Matching Items (14)

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An Intention- and Outcome-Focused Perspective on the Doubling of the NIH Budget

Description

This thesis studies the 1998-2003 doubling of the National Institutes of Health budget to evaluate how assertions about the impact of research investments compare with actual health and research outcomes.

This thesis studies the 1998-2003 doubling of the National Institutes of Health budget to evaluate how assertions about the impact of research investments compare with actual health and research outcomes. Stakeholders in the doubling noted a variety of outcomes intended to result from the effort. Using public value mapping (Bozeman and Sarewitz, 2005), I have compared stakeholders' stated intentions of what the doubling ought to achieve with the health and research outcomes actually produced. In applying public value mapping, I first conducted interviews and reviewed press releases, Congressional record, news, and other data from the doubling period. Six public values were commonly represented in this data: (1) improving health outcomes (2) reducing the cost of healthcare (3) producing application-relevant knowledge (4) building biosecurity and biodefense capabilities (5) developing the research enterprise (6) economic growth I then inferred causal logic chains by which increasing funding could lead to achievement of the public values and identified four investment intermediaries through which funding would pass in advancing public values. Finally, using proxies, I evaluated if the public values had advanced in a way directly attributable to funding increases. This analysis identified (5) as achieved. (1), (3), (4), and (6) were indeterminate in one of the two components necessary for evaluating public value achievement: either no clear advancement or no direct link between outcomes and doubling investments. (2) was a failure due to the increase in healthcare costs throughout and following the doubling period. These results indicate that complex societal outcomes used to justify incremental research investments are challenging to causally attribute to those same investments, and thus uncertain premises on which to base policy.

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Agent

Created

Date Created
  • 2017-05

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Smartphones and Privacy: Are Technology and Privacy Incompatible?

Description

This study addresses the question: is it possible for consumers to make informed decisions regarding their privacy, while using smartphones, in the face of the complex web of actors, incentives,

This study addresses the question: is it possible for consumers to make informed decisions regarding their privacy, while using smartphones, in the face of the complex web of actors, incentives, and conveniences afforded by the technology? To address this question, the Social Construction of Technology (SCOT) model is used to analyze common situations consumers find themselves engaged in. Using the SCOT model, relevant actors are identified; their interpretations of various technologies are expressed; relative power is discussed; and possible directions for closure are examined. This analysis takes place by looking at three specific themes within privacy disputes in general: anonymity, confidentiality, and surveillance. These themes are compared and contrasted in regards to their impact on perception of privacy and implications for closure. Arguments are supported through evidence drawn from scholarship on the topic as well as industry and news media. Conclusions are supported through the framework of anticipatory governance.

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Agent

Created

Date Created
  • 2015-05

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Built by fire: wildfire management and policy in Canada

Description

Wildfire is an inescapable feature of Canadian landscapes, burning an average of over two million hectares annually and causing significant repercussions for communities, infrastructure, and resources. Because fire is managed

Wildfire is an inescapable feature of Canadian landscapes, burning an average of over two million hectares annually and causing significant repercussions for communities, infrastructure, and resources. Because fire is managed provincially, each jurisdiction has developed a distinctive approach to preparing for, responding to, and recovering from fire on its landscapes. Using a comparative study between seven provinces and four national agencies, this dissertation examines differences in institutional design and policy with respect to the knowledge management systems required to respond to wildfire: How do policies and procedures vary between jurisdictions, how do they affect the practices of each fire management agency, and how can they be improved through a critical analysis of the knowledge management systems in use? And, what is the role of and limits on expertise within these fire management institutions that manage high-risk, highly uncertain socio- environmental challenges?

I begin by introducing the 2016 Fort McMurray/Horse River fire as a lens for exploring these questions. I then use the past one hundred years of fire history in Canada to illustrate the continual presence of fire, its human and social dimensions, and the evolution of differing fire management regimes. Drawing on extended ethnographic observation and interviewing of fire managers across Canada, I examine the varied provincial systems of response through following an active fire day in Alberta. I analyze the decision support and geospatial information systems used to guide fire agency decision-making, as well as the factors that limit their effectiveness in both response and hazard reduction modes. I begin Part Two with a discussion of mutual aid arrangements between the provinces, and critically examine the core strategy – interagency fungibility – used to allow this exchange. I analyze forecasting and predictive models used in firefighting, with an emphasis on comparing advantages and disadvantages of attempts at predicting future firefighter capacity requirements. I review organizational learning approaches, considering both fire research strategies and after action reviews. Finally, I consider the implication of changes in climates, politics, and public behaviours and their impacts on fire management.

