Normalizing Novelty: Regulating Biotechnological Risk at the U.S. EPA

Drs. Levidow and Carr examine EPA\u27s regulation of biotechnology in the field of genetically modified organisms

A manifesto for Web Science

A clarion call for a new research agenda has been sounded, notably by Berners-Lee et al (2006a 2006b) and Hendler et al (2008) for a ‘science of decentralised information systems’ to ‘discover’ generative mechanisms, and synthesise knowledge and technology to push both forwards. Computer Science alone - focussing as it does on the engineering/technology of the web - could not deliver the ambitions of this new agenda. Equally, other disciplines implicated in Web Science might use the web to support their research, or be interested in virtual life, but they lacked a coherent or unifying mandate for engaging with the web. By calling for Web Science these pioneers opened up a new space. But this is uncharted terrain. As a technology the web is still new. While it has grown rapidly and unexpectedly we are only just beginning to think about the web as a phenomena to be studied. The proponents of Web Science had the vision to see that this new approach had to include disciplines beyond their own; it had to be greater than the sum of the parts of individual disciplines. This is a radical call to leave disciplinary silos and work collaboratively to produce something bigger and better. Moreover, it takes in the founding principles of the web and a desire for a web that is pro-human: this is a call for a science that is capable of insight and intervention to create a better world. Our paper aims to take up this challenge and suggests how we might map the Web Science terrain. We come at this from a slightly different direction to the web science pioneers and want to demonstrate how social science can, and indeed must, contribute to developing Web Science. This paper will explore the contribution of social theory and sociological concepts that shape how we engage with the web. We focus on four key aspects which seem to be central to this understanding. Firstly co-constitution, the fact that the web both shapes and is shaped by humans/society. Secondly the importance of heterogeneous networks of multiple and diverse actors (including technologies themselves) that make the web as we know it. Thirdly the significance of performativity, that the web is an unfolding, enacted practice, as people interact with http to build ‘the web’ moment by moment. Finally, drawing these ideas together we see the web we have now as an immutable mobile or temporarily stabilised network. We use these ideas to map what web science could be and to suggest how we might use sociology to understand the web. Our aim is to provoke and stimulate debate and to move beyond superficial popular psychology and sociology (which envisages engineering human behaviour) and to challenge some of the ways in which social science has engaged with technology and technical actors. To facilitate this, and taking our lead from Donna Harroway, the paper sets out a radical manifesto for web science

A realist synthesis of the evidence on outreach programmes for health improvement of Traveller Communities

Background: Improving the health of Traveller Communities is an international public health concern but there is little evidence on effective interventions. This study aimed to explain how, for whom and in what circumstances outreach works in Traveller Communities. Methods: A realist synthesis was conducted. Systematic literature searches were conducted between August and November 2011. Grey literature was sought and key stakeholders were involved throughout the review process. Iterative steps of data extraction, analysis and synthesis, followed by additional searches were undertaken. Results: An explanatory framework details how, why and in what circumstances participation, behaviour change or social capital development happened. The trust status of outreach workers is an important context of outreach interventions, in conjunction with their ability to negotiate the intervention focus. The higher the outreach worker’s trust status, the lower the imperative that they negotiate the intervention focus. A ‘menu’ of reasoning mechanisms is presented, leading to key engagement outcomes. Conclusions: Adopting a realist analysis, this study offers a framework with explanatory purchase as to the potential of outreach to improve health in marginalised groups

Quality of life in long-term conditions (ViPER)

There is an increasing policy drive for nurses to encourage and operationalise self-management and collaborative partnerships with people with long-term conditions. Central to this is a development of understanding of the premises to a good quality of life. This presentation reports on a project in which the quality of life of people with Multiple Sclerosis (MS) was assessed. In parallel, the researchers examined the meaning attributed to the term in policy documentation such as the NSF for Long-Term conditions (2005) (Lhussier 2009). It emerges that quality of life is premised upon an understanding of six oppositional pairs of: • Life and death (because to talk about ‘quality of life’ is to assume a clear and fundamental difference between the two concepts) • Health and disease (because people with long-term conditions are often assumed to have a poorer quality of life) • Independence and dependence (because maintaining independence is one of the key aim of health care practice in long-term conditions) • Empowerment and disempowerment (because patient empowerment is a key policy driver) • Certainty and uncertainty (as the uncertainty of an illness trajectory impacts greatly on people’s perception of their quality of life) • Ability and disability (because disability is to be avoided for as long as possible in MS) Drawing on the data collected, this presentation aims to expose and critique these six oppositional pairs so that understanding of quality of life in long-term conditions can be enhanced and contextualised. Thus this presentation does not aim at solving definitional or measurement issues, but at engaging practitioners in critical thinking about such a key concept as quality of life. Such an engagement in questioning of pre-understandings is crucial for nursing practice to evolve and adapt to changing population needs, as the prevalence of long-term conditions continues to increase

