A Human Rights Perspective on Citizen Participation in the EU's Governance of New Technologies

This article considers the EU’s approach to citizen participation in the governance of new technologies from a human rights perspective. Noting that there is a dearth of insight on the interplay between citizen participation and human rights, the article sketches the essence of its own human rights perspective as being about empowerment. This perspective is brought to bear on EU discourse on citizen participation in the governance of new technologies. Analysis of the discourse—comprising law, citizen participation in EU governance and citizen/science relations, the ‘public understanding of science and technology’, risk and bioethics—reveals a disempowering ‘deficit model’ of citizens in need of education through their participation in governance. The analysis thus suggests that citizen participation in EU governance of new technologies is not truly informed by human rights, but is instead used as a legitimating technique.

‘Supra-stewardship’: A Tool for Citizen Participation in European Union Pandemic Preparedness Planning

This article proposes developing the public bioethics aspect of stewardship and applying it to the EU as ‘supra-stewardship’, a tool for opening a discursive space for citizen participation in EU preparedness planning. With this in mind the article highlights some of the contours for engagement on the boundaries of responsibility and the production of governance distortions and failures brought out by attention to framing, distribution, vulnerability and learning. This should help citizens to tackle the complementary expert and public rationalities that undermine their involvement, contribute supplementary knowledge towards governance, and help promote institutional learning by the EU and resilience.

Regulatory or Regulating Publics? The European Union’s Regulation of Emerging Health Technologies and Citizen Participation

‘Citizen participation’ includes various participatory techniques and is frequently viewed as an unproblematic and important social good when used as part of the regulation of the innovation and implementation of science and technology. This is perhaps especially evident in debates around ‘anticipatory governance’ or ‘upstream engagement’. Here, we interrogate this thesis using the example of the European Union’s regulation of emerging health technologies (such as nanotechnology). In this case, citizen participation in regulatory debate is concerned with innovative objects for medical application that are considered to be emergent or not yet concrete. Through synthesising insights from law, regulatory studies, critical theory, and science and technology studies (STS), we seek to cast new light on the promises, paradoxes and pitfalls of citizen participation as a tool or technology of regulation in itself. As such we aim to generate a new vantage point from which to view the values and sociotechnical imaginaries that are both ‘designed-in’ and ‘designed-out’ of citizen participation. In so doing, we show not only how publics (do not) regulate technologies, but also how citizens themselves are regulated through the techniques of participation. © The Author [2012].

Sustainable Technoscientific Development and the Innovator Citizen

Sustainable development could provide a critical foil for individual
and especially collective reflection on the normative
direction, ends and means employed by societies, particularly
around the economy, its technology and resource-intensive
orientation and configuration with ecosystems. However,
although sustainable development is a constitutional objective
of the EU, its implementation in strategies and policies reveals
a much narrower meaning. By framing sustainable development
as ecological modernisation on the basis of technoscientific
innovation, and by imagining citizens as entrepreneurs in a
knowledge-based European economy, openings for democratic
experimentation and social innovation are limited and even
forestalled. In addition, the disruptive and transformational
potential of citizenship is stymied. Still, sustainable development
has resonance within citizenship and human rights
discourses that provide important resources for the fashioning
of common understanding. These are valuable supplements to
the repertoire of European citizenship that could help to embed
sustainable development in the social fabric and generate
alternative imaginaries and futures of a sustainable Europe.

The rise of the digital citizen-stakeholder: rebalancing multistakeholder governance

