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- Genre: Doctoral Dissertation
- Member of: Theses and Dissertations
Description
ABSTRACT Whole genome sequencing (WGS) and whole exome sequencing (WES) are two comprehensive genomic tests which use next-generation sequencing technology to sequence most of the 3.2 billion base pairs in a human genome (WGS) or many of the estimated 22,000 protein-coding genes in the genome (WES). The promises offered from WGS/WES are: to identify suspected yet unidentified genetic diseases, to characterize the genomic mutations in a tumor to identify targeted therapeutic agents and, to predict future diseases with the hope of promoting disease prevention strategies and/or offering early treatment. Promises notwithstanding, sequencing a human genome presents several interrelated challenges: how to adequately analyze, interpret, store, reanalyze and apply an unprecedented amount of genomic data (with uncertain clinical utility) to patient care? In addition, genomic data has the potential to become integral for improving the medical care of an individual and their family, years after a genome is sequenced. Current informed consent protocols do not adequately address the unique challenges and complexities inherent to the process of WGS/WES. This dissertation constructs a novel informed consent process for individuals considering WGS/WES, capable of fulfilling both legal and ethical requirements of medical consent while addressing the intricacies of WGS/WES, ultimately resulting in a more effective consenting experience. To better understand components of an effective consenting experience, the first part of this dissertation traces the historical origin of the informed consent process to identify the motivations, rationales and institutional commitments that sustain our current consenting protocols for genetic testing. After understanding the underlying commitments that shape our current informed consent protocols, I discuss the effectiveness of the informed consent process from an ethical and legal standpoint. I illustrate how WGS/WES introduces new complexities to the informed consent process and assess whether informed consent protocols proposed for WGS/WES address these complexities. The last section of this dissertation describes a novel informed consent process for WGS/WES, constructed from the original ethical intent of informed consent, analysis of existing informed consent protocols, and my own observations as a genetic counselor for what constitutes an effective consenting experience.
ContributorsHunt, Katherine (Author) / Hurlbut, J. Benjamin (Thesis advisor) / Robert, Jason S. (Thesis advisor) / Maienschein, Jane (Committee member) / Northfelt, Donald W. (Committee member) / Marchant, Gary (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2013
Description
Once perceived as an unimportant occurrence in living organisms, cell degeneration was reconfigured as an important biological phenomenon in development, aging, health, and diseases in the twentieth century. This dissertation tells a twentieth-century history of scientific investigations on cell degeneration, including cell death and aging. By describing four central developments in cell degeneration research with the four major chapters, I trace the emergence of the degenerating cell as a scientific object, describe the generations of a variety of concepts, interpretations and usages associated with cell death and aging, and analyze the transforming influences of the rising cell degeneration research. Particularly, the four chapters show how the changing scientific practices about cellular life in embryology, cell culture, aging research, and molecular biology of Caenorhabditis elegans shaped the interpretations about cell degeneration in the twentieth-century as life-shaping, limit-setting, complex, yet regulated. These events created and consolidated important concepts in life sciences such as programmed cell death, the Hayflick limit, apoptosis, and death genes. These cases also transformed the material and epistemic practices about the end of cellular life subsequently and led to the formations of new research communities. The four cases together show the ways cell degeneration became a shared subject between molecular cell biology, developmental biology, gerontology, oncology, and pathology of degenerative diseases. These practices and perspectives created a special kind of interconnectivity between different fields and led to a level of interdisciplinarity within cell degeneration research by the early 1990s.
ContributorsJiang, Lijing (Author) / Maienschein, Jane (Thesis advisor) / Laubichler, Manfred (Thesis advisor) / Hurlbut, James (Committee member) / Creath, Richard (Committee member) / White, Michael (Committee member) / Arizona State University (Publisher)
Created2013
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 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.
