Clément Mabi in Réseaux: “This paper posits that digital participatory democracy can be seen as a new anchor of participatory governmentality. Conveniently called “digital democracy”, its implementation contributes to the spread of a particular conception of government through participation, influenced by digital literacy and its principles of self-organization and interactivity. By studying the deployment and trajectory of the so-called “civic tech” movement in France, the aim is to show that the project of democratic openness embodied by the movement has gradually narrowed down to a logic of services, for the purposes of institutions. The “great national debate” triggered a shift in this trajectory. While part of the community complied with the government’s request to facilitate participation, the debate also gave unprecedented visibility to critics who contributed to the emergence of a different view of the role of digital technologies in democracy….(More)“.
European Parliament Think Tank: “Given the central role that online platforms (OPs) play in the digital economy, questions arise about their responsibility in relation to illegal/harmful content or products hosted in the frame of their operation. Against this background, this study reviews the main legal/regulatory challenges associated with OP operations and analyses the incentives for OPs, their users and third parties to detect and remove illegal/harmful and dangerous material, content and/or products. To create a functional classification which can be used for regulatory purposes, it discusses the notion of OPs and attempts to categorise them under multiple criteria. The study then maps and critically assesses the whole range of OP liabilities, taking hard and soft law, self-regulation and national legislation into consideration, whenever relevant. Finally, the study puts forward policy options for an efficient EU liability regime: (i) maintaining the status quo; (ii) awareness-raising and media literacy; (iii)promoting self-regulation; (iv) establishing co-regulation mechanisms and tools; (v) adoptingstatutory legislation; (vi) modifying OPs’ secondaryliability by employing two different models – (a) byclarifying the conditions for liability exemptionsprovided by the e-Commerce Directive or (b) byestablishing a harmonised regime of liability….(More)”.
Nesta Report by Sinead Mac Manus and Alice Clay: “The last decade has seen exponential growth in the amount of data generated, collected and analysed to provide insights across all aspects of industry. Healthcare is no exception. We are increasingly seeing the value of using health and care data to prevent ill health, improve health outcomes for people and provide new insights into disease and treatments.
Bringing together common themes across the existing research, this report sets out two interlinked challenges to building a data-driven health and care system. This is interspersed with best practice examples of the potential of data to improve health and care, as well as cautionary tales of what can happen when this is done badly.
The first challenge we explore is how to increase citizens’ trust and transparency in data sharing. The second challenge is how to unlock the value of health and care data.
We are excited about the role for participatory futures – a set of techniques that systematically engage people to imagine and create more sustainable, inclusive futures – in helping governments and other organisations work with citizens to engage them in debate about their health and care data to build a data-driven health and care system for the benefit of all….(More)”.
Oliver Dowden at the Financial Times: “As you read this, thousands of people are receiving a message that will change their lives: a simple email or text, inviting them to book their Covid jab. But what has powered the UK’s remarkable vaccine rollout isn’t just our NHS, but the data that sits underneath it — from the genetic data used to develop the vaccine right through to the personal health data enabling that “ping” on their smartphone.
After years of seeing data solely through the lens of risk, Covid-19 has taught us just how much we have to lose when we don’t use it.
As I launch the competition to find the next Information Commissioner, I want to set a bold new approach that capitalises on all we’ve learnt during the pandemic, which forced us to share data quickly, efficiently and responsibly for the public good. It is one that no longer sees data as a threat, but as the great opportunity of our time.
Until now, the conversation about data has revolved around privacy — and with good reason. A person’s digital footprint can tell you not just vital statistics like age and gender, but their personal habits.
Our first priority is securing this valuable personal information. The UK has a long and proud tradition of defending privacy, and a commitment to maintaining world-class data protection standards now that we’re outside the EU. That was recognised last week in the bloc’s draft decisions on the ‘adequacy’ of our data protection rules — the agreement that data can keep flowing freely between the EU and UK.
