed consent. While the rights granted by instruments like the GDPR can be used as tools in a bid to shape possible data-reliant futures—such as better use of natural resources, medical care, etc, their exercise is both demanding and unlikely to be as impactful when leveraged individually. As a bottom-up governance structure that is uniquely capable of taking into account the vulnerabilities outlined in the first section, we highlight the constructive potential inherent in data Trusts. This potential crosses the traditional boundaries between individualist protection concerns on one hand and collective empowerment aspirations on the other.
The second section explains how the Trust structure allows data subjects to choose to pool the rights they have over their personal data within the legal framework of a data Trust. It is important that there be a variety of data Trusts, arising out of a mix of publicly and privately funded initiatives. Each Trust will encapsulate a particular set of aspirations, reflected in the terms of the Trust. Bound by a fiduciary obligation of undivided loyalty, data trustees will exercise the data rights held under the Trust according to its particular terms. In contrast to a recently commissioned report,1 we explain why data can indeed be held in a Trust, and why the extent to which certain kinds of data may be said to give rise to property rights is neither here nor there as far as our proposal is concerned. What matters, instead, is the extent to which regulatory instruments such as the GDPR confer rights, and for what kind of data. The breadth of those rights will determine the possible scope of data Trusts in various jurisdictions.
Our ‘Case Studies’ aim to illustrate the complementarity of our data Trusts proposal with the legal provisions pertaining to different kinds of personal data, from medical, genetic, financial, and loyalty card data to social media feeds. The final section critically considers a variety of implementation challenges, which range from Trust Law’s cross-jurisdictional aspects to uptake and exit procedures, including issues related to data of shared provenance. We conclude by highlighting the way in which an ecosystem of data Trusts addresses ethical, legal, and political needs that are complementary to those within the reach of regulatory interventions such as the GDPR….(More)”.
Citizens’ voices for better health and social policies
Olivia Biermann et al at PLOS Blog Speaking of Medicine: “Citizen engagement is important to make health and social policies more inclusive and equitable, and to contribute to learning and responsive health and social systems. It is also valuable in understanding the complexities of the social structure and how to adequately respond to them with policies. By engaging citizens, we ensure that their tacit knowledge feeds into the policy-making process. What citizens know can be valuable in identifying feasible policy options, understanding contextual factors, and putting policies into practice. In addition, the benefit of citizen engagement extends much beyond improving health policy-making processes by making them more participatory and inclusive; being engaged in policy-making processes can build patients’ capacity and empower them to speak up for their own and their families’ health and social needs, and to hold policy-makers accountable. Moreover, apart from being involved in their own care, citizen-patients can contribute to quality improvement, research and education.
Most studies on citizen engagement to date originate from high-income countries. The engagement methods used are not necessarily applicable in low- and middle-income countries, and even the political support, the culture of engagement and established citizen engagement processes might be different. Still, published processes of engaging citizens can be helpful in identifying key components across different settings, e.g. in terms of levels of engagement, communication channels and methods of recruitment. Contextualizing the modes of engagement between and within countries is a must.
Examples of citizen engagement
There are many examples of ad hoc citizen engagement initiatives at local, national and international levels. Participedia, a repository of public participation initiatives around the globe, showcases that the field of citizen engagement is extremely vibrant. In the United Kingdom, the Citizens’ Council of the National Institute for Health and Clinical Excellence (NICE) provides NICE with a public perspective on overarching moral and ethical issues that NICE has to take into account when producing guidance. In the United States of America, the National Issues Forum supports the implementation of deliberative forums on pressing national policy issues. Yet, there are few examples that have long-standing programs of engagement and that engage citizens in evidence-informed policymaking.
A pioneer in engaging citizens in health policy-making processes is the McMaster Health Forum in Hamilton, Canada. The citizens who are invited to engage in a “citizen panel” first receive a pre-circulated, plain-language briefing document to spark deliberation about a pressing health and social-system issue. During the panels, citizens then discuss the problem and its causes, options to address it and implementation considerations. The values that they believe should underpin action to address the issue are captured in a panel summary which is used to inform a policy dialogue on the same topic, also organized by the McMaster Health Forum….(More)”.