ContributorsBrian, Jennifer (Author) / Robert, Jason S (Thesis advisor) / Maienschein, Jane (Committee member) / Hurlbut, James B (Committee member) / Sarewitz, Daniel (Committee member) / Brown, Mark B. (Committee member) / Moreno, Jonathan D. (Committee member) / Arizona State University (Publisher)
Created2012
Description
The Committee on Rare and Endangered Wildlife Species (CREWS) of the U.S. Fish and Wildlife Service (FWS) made important and lasting contributions to one of the most significant pieces of environmental legislation in U.S. history: the Endangered Species Act of 1973 (ESA). CREWS was a prominent science-advisory body within the U.S. Department of the Interior (DOI) in the 1960s and 1970s, responsible for advising on the development of federal endangered-wildlife policy. The Committee took full advantage of its scientific and political authority by identifying a particular object of conservation--used in the development of the first U.S. list of endangered species--and establishing captive breeding as a primary conservation practice, both of which were written into the ESA and are employed in endangered-species listing and recovery to this day. Despite these important contributions to federal endangered-species practice and policy, CREWS has received little attention from historians of science or policy scholars. This dissertation is an empirical history of CREWS that draws on primary sources from the Smithsonian Institution (SI) Archives and a detailed analysis of the U.S. congressional record. The SI sources (including the records of the Bird and Mammal Laboratory, an FWS staffed research group stationed at the Smithsonian Institution) reveal the technical and political details of CREWS's advisory work. The congressional record provides evidence showing significant contributions of CREWS and its advisors and supervisors to the legislative process that resulted in the inclusion of key CREWS-inspired concepts and practices in the ESA. The foundational concepts and practices of the CREWS's research program drew from a number of areas currently of interest to several sub-disciplines that investigate the complex relationship between science and society. Among them are migratory bird conservation, systematics inspired by the Evolutionary Synthesis, species-focused ecology, captive breeding, reintroduction, and species transplantation. The following pages describe the role played by CREWS in drawing these various threads together and codifying them as endangered-species policy in the ESA.
ContributorsWinston, Johnny (Author) / Hamilton, Andrew (Thesis advisor) / Maienschein, Jane (Committee member) / Henson, Pamela (Committee member) / Collins, James (Committee member) / Minteer, Ben (Committee member) / Arizona State University (Publisher)
Created2011
Description
This dissertation investigates how ideas of the right relationships among science, the public, and collective decision-making about science and technology come to be envisioned in constructions of public engagement. In particular, it explores how public engagement has come to be constructed in discourse around gene editing to better understand how it holds together with visions for good, democratic governance of those technologies and with what effects. Using a conceptual idiom of the co-production of science and the social order, I investigate the mutual formation of scientific expertise, responsibility, and democracy through constructions of public engagement. I begin by tracing dominant historical narratives of contemporary public engagement as a continuation of public understanding of science’s projects of social ordering for democratic society. I then analyze collections of prominent expert meetings, publications, discussions, and interventions about development, governance, and societal implications human heritable germline gene editing and gene drives that developed in tandem with commitments to public engagement around those technologies. Synthesizing the evidence from across gene editing discourse, I offer a constructive critique of constructions of public engagement as expressions and evidence of scientific responsibility as ultimately reasserting and reinforcing of scientific experts' authority in gene editing decision-making, despite intentions for public engagement to extend decision-making participation and power to publics. Such constructions of public engagement go unrecognized in gene editing discourse and thereby subtly reinforce broader visions of scientific expertise as essential to good governance by underwriting the legitimacy and authority of scientific experts to act on behalf of public interests. I further argue that the reinforcement of scientific expert authority in gene editing discourse through public engagement also centers scientific experts in a sociotechnical imaginary that I call “not for science alone.” This sociotechnical imaginary envisions scientific experts as guardians and guarantors of good, democratic governance. I then propose a possible alternatives to public engagement alone to improve gene editing governance by orienting discourse around notions of public accountability for potential shared benefits and collective harms of gene editing.