We fully intend to maintain those world-class standards. But to do so, we do not need to copy and paste the EU’s rule book, the General Data Protection Regulation (GDPR), word-for-word. Countries as diverse as Israel and Uruguay have successfully secured adequacy with Brussels despite having their own data regimes. Not all of those were identical to GDPR, but equal doesn’t have to mean the same. The EU doesn’t hold the monopoly on data protection.
So, having come a long way in learning how to manage data’s risks, the UK is going to start making more of its opportunities….(More)”.
Paper by Carolin Martina Rauter, Sabine Wöhlke & Silke Schicktanz: “Personalized medicine (PM) operates with biological data to optimize therapy or prevention and to achieve cost reduction. Associated data may consist of large variations of informational subtypes e.g. genetic characteristics and their epigenetic modifications, biomarkers or even individual lifestyle factors. Present innovations in the field of information technology have already enabled the procession of increasingly large amounts of such data (‘volume’) from various sources (‘variety’) and varying quality in terms of data accuracy (‘veracity’) to facilitate the generation and analyzation of messy data sets within a short and highly efficient time period (‘velocity’) to provide insights into previously unknown connections and correlations between different items (‘value’). As such developments are characteristics of Big Data approaches, Big Data itself has become an important catchphrase that is closely linked to the emerging foundations and approaches of PM. However, as ethical concerns have been pointed out by experts in the debate already, moral concerns by stakeholders such as patient organizations (POs) need to be reflected in this context as well. We used an empirical-ethical approach including a website-analysis and 27 telephone-interviews for gaining in-depth insight into German POs’ perspectives on PM and Big Data. Our results show that not all POs are stakeholders in the same way. Comparing the perspectives and political engagement of the minority of POs that is currently actively involved in research around PM and Big Data-driven research led to four stakeholder sub-classifications: ‘mediators’ support research projects through facilitating researcher’s access to the patient community while simultaneously selecting projects they preferably support while ‘cooperators’ tend to contribute more directly to research projects by providing and implemeting patient perspectives. ‘Financers’ provide financial resources. ‘Independents’ keep control over their collected samples and associated patient-related information with a strong interest in making autonomous decisions about its scientific use. A more detailed terminology for the involvement of POs as stakeholders facilitates the adressing of their aims and goals. Based on our results, the ‘independents’ subgroup is a promising candidate for future collaborations in scientific research. Additionally, we identified gaps in PO’s knowledge about PM and Big Data. Based on these findings, approaches can be developed to increase data and statistical literacy. This way, the full potential of stakeholder involvement of POs can be made accessible in discourses around PM and Big Data….(More)”.
About: “The Copenhagen Manual is a helping hand for those who are in a position to further data-informed strategies for public sector development or have been given the responsibility for preparing, analysing or communicating a survey on public sector innovation.
Like other instruction manuals, the Copenhagen Manual offers examples of use, handy tips and general warnings. The manual discusses setting strategic goals, communication, reaching respondents, adapting the questionnaire and defining public sector innovation.
Internationally comparable data
The manual offers an opportunity to mirror public sector innovation capacity by way of internationally comparable data. The Copenhagen Manual, with emphasis on the ‘open’ in Copenhagen is:
- the result of an open co-creation process that welcomed the participation of all interested parties
- based on the open sharing of a multitude of experiences, good and bad
- open to interpretation, making it usable in different national contexts and open to continuous discussion of added practical experience as actors from more countries conduct surveys on public sector innovation…(More)”.
Policy Brief by Aline Blankertz: “Data about individuals, about their preferences and behaviors, has become an increasingly important resource for companies, public agencies, and research institutions. Consumers carry the burden of having to decide which data about them is shared for which purpose. They want to make sure that data about them is not used to infer intimate details of their private life or to pursue other undesirable purposes. At the same time, they want to benefit from personalized products and innovation driven by the same data. The complexity of how data is collected and used overwhelms consumers, many of whom wearily accept privacy policies and lose trust that those who gain effective control over the data will use it for the consumers’ benefit.
