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].

Infection systems biology:from reactive to proactive (P4) medicine

This short review establishes the conceptual bases and discusses the principal aspects of P4-shorthand for predictive, preventive, personalized and participatory medicine-medicine, in the framework of infectious diseases. P4 medicine is a new way to approach medical care; instead of acting when the patient is sick, physicians will be able to detect early warnings of disease to take early action. Furthermore, people might even be able to adjust their lifestyles to prevent disease. P4 medicine is fuelled by systems approaches to disease, including methods for personalized genome sequencing and new computational techniques for building dynamic disease predictive networks from massive amounts of data from a variety of OMICs. An excellent example of the effectiveness of the P4 medicine approach is the change in cancer treatments. Emphasis is placed on early detection, followed by genotyping of the patient to use the most adequate treatment according to the genetic background. Cardiovascular diseases and perhaps even neurodegenerative disorders will be the next targets for P4 medicine. The application of P4 medicine to infectious diseases is still in its infancy, but is a promising field that will provide much benefit to both the patients and the health-care system.

Evaluating program integration and the rise in collaboration:Case study of a palliative care network

Introduction: There is increasing global interest in using regional palliative care networks (PCNs) to integrate care and create systems that are more costeffective and responsive. We examined a PCN that used a community development approach to build capacity for palliative care in each distinct community in a region of southern Ontario, Canada, with the goal of achieving a competent integrated system. Methods: Using a case study methodology, we examined a PCN at the structural level through a document review, a survey of 20 organizational administrators, and an interview with the network director. Results: The PCN identified 14 distinct communities at different stages of development within the region. Despite the lack of some key features that would facilitate efficient palliative care delivery across these communities, administrators largely viewed the network partnership as beneficial and collaborative. Conclusion: The PCN has attempted to recognize specific needs in each local area. Change Is gradual but participatory. There remain structural issues that may negatively affect the functioning of the PCN.

The link between the learning organisation and curriculum innovation:A comparative study of public and private primary schools in Greece

This article examines the relationship between the learning organisation and the implementation of curriculum innovation within schools. It also compares the extent of innovative activity undertaken by schools in the public and the private sectors. A learning organisation is characterised by long-term goals, participatory decision-making processes, collaboration with external stakeholders, effective mechanisms for the internal communication of knowledge and information, and the use of rewards for its members. These characteristics are expected to promote curriculum innovation, once a number of control factors have been taken into account. The article reports on a study carried out in 197 Greek public and private primary schools in the 1999-2000 school year. Structured interviews with school principals were used as a method of data collection. According to the statistical results, the most important determinants of the innovative activity of a school are the extent of its collaboration with other organisations (i.e. openness to society), and the implementation of development programmes for teachers and parents (i.e. communication of knowledge and information). Contrary to expectations, the existence of long-term goals, the extent of shared decision-making, and the use of teacher rewards had no impact on curriculum innovation. The study also suggests that the private sector, as such, has an additional positive effect on the implementation of curriculum innovation, once a number of human, financial, material, and management resources have been controlled for. The study concludes by making recommendations for future research that would shed more light on unexpected outcomes and would help explore the causal link between variables in the research model.

We Were There:Experiences of women in the Maze and Long Kesh Prison

A feature documentary on the experiences of women in the Maze and Long Kesh Prison

The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.

Gaining ethical approvals to undertake sexual health research with young people in the UK: Applying a 'Children's Rights Based Approach'

