The EU’s Biopolitical Governance of Advanced Therapy Medicinal Products

This paper focuses on the specific example of the newly operational Regulation on Advanced Therapy Medicinal Products to explore the potential for biopolitics, an arena in which biocitizens can demand and contest the exercise of EU power over life. The paper shows how the discourses producing, organizing and orchestrating citizen participation in the EU’s governance of advanced therapies from above figure a ‘deficit model’ of citizens in need of education inter alia through their membership of patients’ associations who have membership of the Committee on Advanced Therapies established by the Regulation. Biocitizens are shown to be incorporated to service the EU’s legitimacy needs. The paper then warns against assuming biocitizens’ (self-) reflexivity ensures they do not reiterate and reinforce their construction within the ‘deficit model’ by unwittingly deploying the terms of their subjection. After which the paper highlights some elements that provide a rhetorical and operational opening for participation, and which therefore can be used by biocitizens to reconstruct their engagement with EU governance from below, the wider governance of advanced therapies, as well as in their self-governance.

Localization in Sardinia and Its Obstacles: A Reply to Hospers’ “Localization in Europe’s Periphery: Tourism Development in Sardinia”

In this reply to Hospers' “Localization in Europe's Periphery: Tourism Development in Sardinia” by Gert-Jan Hospers (2003), we argue that the author's advocacy of localized economic policies as a viable means to the economic development of Sardinia does not take into account current institutional assets that prevent Sardinia from pursuing localized interests effectively. We first discuss the historical background of these institutional assets, highlighting that a top-down approach to decision-making has characterized relations between Sardinia and the central state for most of the modern era. We then discuss the institutional and economic impediments to Sardinian attempts to pursue localized policies in light of recent institutional conflicts between region and central state. Our conclusion is that the localization of economic strategies necessitates entwined localization of decision-making powers in order to be effective.

Evaluation of the Q-method as a method of public participation in the selection of sustainable development indicators

The complexity of sustainable development means that it is often difficult to evaluate and communicate the concept effectively. One standard method to reduce complexity and improve Communication, while maintaining scientific objectivity, is to use selected indicators. The aim of this paper is to describe and evaluate a process Of public participation in the selection of sustainable development indicators that utilised the Q-method for discourse analysis. The Q-method was Utilised to combine public opinion with technical expertise to create a list of technically robust indicators that would be relevant to the public, The method comprises statement collection, statement analysis, Q-sorts and Q-sort analysis. The results of the Q-method generated a list of statements for which a preliminary list of indicators was then developed by a team of experts from the fields of environmental science, sustainable development and Psychology. Subsequently members of the public evaluated the preliminary list of indicators, to select a final list of indicators that were both technically sound and incorporated the views of the public. The Utilisation of the Q-method in this process was evaluated using previously published criteria. The application of the Q-method in this context needs to be considered not only by the quality of the indicators developed, but also from the perspective of the benefit of the process to the participants. it was concluded that the Q-method provided an effective framework for public participation in the selection of indicators as it allowed the public to discuss Sustainable development in familiar language and in the context of their daily lives. By combining this information with expert input, a list of technically robust indicators that resonate with the public was developed. The results demonstrated that many citizens are not aware Of Sustainable development, and if it is to be successfully communicated to them, then indicators and policy need to be couched in terms familiar and relevant to citizen and communities. (C) 2009 Elsevier Ltd. All rights reserved.

Gov 2.0: Towards a User Generated State?

New elements associated withWeb 2.0 relating to interactivity and end-user focus have combined with the availability of newlevels of information to encourage the development of what may be termed a Gov 2.0 approach.This, in combination with recent initiatives in the modernising government programme, has emphasised new levels of public participation and engagement with government as well as a re-engineering of public services tomake them more responsive to their end users. Adopting a governmentality perspective, it is argued that this involves a wider process of governing through constructing and reconstructing ideas of the public, community and individual citizen-consumers who take on a role in their own governance. It is argued that this fundamental re-working of the nature of what is public represents a constitutional change that is perhaps more signi¢cant than the constitutional reform programme directed to formal government which attracts more attention

‘Stakeholders’ views of legal and advice services for people admitted to psychiatric hospital’