ContributorsRoss, Christian (Author) / Hurlbut, James B. (Thesis advisor) / Maienschein, Jane (Thesis advisor) / Collins, James P. (Committee member) / Crow, Michael M. (Committee member) / Sarewitz, Daniel R. (Committee member) / Arizona State University (Publisher)
Created2021
Description
Scientific researchers have studied microorganisms since the emergence of the single lens microscope in the 17th century. Since then, researchers designed and published many thousands of images to record and share their observations, including hand-drawn diagrams, photomicrographs, and photographs. Images shaped how researchers conceived of microorganisms, their concepts of microorganisms shaped their images, and their images and concepts were shaped by the contexts in which they were working. Over time, the interplay of images and concepts in various research contexts participated in the development of new concepts related to microorganisms, like the “biofilm” concept, or the idea that bacteria exist in nature as complex aggregates attached to surfaces via extracellular polymeric matrices. Many histories of microbiology locate the origin of the biofilm concept in the 1970s, but that date obscures the rich history of research about attached microbial aggregates that occurred throughout the history of microbiology. I discovered how the interplay of images and concepts related to bacteria participated in the development of the biofilm concept by documenting when and why researchers used different visual features to represent changing concepts related to microorganisms. I specifically examined how and why scientists represented evolving concepts related to bacteria during the 17th century (Chapter 1), from the late 17th century to the early 20th century (Chapter 2), and during the first seventy-four years of the 20th century (Chapter 3). I discovered the biofilm concept developed in at least three unique research contexts during the 20th century, and how images reflected and shaped the concept’s development in each case. The narrative and collection of images generated from this work serve as a visual history of the development of scientists’ ideas about the nature of bacteria over 300 years.
ContributorsGuerrero, Anna Clemencia (Author) / Maienschein, Jane (Thesis advisor) / Laubichler, Manfred (Committee member) / Sterner, Beckett (Committee member) / Matlin, Karl (Committee member) / Arizona State University (Publisher)
Created2023
Description
This dissertation investigates the convergence of the nation-state, biomedicine and (bio)capital around the construction of sickle cell disease as a subaltern disorder in the caste-based society of India. It inquires how sickle cell disease that developed evolutionarily due to environmental factors—and that is also globally racialized as a “Black disease”—has come to be associated with subaltern communities, particularly the indigenous, traditionally non-Hindu Adivasi communities of India. Such a subaltern association characterizes Adivasi biologies as inherently genetically “risky” thereby providing a biopolitical mandate to the Hindu-majoritarian Indian State to carry out biomedical interventions through promissory biocapital in the name of democratic inclusion. I center on the illness narratives of subaltern sickle cell sufferers to highlight how the caste-ization of sickle cell bodies in biomedical and policy discourses, and the attendant biocapital prospecting of subaltern biologies, are nonetheless challenged by communities through their lived experiences. Viewing this association from the Adivasi standpoint—marked by continuous dispossession and displacement—illuminates not only the biopolitical governance of subaltern reproduction by the Indian State. A primary objective of my dissertation project is also to use precarity as an epistemic site for interrogating the scopes and limits of a novel biopower formed by the nexus between the State, national biomedicine and transnational biocapital. This dissertation is therefore an attempt at unearthing the subjugated knowledges of Adivasi communities regarding alternative modes of existing in the world that continuously resist the assimilatory power of race, caste and capital. In ethnographically centering narratives of suffering among doubly (socially/economically) marginalized communities, the project illuminates the contradictions between public health measures that emphasize on sickle cell management through biomedical technologies of reproductive screening and the material conditions of sickle cell sufferers struggling to access basic medical care. This dissertation therefore juxtaposes policy interventions against community articulations of reproductive freedom that posits community health work as the fulcrum for developing reproductively just ecologies. At the same time, in utilizing multi-modal and multi-sited ethnographic methods, the project also contributes towards developing decolonial and digital ethnographic methods that are attentive to the aggravated precarity of marginalized communities in a pandemic prone world.