This paper (co-written with Dr Maria Lohan, Dr Carmel Kelly & Professor Laura Lundy) will describe the ethical review process to undertake health research in the UK, and explain an approach that can help researchers deal with ethical and methodological dilemmas in their research. Ethical review is necessary to ensure researchers and participants are protected, yet the requirement to ‘pass’ numerous committees may be challenging particularly for health researchers who work with vulnerable groups and sensitive topics. The inclusion of these groups/topics is crucial if health researchers are to understand health disparities and implement appropriate interventions with health benefits for vulnerable populations. It is proposed that to overcome ethical and methodological challenges and pitfalls, researchers must implement strategies that advocate for, and increase the participation of, vulnerable populations in health research. A ‘children’s rights based approach’ using participatory methodology will be described that draws on the jurisprudence of international law, (United Nations Convention on the Rights of the Child, 1989) and provides a framework that may empower ethics committees to carry out their function confidently. The role of the researcher, framed within the context of doctoral level study, will be reviewed in terms of the investment required and benefits of utilising this approach. It will be argued that adopting this approach with vulnerable groups, not only guarantees their meaningful participation in the research process and permits their voices to be heard, but also offers ethics committees an internationally agreed upon legal framework, ratified by their governing States, from which to fulfil their obligations and resolve their ethical dilemmas. Increasing the representation and participation of vulnerable groups in health research can inform the development of health policy and practice based on ‘insider knowledge’ that better engages with and more adequately reflects their specific needs. This is likely to yield numerous health, social and economic benefits for all of society through the delivery of more equitable, effective and sustainable services.

Spiritual capital and democratization in Zimbabwe:A case study of a progressive charismatic congregation

Throughout Africa, charismatic Christianity has been caricatured as an inhibitor of democratization. Its adherents are said either to withdraw from the rough and tumble of politics ('pietism') or to preach a prosperity gospel that encourages believers to pour their resources into their churches in the hope that God will 'bless' them. Both courses of action are said to encourage such people to be politically quietist, with no interest in democratization or other forms of political activity. This is said to thwart democratization. This article utilizes an ethnographic case study of a 'progressive' charismatic congregation in Harare, Zimbabwe, in 2007, to provide evidence that 'pietism' and 'prosperity' are not the only options for charismatic Christianity. Drawing on the concept of 'spiritual capital', it argues that some varieties of charismatic Christianity have the resources to contribute to democratization. For example, this congregation's self-styled 'de-institutionalization' process is opening up new avenues for people to learn democratic skills and develop a worldview that is relationship-centred, participatory, and anti-authoritarian. The article concludes that spiritual capital can be a useful tool for analysing the role of religions in democratizations. It notes, however, that analysts should take care to identify and understand what variety of spiritual capital is generated in particular situations, focusing on the worldviews it produces and the consequences of those worldviews for democratization. © 2009 Taylor & Francis.

The Local and the Distributed in the Sonic Arts

This paper addresses the relationship between local and distributed strategies with reference to two recent participatory sound art projects in Belfast and Rio de Janeiro. The local concern for site and place is discussed and juxtaposed with distributed practices, which,by definition question and extend the very notion of site or locale. I refer to examples from ethnomusicology, anthropology and education in which participative horizontal research methodologies lead to a dynamic articulation of local conditions and allow for a reflection on how technology impacts on social interaction and relationships with place. The works of Samuel Araújo, Georgina Born and Brazilian pedagogue Paulo Freire provide a framework of reference in this context.

Architecture as Pedagogy: Alive and Kicking

This workshop draws on an emerging collaborative body of research by Lovett, Morrow and McClean that aims to understand architecture and its processes as a form of pedagogical practice: a civic pedagogy.

Architectural education can be valued not only as a process that delivers architecture-specific skills and knowledges, but also as a process that transforms people into critically active contributors to society. We are keen to examine how and where those skills are developed in architectural education and trace their existence and/or application within practice. We intend to examine whether some architectural and spatial practices are intrinsically pedagogical in their nature and how the level of involvement of clients, users and communities can mimic the project-based learning of architectural education – in particularly in the context of ‘live project learning’

1. This workshop begins with a brief discussion paper from Morrow that sets out the arguments behind why and how architecture can be understood as pedagogy. It will do so by presenting firstly the relationship between architectural practice and pedagogy, drawing out both contemporary and historical examples of architecture and architects acting pedagogically. It will also consider some other forms of creative practice that explicitly frame themselves pedagogically, and focus on participatory approaches in architectural practice that overlap with inclusive and live pedagogies, concluding with a draft and tentative abstracted pedagogical framework for architectural practice.