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Agent

Created

Date Created
  • 2018

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Three essays on health and health care in society: public values, genomic policies, and socio-technical futures of our lifespan

Description

Each of the three essays in this dissertation examine an aspect of health or health care in society. Areas explored within this dissertation include health care as a public value,

Each of the three essays in this dissertation examine an aspect of health or health care in society. Areas explored within this dissertation include health care as a public value, proscriptive genomic policies, and socio-technical futures of the human lifespan. The first essay explores different forms of health care systems and attempts to understand who believes access to health care is a public value. Using a survey of more than 2,000 U.S. citizens, this study presents statistically significant empirical evidence regarding values and other attributes that predict the probability of individuals within age-based cohorts identifying access to health care as a public value. In the second essay, a menu of policy recommendations for federal regulators is proposed in order to address the lack of uniformity in current state laws concerning genetic information. The policy recommendations consider genetic information as property, privacy protections for re-identifying de-identified genomic information, the establishment of guidelines for law enforcement agencies to access nonforensic databases in criminal investigations, and anti-piracy protections for individuals and their genetic information. The third and final essay explores the socio-technical artifacts of the current health care system for documenting both life and death to understand the potential for altering the future of insurance, the health care delivery system, and individual health outcomes. Through the development of a complex scenario, this essay explores the long-term socio-technical futures of implementing a technology that continuously collects and stores genetic, environmental, and social information from life to death of individual participants.

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Agent

Created

Date Created
  • 2019

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Assessing corporate bioethics: a qualitative exploration of how bioethics is enacted in biomedicine companies

Description

Corporations in biomedicine hold significant power and influence, in both political and personal spheres. The decisions these companies make about ethics are critically important, as they help determine what products

Corporations in biomedicine hold significant power and influence, in both political and personal spheres. The decisions these companies make about ethics are critically important, as they help determine what products are developed, how they are developed, how they are promoted, and potentially even how they are regulated. In the last fifteen years, for-profit private companies have been assembling bioethics committees to help resolve dilemmas that require informed deliberation about ethical, legal, scientific, and economic considerations. Private sector bioethics committees represent an important innovation in the governance of emerging technologies, with corporations taking a lead role in deciding what is ethically appropriate or problematic. And yet, we know very little about these committees, including their structures, memberships, mandates, authority, and impact. Drawing on an extensive literature review and qualitative analysis of semi-structured interviews with executives, scientists and board members, this dissertation provides an in-depth analysis of the Ethics and Public Policy Board at SmithKline Beecham, the Ethics Advisory Board at Advanced Cell Technology, and the Bioethics Committee at Eli Lilly and offers insights about how ideas of bioethics and governance are currently imagined and enacted within corporations. The SmithKline Beecham board was the first private sector bioethics committee; its mandate was to explore, in a comprehensive and balanced analysis, the ethics of macro trends in science and technology. The Advanced Cell Technology board was created to be like a watchdog for the company, to prevent them from making major errors. The Eli Lilly board is different than the others in that it is made up mostly of internal employees and does research ethics consultations within the company. These private sector bioethics committees evaluate and construct new boundaries between their private interests and the public values they claim to promote. Findings from this dissertation show that criticisms of private sector bioethics that focus narrowly on financial conflicts of interest and a lack of transparency obscure analysis of the ideas about governance (about expertise, credibility and authority) that emerge from these structures and hamper serious debate about the possible impacts of moving ethical deliberation from the public to the private sector.

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Agent

Created

Date Created
  • 2012

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Constructing sustainability: a study of emerging scientific research trajectories

Description

The greatest challenge facing humanity in the twenty-first century is our ability to reconcile the capacity of natural systems to support continued improvement in human welfare around the globe. Over