ContributorsDas, Sanghamitra (Author) / Smith, Lindsay A. (Thesis advisor) / Quan, H.L.T. (Committee member) / Maienschein, Jane (Committee member) / Prasad, Indulata (Committee member) / Robert, Jason (Committee member) / Arizona State University (Publisher)
Created2023
Description
Abortion is a controversial topic internationally. Most current debates about abortion concern when, if at all, it should be legal. However, researchers have shown many times that after an abortion ban, maternal and infant mortalities rise significantly, as women who seek out abortions do so regardless of abortion legality. So, is it possible to reduce abortions in a population without delegalizing abortion and, if so, how? Why do some countries have higher abortion rates than others in the presence of the same law?This dissertation answers both questions. First, I present historical evidence in the first comprehensive comparative analysis of all 15 post-Soviet countries, which have very similar abortion laws originating from the Union of Soviet Socialist Republics (USSR). Second, I use those findings to build the first agent-based model (ABM) of unintended pregnancies in a hypothetical artificial population.
USSR was the only country in the world to complete its demographic transition through abortion instead of modern contraception, and the Soviet government passed the first law in the world to allow abortion upon request in 1920. After the USSR dissolution in 1991, post-Soviet countries maintained very similar abortion laws, but had very different abortion rates for most years. Analysis of fertility data from post-Soviet countries shows that the prevalence of some specific contraceptive methods, namely the rhythm method (r = 0.82), oral pill (r = 0.56), and male condom (r = 0.51) are most strongly correlated with high abortion rates, and that sex education is a factor that reduces the rates in otherwise similar countries (p = 0.02).
The ABM shows that even basic sex education results in fewer abortions than no sex education or abstinence-based sex education (p < 0.01). In scenarios without sex education, basic quality of post-abortion contraceptive counseling (PACC) is better than no PACC or low-quality PACC at reducing abortions (p < 0.01). Still, the higher the quality of sex education or PACC, the fewer abortions in the artificial population. The ABM is adaptive and policy makers can use it as a decision-support tool to make evidence-based policy decisions regarding abortion, and, potentially, other sociobiological phenomena with some adjustments to the code.
ContributorsZiganshina Lienhard, Dina A. (Author) / Maienschein, Jane (Thesis advisor) / Gaughan, Monica (Thesis advisor) / Laubichler, Manfred (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2023
Description
I examined the slogan, “Mental illnesses are illnesses like any other,” widespread in psychiatry and medicine, and in society more generally, to determine if it accurately and usefully characterizes mental illnesses, given current neurological and neurophysiological knowledge. Rather than focus on disease entities for comparison, I scrutinized the symptoms of somatic illnesses and mental illnesses and compared them in three areas: their production, their relationship to social and cultural context, and their potential use as indicators of underlying disease or dysfunction. In all three areas, I found that, contrary to the claim of the slogan, the symptoms of mental illness are not like the symptoms of somatic illness and therefore, by extension, mental illness is not “illness like any other.” I briefly surveyed the implications of this difference between mental illnesses and somatic illnesses, and provided some broad suggestions regarding how this finding might help to inform the characterization of mental illnesses, as well as help direct research and treatment of these conditions.
ContributorsDennert, James (Author) / Robert, Jason (Thesis advisor) / Creath, Richard (Thesis advisor) / Phillips, Ben (Committee member) / Neisewander, Janet (Committee member) / Maienschein, Jane (Committee member) / Arizona State University (Publisher)
Created2024
Description
This dissertation focuses on creating a pluralistic approach to understanding and measuring interdisciplinarity at various scales to further the study of the evolution of knowledge and innovation. Interdisciplinarity is considered an important research component and is closely linked to higher rates of innovation. If the goal is to create more innovative research, we must understand how interdisciplinarity operates.
I begin by examining interdisciplinarity with a small scope, the research university. This study uses metadata to create co-authorship networks and examine how a change in university policies to increase interdisciplinarity can be successful. The New American University Initiative (NAUI) at Arizona State University (ASU) set forth the goal of making ASU a world hub for interdisciplinary research. This kind of interdisciplinarity is produced from a deliberate, engineered, reorganization of the individuals within the university and the knowledge they contain. By using a set of social network analysis measurements, I created an algorithm to measure the changes to the co-authorship networks that resulted from increased university support for interdisciplinary research.