Using mixed methods to track the growth of the Web: tracing open government data initiatives

In recent years, there have been a rising number of Open Government Data (OGD) initiatives; a political, social and technical movement armed with a common goal of publishing government data in open, re-usable formats in order to improve citizen-to-government transparency, efficiency, and democracy. As a sign of commitment, the Open Government Partnership was formed, comprising of a collection of countries striving to achieve OGD. Since its initial launch, the number of countries committed to adopting an Open Government Data agenda has grown to more than 50; including countries from South America to the Far East.Current approaches to understanding Web initiatives such as OGD are still being developed. Methodologies grounded in multidisciplinarity are still yet to be achieved; typically research follows a social or technological approach underpinned by quantitative or qualitative methods, and rarely combining the two into a single analytical framework. In this paper, a mixed methods approach will be introduced, which uses qualitative data underpinned by sociological theory to complement a quantitative analysis using computer science techniques. This method aims to provide an alternative approach to understanding the socio-technical activities of the Web. To demonstrate this, the activities of the UK Open Government Data initiative will be explored using a range of quantitative and qualitative data, examining the activities of the community, to provide a rich analysis of the formation and development of the UK OGD community

Conservation on farms: Conflicting attitudes, social pressures and behaviour

In the late 1970s and early 1980s, conservationists' concern about the loss of wildlife habitat on farmland escalated into open conflict with farmers, the conflict being heightened by controversy surrounding the passing of the Wildlife and Countryside Act in 1981. An improved understanding of the attitudes of farmers and conservationists would help ensure the most appropriate measures are adopted to resolve or avoid such conflict. This research therefore compared the attitudes of farmers and conservationists in Bedfordshire in two pairs of surveys. In the first, free-ranging interviews were used to establish the range of opinions on farming and conservation held by the two groups. In the second, Fishbein and Ajzen's theory of reasoned action was used as the framework for a more detailed comparison of the differences in attitudes between the two communities. The correlation of attitudes and social pressures with farmers' behaviour was also explored for three conservation-related activities about which there was conflict: hedge management, pesticide use and straw disposal. The first survey revealed a complex matrix of shared, complementary and conflicting beliefs and values between and within the two communities. Examples of conflicting values included those concerning land ownership and freedom of individual action versus stewardship, and pride in an efficient, productive and tidy farm versus a wilder countryside. The second survey showed that while farmers agreed with conservationists about the advantages of conservation expressed in general terms, once decisions about specific farm practices were involved, attitudes to conservation and wildlife were far outweighed by attitudes to farming and business considerations. Social pressures on farmers from conservationists were minimal; the strongest social pressures came from within the farming community itself and these generally served to perpetuate the dominant farming values. Although the theory of reasoned action provided a valuable means of exploring the role of attitudes, social pressures and behaviour in the conflict, some limitations in the use of the model in these complex circumstances were found. In particular it did not allow a distinction to be made between self-interested and deeply held values; the recommended method of constructing and scoring a behaviourial index was inappropriate where value judgements were involved; and respondents experienced difficulty in distinguishing between beliefs and values when evaluative opinion statements were used. Some suggestions for overcoming these limitations are made

UK community health visiting: challenges faced during lean implementation

This paper presents an overview of the challenges and potential of lean implementation for the health visiting service in England and examines the rhetoric and the reality of the situation. It is coauthored by academic researchers and senior service providers so as to embrace the multidimensional issues impacting on this subject. If lean thinking is to be implemented in relation to health visiting, it is important to understand how it is likely to be viewed by practitioners and line managers in settings where it is used. In order to contextualize the discussion, an introduction to the roles, systems, and structures of health visiting are provided. The literature on what lean implementation is, what it means, and in particular the application and potential of the approach to primary care and public health services is reviewed. The process and findings from a focus group convened within a large primary care organization in the National Health Service during their lean implementation is reported. The paper concludes that it is important for staff at all levels to see a clear link between strategic aims and objectives and the planning processes operated by providers and commissioners. It appears that the successful introduction of lean thinking should focus more on productive working and thereby reducing waste. This has the potential to refresh workforce models to ensure that health visiting and other practitioners liberate the use of their specialist knowledge and skills. In a context of enhanced partnership working, the stage is then set for providers to add value to the whole system and together improve service user outcomes