The greatest challenge facing humanity in the twenty-first century is our ability to reconcile the capacity of natural systems to support continued improvement in human welfare around the globe. Over the last decade, the scientific community has attempted to formulate research agendas in response to what they view as the problems of sustainability. Perhaps the most prominent and wide-ranging of these efforts has been sustainability science, an interdisciplinary, problem-driven field that seeks to address fundamental questions on human-environment interactions. This project examines how sustainability scientists grapple with and bound the deeply social, political and normative dimensions of both characterizing and pursuing sustainability. Based on in-depth interviews with leading researchers and a content analysis of the relevant literature, this project first addresses three core questions: (1) how sustainability scientists define and bound sustainability; (2) how and why various research agendas are being constructed to address these notions of sustainability; (3) and how scientists see their research contributing to societal efforts to move towards sustainability. Based on these results, the project explores the tensions between scientific efforts to study and inform sustainability and social action. It discusses the implications of transforming sustainability into the subject of scientific analysis with a focus on the power of science to constrain discourse and the institutional and epistemological contexts that link knowledge to societal outcomes. Following this analysis, sustainability science is repositioned, borrowing Herbert Simon's concept, as a "science of design." Sustainability science has thus far been too focused on understanding the "problem-space"--addressing fundamental questions about coupled human-natural systems. A new set objectives and design principles are proposed that would move the field toward a more solutions-oriented approach and the enrichment of public reasoning and deliberation. Four new research streams that would situate sustainability science as a science of design are then discussed: creating desirable futures, socio-technical change, sustainability values, and social learning. The results serve as a foundation for a sustainability science that is evaluated on its ability to frame sustainability problems and solutions in ways that make them amenable to democratic and pragmatic social action.

Contributors

Agent

Created

Date Created
  • 2011

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Public values, science values, and decision making in climate science policy

Description

Investments in climate science come with an expectation of social benefit. Science policy--decision processes through which individuals and organizations support, manage, and evaluate research--plays an important role in determining those

Investments in climate science come with an expectation of social benefit. Science policy--decision processes through which individuals and organizations support, manage, and evaluate research--plays an important role in determining those outcomes. Yet the details of how climate science policy actually works have received very little attention amid academic and policy-focused discussions of climate science. This dissertation examines climate science policy with particular attention to how it supports "public values" that justify research investments. It is widely recognized funding for climate science in the US has advanced knowledge considerably in recent decades but failed to produce useful information for decision makers. In Chapter 2, I use a methodological approach known as Public Value Mapping (PVM) to investigate this failure of the science policy system. My results show that science funding institutions have been ineffective at guiding climate science toward desired outcomes because of problematic, but common assumptions about the links between science and societal benefit. The remaining chapters look more closely at the implications of these tacit assumptions, which are held by individuals, and embedded in the organizations that implement climate science policy. Chapter 3 examines the notion that prediction is essential to climate science. Wide acceptance of the "prediction imperative" limits the scope of climate science policy. Chapter 4 examines the interplay of values and assumptions in two recently established organizations in Australia, each supporting research on climate change adaptation. In Chapter 5 I document a widespread assumption in the climate science literature that agreement among multiple models should bolster confidence in their results. This can only be correct if the models are independent of one another. Climate scientists have not demonstrated this to be true, nor have they offered a plausible framework for doing so. This dissertation adds an important dimension to our understanding of how climate science knowledge is produced, while offering constructive and practical recommendations to science policy decision makers working in government programs that fund climate science. Insight from these chapters suggests that an explicit and reflexive focus on values in science policy can be helpful to organizations pursuing science policy innovation.

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Agent

Created

Date Created
  • 2010

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Disasters as opportunities for change towards sustainability

Description

Scholars have highlighted the role of disturbance and crisis, including disasters, in enabling systemic change towards sustainability. However, there are relatively few empirical studies on how individuals and organizations are

Scholars have highlighted the role of disturbance and crisis, including disasters, in enabling systemic change towards sustainability. However, there are relatively few empirical studies on how individuals and organizations are able to utilize disasters as opportunities for change towards sustainability. This dissertation addresses three questions applied to two case studies: First, what changes were pursued in the aftermath of disasters, and to what extent did these changes contribute to sustainability? Second, how were people (and their organizations) able to pursue change towards sustainability? Third, what can be learned about seeing and seizing opportunities for change towards sustainability in disaster contexts and about sustaining those introduced changes over time?

The research entailed the creation of a theoretical framework, synthesizing literature from disaster studies and sustainability transition studies, to enable cross-case comparison and the appraisal of sustainability outcomes (Chapter 1). The framework was applied to two empirical case studies of post-disaster recovery: the 2004 Indian Ocean Tsunami in Aceh, Indonesia (Chapter 2), and the 2010-2012 series of earthquakes in the greater Christchurch area, New Zealand (Chapter 3).