2. Lovett will examine practices of architectural operation that have a pedagogical approach, or which recognise within themselves an educational subtext/current. He is most interested in a 'liveness' beyond the 'Architectural Education' of university institutions. The presentation will question the scope for both spatial empowerment / agency and a greater understanding and awareness of the value of good design when operating as architects with participant-clients younger than 18, older than 25 or across varied parts of society. Positing that the learning might be greatest when there are no prescribed 'Learning Outcomes' and that such work might depend on risk-taking and playfulness, the presentation will be a curated showcase drawing on his own ongoing work.

Both brief presentations will inform the basis of the workshop’s discussion which hopes to draw on participants views and expereinces to enrich the research process. The intention is that the overall workshop will lead to a call for contributors and respondents to a forthcoming publication on ‘Architecture as Pedagogy’.

Museum City - Improvisation and the narratives of space

This paper provides four viewpoints on the narratives of space, allowing us to think about possible relations between sites and sounds, reflecting on how places might tell stories, or how practitioners embed themselves in a place in order to shape cultural, social and/or political narratives through the use of sound. I propose four viewpoints that investigate the relationship between sites and sounds, where narratives are shaped and made through the exploration of specific sonic activities. These are:
- sonic activism
- sonic preservation
- sonic participatory action
- sonic narrative of space

I examine each of these ideas in turn before focusing in more detail on the final viewpoint, which provides the context for discussing and analysing a recent site-specific music improvisation project, entitled ‘Museum City’, a work that aligns closely with my proposal for a ‘sonic narrative of space’.
The work ‘Museum City’ by Pedro Rebelo, Franziska Schroeder, Ricardo Jacinto and André Cepeda specifically enables me to reflect on how derelict and/or transitional spaces might be re-examined through the use of sound, particularly through means of live music improvisation. The spaces examined as part ‘Museum City’ constitute either deserted sites or sites about to undergo changes in their architectural layout, their use and sonic make-up. The practice in ‘Museum City’ was born out of a performative engagement with[in] those sites, but specifically out of an intimate listening relationship by three improvisers situated within those spaces.
The theoretical grounding for this paper is situated within a wider context of practising and cognising musical spatiality, as proposed by Georgina Born (2013), particularly her proposition for three distinct lineages that provide an understanding of space in/and music. Born’s third lineage, which links more closely with practices of sound art and challenges a Euclidean orientation of pitch and timbre space, makes way for a heightened consideration of listening and ‘the place’ of sound. This lineage is particularly crucial for my discussion, since it positions music in relation to social experiences and the everyday, which the work ‘Museum City’ endeavoured to embrace.

Substance Use and Misuse : Adolescent Substance Use in the context of the family ; a qualitative study of young people's views on parent child attachments , parenting style and parental substance use

Introduction and Aims. While the role of the family in adolescent substance use has been well documented, few studies have attempted to explore in-depth youth perceptions of how these familial processes/dynamics influence teenage substance use. This paper reports the findings from a study exploring risk and protective factors for teenage substance use within the context of the family as perceived by young people with a view to informing current and future family based prevention and education interventions.
Design and Methods. Data collection took place in nine post-primary schools across Northern Ireland. Nine focus groups using participatory techniques were facilitated with a purposive sample of sixty-two young people (age 13-17 years). Data were transcribed verbatim and analysed using a content/thematic analysis.
Results. Three broad themes/aspects of the family emerged from the data, which may serve to protect or attenuate the risk of substance use among young people. Parent-child attachment was a major theme identified in protecting adolescents from substance use in addition to effective parenting particularly an authoritative style of parenting supplemented by parental monitoring and good parent-child communication to encourage child disclosure. Family substance use was deemed to impact on children’s substance use if exposed at an early age and the harms associated with PSM were discussed in detail.
Discussion and Conclusions. The qualitative approach provides insight into current understanding of youth perceptions of substance use in the context of family dynamics. A number of recommendations are outlined. Family based (preventive) interventions/parenting programmes may benefit from components on effective parenting including authoritative styles, parental monitoring, effective communication, spending time together (building attachments), parent-child conflict, adolescent development and factors which impact on parenting. Parenting programmes tailored to mothers and fathers may be beneficial. School based interventions targeting children/adolescents may be best placed to target children living with parental substance misuse.
Keywords: substance/substance related disorders, focus groups, young people/adolescent,