This paper describes a study that used a mixed method approach to elicit the views of a range of stakeholders about experiences of compulsory admission to psychiatric hospital, and the use of the Mental Health Review Tribunal (MHRT). The paper begins with an introduction to the background of the study, one that took place in Northern Ireland, a region in the UK with its own mental health legislation and policy. A review of literature is then presented. This highlights some of the disadvantages that service users and carers face when dealing with professionals during and following compulsory admission to hospital. This section concludes with an overview of literature on the MHRT in the UK. A range of methods was used to gather data from the following stakeholders: five service user and carer focus group interviews (n = 44); interviews with four lawyers experienced in Tribunal work; an interview with a legal member of the Tribunal; a survey of solicitors who identified themselves as equipped to carry out Tribunal work; interviews with three managers of organisations that provided patient advocacy services; letters to hospital managers requesting information provided to patients and carers. The findings reveal a number of themes associated with these experiences of compulsory admission to hospital and subsequent use of the Tribunal. Service users and carers generally found it difficult to access relevant information about rights, information provided by hospital managers was uneven and lawyers were often not familiar with processes associated with compulsory admission. There was a range of views about the Tribunal. Most respondents felt that the Tribunal was necessary and mostly satisfactory in the way it carried out its functions, but stakeholders raised a number of issues. Carers in particular felt that they should be more involved in decision-making processes, whereas lawyers tended to be focused on more technical, legal issues. Problems of regrading prior to the Tribunal and in examining medical evidence were highlighted by lawyers. There was an appeal for better information and advice by service users and carers, and recognition of the need for better training and education for lawyers. The paper concludes with a brief discussion about current mental health law in the UK, arguing that, in this context, professionals should more proactively use information and advice that can enable service users and carers to defend their rights. Keywords: compulsory mental health; law; legal and advice services

On being a good nurse: reflections on the past and preparing for the future

On being a good nurse: reflections on the past and preparing for the future. The objectives of this paper include reflecting on the attributes of the ‘good’ nurse in the past, outlining thematically the essential attributes (virtues) required by the ‘good’ nurse today and presenting an original four- point framework for ethics in practice. While there is no doubt that nurses in the past were highly professional, the culture within which they practiced tended to stifle the emergence of autonomy, assertiveness, advocacy and accountability. An original table of contemporary attributes, which is congruent with a neo Aristotelian virtue ethical approach, is arranged in themes of Intellectual and Practical Attributes, Dispositional Attributes and Moral Attributes. A framework for professional practice, the ‘Four As’ is then extrapolated from these themes. These four key professional attributes, autonomy, advocacy, accountability and assertiveness, along with the virtues listed in the themes, exemplify the ‘good’ nurse and are identified as the linchpins of modern professional ethics and good conduct.

The Cambridge Companion to Vaughan Williams

An icon of British national identity and one of the most widely performed twentieth-century composers, Ralph Vaughan Williams has been as much misunderstood as revered; his international impact, and enduring influence on areas as diverse as church music, film scores, and popular music, has been insufficiently appreciated. This volume brings together a team of leading scholars, examining all areas of the composer’s output from new perspectives, and re-evaluating the cultural politics of his lifelong advocacy for the music-making of ordinary people. Surveys of major genres are complemented by chapters exploring such topics as the composer’s relationship with the BBC, and his studies with Ravel; uniquely, the book also includes specially commissioned interviews with major living composers Peter Maxwell Davies, Piers Hellawell, Nicola Lefanu, and Anthony Payne.

On Suffering and Sympathy: Jude the Obscure, Evolution and Ethics

This article links Thomas Hardy’s exploration of sympathy in Jude the Obscure to contemporary scientific debates over moral evolution. Tracing the relationship between pessimism, progressivism, and determinism in Hardy’s understanding of sympathy, it also considers Hardy’s conception of the author as enlarger of “social sympathies”--a position, I argue, that was shaped by Leslie Stephen’s advocacy of novel writing as moral art. Considering Hardy’s engagement with writings by Charles Darwin, T. H. Huxley, Herbert Spencer, and others, I explore the novel’s participation in a debate about the evolutionary significance of sympathy and its implications for Hardy’s understanding of moral agency. Hardy, I suggest, offered a stronger defence of morality based on biological determinism than Darwin, but this determinism was linked to an unexpected evolutionary optimism.