The research revealed no systemic change towards sustainability in either case, although change towards sustainability was pursued in various areas, such as housing, educating, caring, and engaging in governance. Opportunities for sustainability emerged at different points following the disaster; change processes are ongoing. The sustainability changes were supported by “Sustainability Change Agents” (SCAs): people who were able to see and seize opportunities for change towards sustainability in the midst of disaster. SCAs were characterized as individuals with various attributes, starting with an ability to perceive opportunities, catalyze others to support this risk-taking endeavor, and stay in the endurance race. The study concludes with some recommendations for interventions to inform pre-disaster sustainability planning. These avenues include a toolbox and a curricular approach that would educate and enable students as future professionals to see and seize opportunities for change towards sustainability in disaster contexts (Chapter 4).

Contributors

Agent

Created

Date Created
  • 2016

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Beyond Compliance: Cultivating Ethical Virtues in Scientific Research

Description

Principle-based ethical frameworks, which commonly make use of codes of ethics, have come to be the popular approach in guiding ethical behavior within scientific research. In this thesis project, I

Principle-based ethical frameworks, which commonly make use of codes of ethics, have come to be the popular approach in guiding ethical behavior within scientific research. In this thesis project, I investigate the benefits and shortcomings of this approach, ultimately to argue that codes of ethics are valuable as an exercise in developing a reconciled value profile for a given research community, and also function well as an internal and external proclamation of values and norms. However, this approach results in technical adherence, at best, and given the extent to which scientific research now irreversibly shapes our experience as human beings, I argue for the importance of cultivating ethical virtues in scientific research. In the interest of doing so I explore concepts from Aristotelian virtue ethics, to consider how to ameliorate the shortcomings of principle-based approaches. This project was inspired by a call to research and develop an ethical framework upon which to found a cooperative research network that would be aimed at combating the spread of emerging and re-emerging infectious diseases in resource-restricted countries, specifically throughout Latin America. The desire to found this network on an ethics-based framework is to move beyond technical compliance and cultivate a research community committed to integrity, therefore establishing and maintaining trust and communication that will allow for unprecedented productive collaboration and meaningful outcomes. I demonstrate in this thesis that this requires more than a code of ethics, and use this initiative as a case study to exhibit the merit of integrating concepts from virtue ethics.

Contributors

Agent

Created

Date Created
  • 2017

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Atrial fibrillation ablation: history, practice, and innovation

Description

Atrial fibrillation (AF) is the most common abnormal heart rhythm, affecting

nearly 2% of the world’s population at a cost of $26 Billion in the United States annually, and incalculable costs

Atrial fibrillation (AF) is the most common abnormal heart rhythm, affecting

nearly 2% of the world’s population at a cost of $26 Billion in the United States annually, and incalculable costs worldwide. AF causes no symptoms for some people. However, others with AF experience uncomfortable symptoms including palpitations, breathlessness, dizziness, and fatigue. AF can severely diminish quality of life for both AF sufferers and their loved ones. Beyond uncomfortable symptoms, AF is also linked to congestive heart failure and stroke, both of which can cause premature death. Medications often fail to control AF, leading patients and healthcare providers to seek other cures, including catheter ablation. To date, catheter ablation has yielded uneven results, but garners much attention in research and innovation in pursuit of a cure for AF. This dissertation examines the historical development and contemporary practices of AF ablation to identify opportunities to improve the innovation system for the disease. First, I trace the history of AF and AF ablation knowledge from the 2nd century B.C.E. through the present. This historical look identifies patterns of knowledge co-development between science, technology, and technique, as well as publication patterns impacting knowledge dissemination. Second, I examine the current practices of AF ablation knowledge translation from the perspective of clinical practitioners to characterize the demand-side of knowledge translation in real-world practice. Demand-side knowledge translation occurs in nested patterns, and requires data, experience, and trust in order to incorporate knowledge into a practice paradigm. Third, I use social network mapping and analysis to represent the full AF ablation knowledge-practice system and identify

opportunities to modify research and innovation practice in AF ablation based on i

measures of centrality and power. Finally, I outline six linked recommendations using raw data capture during ablation procedures and open big data analytics, coupled with multi-stakeholder social networking approaches, to maximize innovation potential in AF ablation research and practice.

Contributors

Agent

Created

Date Created
  • 2016