At the same time, a few large companies accumulate and lock in vast amounts of data that enable them to use insights across markets and across consumers. In Europe, the General Data Protection Regulation (GDPR) has given data rights to consumers to assert their interests vis-a-vis those companies, but it gives consumers neither enough information nor enough power to make themselves heard. Other organizations, especially small businesses or start-ups, do not have access to the data (unless individual consumers laboriously exercise their right to portability), which often inhibits competition and innovation. Governments across Europe would like to tackle the challenge of reconciling productive data use with privacy. In recent months, data trusts have emerged as a promising solution to enable data-sharing for the benefit of consumers.
The concept has been endorsed by a broad range of stakeholders, including privacy advocates, companies and expert commissions. In Germany, for example, the data ethics commission and the commission competition law 4.0 have recommended further exploring data trusts, and the government is incorporating the concept into its data strategy.
There is no common understanding yet what consumer data trusts are and what they do. In order for them to address the problems mentioned, it is helpful to use as a working definition: consumer data trusts are intermediaries that aggregate consumers’ interests and represent them vis-à-vis data-using organizations. Data trusts use more technical and legal expertise, as well as greater bargaining power, to negotiate with organizations on the conditions of data use to achieve better outcomes than those that individual consumers can achieve. To achieve their consumer-oriented mission, data trusts should be able to assign access rights, audit data practices, and support enforcement. They may or may not need to hold data…(More)”.
Foreword by Professor Sir Ian Diamond: “I am delighted to introduce the UK Statistics Authority’s new Centre for Applied Data Ethics which we committed to establishing in the UK Statistics Authority’s five-year strategy published last year. Being able to show that researchers, statisticians and analysts have not only considered how they can use data but also how they should use data from an ethical perspective is vital to ensuring public acceptability around the use of data for research and statistical purposes. For this reason, I believe that it is important that as the UK’s national statistical institute, we play a lead role in providing statisticians, researchers and analysts with applied sources of advice, guidance and other tools to help them ensure they use data in ethically appropriate ways. I have therefore established the UK Statistics Authority’s Centre for Applied Data Ethics with the aim of being recognised as world-leaders in the practical application of data ethics for statistics and research.
The new Centre will build on the excellent work of the National Statistician’s Data Ethics Advisory Committee that will continue to provide me with valuable independent data ethics advice and assurance about the collection and use of data for research and statistics.
The significant role the analytical community across Government and beyond has played in informing the response to the ongoing Covid-19 pandemic highlights the importance of using data in new ways to produce timely statistics, research and analysis to inform the important policy questions of the day. Demonstrating how we apply the principles of good data ethics is an important part of this and is a key enabler, and safeguard, to unlock the power of data for better research and statistics for the public good. By focussing our efforts on providing practical data ethics support and guidance to researchers collecting and using data, the Centre for Applied Data Ethics will help the UK Statistics Authority to meet its strategic objectives of producing statistics for the public good to inform the UK, improve lives and build for the future….(More)”.
Paper by James Pow: “There are two important dimensions to the membership of mini-publics that are distinct from the membership of conventional representative institutions: the selection mechanism (sortition) and the profile of the body’s eligible membership (‘ordinary’ citizens). This article examines the effects of these design features on perceived legitimacy. A survey experiment in the deeply divided context of Northern Ireland finds no evidence that variation in mini-public selection features has an overall effect on perceived legitimacy, but there are important individual-level differences….(More)”.
Paper by Sophie Stalla-Bourdillon, Laura Carmichael and Alexsis Wintour: “Independent data stewardship remains a core component of good data governance practice. Yet, there is a need for more robust independent data stewardship models that are able to oversee data-driven, multi-party data sharing, usage and re-usage, which can better incorporate citizen representation, especially in relation to personal data. We propose that data foundations—inspired by Channel Islands’ foundations laws—provide a workable model for good data governance not only in the Channel Islands, but also elsewhere. A key advantage of this model—in addition to leveraging existing legislation and building on established precedent—is the statutory role of the guardian that is a unique requirement in the Channel Islands, and when interpreted in a data governance model provides the independent data steward. The principal purpose for this paper, therefore, is to demonstrate why data foundations are well suited to the needs of data sharing initiatives. We further examine how data foundations could be established in practice—and provide key design principles that should be used to guide the design and development of any data foundation….(More)”.