The principle feature in the evolution of the internet has been its ever growing reach to include old and young, rich and poor. The internet’s ever encroaching presence has transported it from our desktop to our pocket and into our glasses. This is illustrated in the Internet Society Questionnaire on Multistakeholder Governance, which found the main factors affecting change in the Internet governance landscape were more users online from more countries and the influence of the internet over daily life. The omnipresence of the internet is self- perpetuating; its usefulness grows with every new user and every new piece of data uploaded. The advent of social media and the creation of a virtual presence for each of us, even when we are not physically present or ‘logged on’, means we are fast approaching the point where we are all connected, to everyone else, all the time. We have moved far beyond the point where governments can claim to represent our views which evolve constantly rather than being measured in electoral cycles.
The shift, which has seen citizens as creators of content rather than consumers of it, has undermined the centralist view of democracy and created an environment of wiki democracy or crowd sourced democracy. This is at the heart of what is generally known as Web 2.0, and widely considered to be a positive, democratising force. However, we argue, there are worrying elements here too. Government does not always deliver on the promise of the networked society as it involves citizens and others in the process of government. Also a number of key internet companies have emerged as powerful intermediaries harnessing the efforts of the many, and re- using and re-selling the products and data of content providers in the Web 2.0 environment. A discourse about openness and transparency has been offered as a democratising rationale but much of this masks an uneven relationship where the value of online activity flows not to the creators of content but to those who own the channels of communication and the metadata that they produce.
In this context the state is just one stakeholder in the mix of influencers and opinion formers impacting on our behaviours, and indeed our ideas of what is public. The question of what it means to create or own something, and how all these new relationships to be ordered and governed are subject to fundamental change. While government can often appear slow, unwieldy and even irrelevant in much of this context, there remains a need for some sort of political control to deal with the challenges that technology creates but cannot by itself control. In order for the internet to continue to evolve successfully both technically and socially it is critical that the multistakeholder nature of internet governance be understood and acknowledged, and perhaps to an extent, re- balanced. Stakeholders can no longer be classified in the broad headings of government, private sector and civil society, and their roles seen as some sort of benign and open co-production. Each user of the internet has a stake in its efficacy and each by their presence and participation is contributing to the experience, positive or negative of other users as well as to the commercial success or otherwise of various online service providers. However stakeholders have neither an equal role nor an equal share. The unequal relationship between the providers of content and those who simple package up and transmit that content - while harvesting the valuable data thus produced - needs to be addressed. Arguably this suggests a role for government that involves it moving beyond simply celebrating and facilitating the on- going technological revolution. This paper reviews the shifting landscape of stakeholders and their contribution to the efficacy of the internet. It will look to critically evaluate the primacy of the individual as the key stakeholder and their supposed developing empowerment within the ever growing sea of data. It also looks at the role of individuals in wider governance roles. Governments in a number of jurisdictions have sought to engage, consult or empower citizens through technology but in general these attempts have had little appeal. Citizens have been too busy engaging, consulting and empowering each other to pay much attention to what their governments are up to. George Orwell’s view of the future has not come to pass; in fact the internet has insured the opposite scenario has come to pass. There is no big brother but we are all looking over each other’s shoulder all the time, while at the same time a number of big corporations are capturing and selling all this collective endeavour back to us.

Combining and integrating life /social sciences and citizen trainers in Nurse Education - a N. Ireland initiative

Before commencement of the academic year 2012/2013 the social sciences, public health and the biomedical sciences were taught to separate modules. This reinforced the idea off separate disciplines certainly for some of the younger students and a failure to appreciate the interconnectedness (whole person) perspective on health; separately modules taught and assessed in separate silos. There was limited understanding by the lecturers of the other areas that they were not teaching to -reflecting perhaps a dis-coordinated approach to health sciences (Mason and Whitehead 2003). As a result of significant discussion and interdisciplinary negotiation the life, social sciences public health/ health education were drawn together in the one module for the academic year 2012/13. The module provides the undergraduate students with an introduction to an understanding of Life Sciences, psychology, sociology and public health and their contribution within the context of nursing and midwifery. Each week’s teaching seeks to reflect against the other module delivered in first year - addressing clinical skills. The teaching is developing innovative e-learning approaches, including the use of a virtual community. The intention is to provide the student with a more integrated understanding and teaching to the individual’s health and to health within a social context (Lin 2001; Iles- Shih 2011). The focus is on health promotion rather than disease management. The module runs in three phases across the student’s first-year and teachers to the field of adult mental health, learning disability, children’s nursing and the midwifery students -progressively building on the student’s clinical experience. The predominant focus of the module remains on health and reflecting aspects of life and social life within N. Ireland. One of the particular areas of interest and an area of particular sensitivity is engaging the students to the context of the Northern Ireland civil unrest (the Troubles); this involves a co-educational initiative with service users, only previously attempted with social work students (Duffy 2012). The service users are represented by WAVE an organisation offering care and support to bereaved, traumatised or injured as a result of the violent civil conflict `the Troubles’. The `Troubles’ had ranged over an extended period and apart from the more evident and visual impact of death and injury, the community is marked by a disproportionate level of civil unrest, the extremes of bereavement, imprisonment, displacement antisocial behaviour and family dysfunction (Coulter et al. 2012). As co-educators with the School of Nursing and Midwifery, WAVE deliver a core lecture (augmented by online material), then followed by tutorials. The tutorials are substantially led by those who had been involved with and experienced loss and trauma as a result of the conflict (Health Service users) as `citizen trainers’ and provide an opportunity for them to share their experience and their recollection of personal interaction with nursing and midwifery students; in improving their understanding of the impact of `The Troubles’ on patients and clients affected by the events (Coulter et al. 2012) and to help better provide a quality of care cognisant of the particular needs of those affected by `the Troubles’ in N.Ireland. This approach is relatively unique to nursing in N. Ireland in that it involves many of those directly involved with and injured by the `Troubles’ as `citizen trainers’ and clearly reflects the School’s policy of progressively engaging with users and carers of nursing and midwifery services as co-educators to students (Repper & Breeze 2006). Only now could perhaps such a sensitive level of training to student nurses and midwives be delivered across communities with potential educative lessons for other communities experiencing significant civil unrest and sectarian conflict.