The second case study increases the scope of interdisciplinarity from individual universities to a single scientific discourse, the Anthropocene. The idea of the Anthropocene began as an idea about the need for a new geological epoch and underwent unsupervised interdisciplinary expansion due to climate change integrating itself into the core of the discourse. In contrast to the NAUI which was specifically engineered to increase interdisciplinarity, the I use keyword co-occurrence networks to measure how the Anthropocene discourse increases its interdisciplinarity through unsupervised expansion after climate change becomes a core keyword within the network and behaves as an anchor point for new disciplines to connect and join the discourse.
The scope of interdisciplinarity increases again with the final case study about the field of evolutionary medicine. Evolutionary medicine is a case of engineered interdisciplinary integration between evolutionary biology and medicine. The primary goal of evolutionary medicine is to better understand "why we get sick" through the lens of evolutionary biology. This makes it an excellent candidate to understand large-scale interdisciplinarity. I show through multiple type of networks and metadata analyses that evolutionary medicine successfully integrates the concepts of evolutionary biology into medicine.
By increasing our knowledge of interdisciplinarity at various scales and how it behaves in different initial conditions, we are better able to understand the elusive nature of innovation. Interdisciplinary can mean different things depending on how its defined. I show that a pluralistic approach to defining and measuring interdisciplinarity is not only appropriate but necessary if our goal is to increase interdisciplinarity, the frequency of innovations, and our understanding of the evolution of knowledge.
I begin by examining interdisciplinarity with a small scope, the research university. This study uses metadata to create co-authorship networks and examine how a change in university policies to increase interdisciplinarity can be successful. The New American University Initiative (NAUI) at Arizona State University (ASU) set forth the goal of making ASU a world hub for interdisciplinary research. This kind of interdisciplinarity is produced from a deliberate, engineered, reorganization of the individuals within the university and the knowledge they contain. By using a set of social network analysis measurements, I created an algorithm to measure the changes to the co-authorship networks that resulted from increased university support for interdisciplinary research.
The second case study increases the scope of interdisciplinarity from individual universities to a single scientific discourse, the Anthropocene. The idea of the Anthropocene began as an idea about the need for a new geological epoch and underwent unsupervised interdisciplinary expansion due to climate change integrating itself into the core of the discourse. In contrast to the NAUI which was specifically engineered to increase interdisciplinarity, the I use keyword co-occurrence networks to measure how the Anthropocene discourse increases its interdisciplinarity through unsupervised expansion after climate change becomes a core keyword within the network and behaves as an anchor point for new disciplines to connect and join the discourse.
The scope of interdisciplinarity increases again with the final case study about the field of evolutionary medicine. Evolutionary medicine is a case of engineered interdisciplinary integration between evolutionary biology and medicine. The primary goal of evolutionary medicine is to better understand "why we get sick" through the lens of evolutionary biology. This makes it an excellent candidate to understand large-scale interdisciplinarity. I show through multiple type of networks and metadata analyses that evolutionary medicine successfully integrates the concepts of evolutionary biology into medicine.
By increasing our knowledge of interdisciplinarity at various scales and how it behaves in different initial conditions, we are better able to understand the elusive nature of innovation. Interdisciplinary can mean different things depending on how its defined. I show that a pluralistic approach to defining and measuring interdisciplinarity is not only appropriate but necessary if our goal is to increase interdisciplinarity, the frequency of innovations, and our understanding of the evolution of knowledge.
ContributorsPainter, Deryc T (Author) / Laubichler, Manfred D (Thesis advisor) / Maienschein, Jane (Committee member) / Bliss, Nadya T (Committee member) / Simeone, Michael P (Committee member) / Nesse, Randolph M. (Committee member) / Arizona State University (Publisher)
Created2019