Re-engineering Sources of Law for Unaided Litigants

The better models of e-Gov posit high levels of informational communication between citizen and state. Unfortunately, in one area, that communication has traditionally been poor: that is, access to sources of law. There have been a number of reasons for this, but a primary one has been that law was historically mediated for the citizen by the legal profession. This situation is changing with ever increasing numbers of unrepresented litigants being involved at all levels of national court systems in each and every country as well as a generally higher level of intrusion of legislation into everyday home and business life. There have been attempts to improve access through internet based services, but these have improved communication (‘understanding of law’) to only a limited extent. It may be time, this article suggests, to consider re-engineering legal sources so that they better fit the needs of eGov.

Applying an International Human Rights Framework to State Budget Allocations: Rights and Resources

Human rights based budget analysis projects have emerged at a time when the United Nations has asserted the indivisibility of all human rights and attention is increasingly focused on the role of non-judicial bodies in promoting and protecting human rights. This book seeks to develop the human rights framework for such budget analyses, by exploring the international law obligations of the International Covenant on Economic, Social and Cultural Rights (ICESCR) in relation to budgetary processes. The book outlines international experiences and comparative practice in relation to economic and social rights budget analysis and budgeting.

The book sets out an ICESCR-based methodology for analysing budget and resource allocations and focuses on the legal obligation imposed on state parties by article 2(1) of ICESCR to progressively realise economic and social rights to 'the maximum of available resources'. Taking Northern Ireland as a key case study, the book demonstrates and promotes the use of a ‘rights-based’ approach in budgetary decision-making.

The book will be relevant to a global audience currently considering how to engage in the budget process from a human rights perspective. It will be of interest to students and researchers of international human rights law and public law, as well as economic and social rights advocacy and lobbying groups.

Constructing a global understanding of the social ecology of leaving out of home care

Engagement with globalisation is growing in the field of youth transitions from out of home care. This includes cross national exchange of research, policy and practise, regional advocacy networking and global policy development. Furthering this emerging international child welfare perspective requires extending it to countries in the developing world and building conceptual frameworks which encompass a social ecology of care leaving, including its global dimension, the latter needs to address not only the needs, expectations and rights of care leavers but also the theories of change underpinning service design and delivery. Such a model is presented combining resilience and social capital as personal assets situated within a social ecology of support. To illustrate how this provides a means to help engage with the experience of countries where there appears to be very little information available on care leaving, a small scale South African initiative is considered. SA-YES is a youth mentoring project for young people leaving a variety of out of home placements. Planned as a three-year pilot, initial results are encouraging but require more rigorous evaluation focusing on program process and outcomes, quality of interpersonal relationships and synchronisation with cultural expectations and policy environment.

Contingent Participation: Imaginaries of Sustainable Technoscientific Innovation in the EU

Citizen participation is often valorised in the governance of areas of high scientific uncertainty at national, international and supranational levels. This chapter considers citizen or public participation in the specific area of the EU’s agenda on sustainable development as it increasingly frames technoscientific innovation and development. Specifically, the chapter focuses on just one underexplored aspect of the conditions of possibility for participation: imaginaries. These include how the EU imagines its engagement, responsibilities and identity in relation to the specific area, including the knowledges that are constructed and used in decision-making, and by implication the role of citizen or public participation.

The discussion draws on an analysis of the social and technoscientific imaginaries found in legal, regulatory and policy discourses. These construct the frame of sustainable development and build a link between it and technoscientific innovation and development. By attention to imaginaries as one aspect of the frame, the chapter highlights the centrality of, and main interactions between, sustainable development in the inscription and potential disruption of the normative and programmatic background for the operationalisation of technoscientific innovation. These insights are used to highlight how imaginaries constitute a crucial aspect of the conditions of possibility for participation: determining who has to participate in decision-making through configurations of ‘citizen’ or ‘public’, how, why, and which outcomes are to be achieved by that participation.

Sequencing and its consequences:Path dependence and the relationships between genetics and medicalization

Both advocacy for and critiques of the Human Genome Project assume a self-sustaining relationship between genetics and. medicalization. However, this assumption ignores the ways in which the meanings of genetic research are conditional on its position in sequences of events. Based, on analyses of three conditions for which at least one putative gene or genetic marker has been identified, this article argues that critical junctures in the institutional stabilization of phenotypes and the mechanisms that sustain such classifications over time configure the practices and meanings of genetic research. Path dependence is critical to understanding the lack of consistent fit between genetics and medlcalization.