Exposing the impact of Citizens Advice Bureau services on health: a realist evaluation protocol

Introduction Welfare advice services can be used to address health inequalities, for example, through Citizens Advice Bureau (CAB). Recent reviews highlight evidence for the impact of advice services in improving people's financial position and improving mental health and well-being, daily living and social relationships. There is also some evidence for the impact of advice services in increasing accessibility of health services, and reducing general practitioner appointments and prescriptions. However, direct evidence for the impact of advice services on lifestyle behaviour and physical health is currently much less well established. There is a need for greater empirical testing of theories around the specific mechanisms through which advice services and associated financial or non-financial benefits may generate health improvements. Methods and analysis A realist evaluation will be conducted, operationalised in 5 phases: building the explanatory framework; refining the explanatory framework; testing the explanatory framework through empirical data (mixed methods); development of a bespoke data recording template to capture longer term impact; and verification of findings with a range of CAB services. This research will therefore aim to build, refine and test an explanatory framework about how CAB services can be optimally implemented to achieve health improvement. Ethics and dissemination The study was approved by the ethics committee at Northumbria University, UK. Project-related ethical issues are described and quality control aspects of the study are considered. A stakeholder mapping exercise will inform the dissemination of results in order to ensure all relevant institutions and organisations are targeted

Critical systems heuristics: a tool for the inclusion of ethics and values in complex policy decisions

From the introduction Drawing on a study of members of the UK’s Agriculture and Biotechnology Commission, this paper explores the use of Critical Systems Heuristics (CSH) as a structured approach to the inclusion of ethics and values in complex policy decisions. CSH was devised by Ulrich in a planning context, as a way of making explicit the value assumptions underlying practical judgements by means of critical reflection. It is rooted in Critical Systems Thinking, which challenged earlier notions of systems thinking by introducing a more socially aware and critical form of systems practice. Ulrich used the concept of system boundaries to provide a conceptual framework for dealing with the facts and values that underlie a decision. The CSH framework encourages people to consider critically such matters as what counts as an ethically-defendable 'improvement', who should benefit, and what should count as relevant knowledge and sources of expertise. This paper highlights some of the advantages and disadvantages of CSH as a tool for achieving a more inclusive, critical and self-reflective approach to decision making about genetically modified crops

Enabling self-identity revisioning through portraiture, for people living with life threatening and chronic illnesses: paint me this way!

Arguably life threatening and chronic illness is not just an attack on the body, it is an attack on a person s sense of self-identity, shattering the means by which a person experiences the world, and by which they also are experienced, contributing to a person s sense of powerlessness and distress. People living with a life threatening or chronic illness, often describe the impact of their diagnosis, treatment and illness as having changed their sense of self-identity beyond all recognition. Seven participants, purposefully selected from those attending a weekly day-hospice session in Wiltshire, took part in the study. This qualitative, practice-based research project challenges the power dynamics in art therapy and attempts to equalise the relationship between researcher and participant through the development of a collaborative intersubjective relationship, within which the participants are recognised as experts on their lived experience, and in a series of negotiations , co-design their own portraits directing how they wish to be portrayed. Through this process the participants become patient/researchers (PRs) and the artist/therapist/researcher (ATR), by creating the portraits, also becomes a reflexive participant . This project utilises an in-depth multiple case-study design and multiple creative data generation methods as well as a phenomenological approach to data analysis. This project reverses the terms of engagement within art therapy and uses the art therapist s artistic practice or third hand to create portraits for patients. (This is based upon the assumption that most art therapy theories terms of engagement include patients producing art within the therapeutic encounter, however some psychodynamic and psychoanalytic art therapists may use client art generation selectively or not at all). This raises important questions around who makes the artwork in art therapy interventions . The use of portraiture as a third hand intervention enables the art therapist to develop a sense of positive focussed attention and mirroring and attunement through the art object, enabling the addition of coherence through aesthetic resonance and the holding of dualities through metaphor and symbolism. The results of this study demonstrate the power of portraiture as an intersubjective way of knowing, being and relating, enabling the revisioning of identities disrupted by illness, characterised by increases in participants creative capacity to adapt to illness and feelings of home-like-being-in-the-world, developing a stronger, more coherent lived experience of self-identity, effecting closure to difficult life experiences, and improving their overall quality of life