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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

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
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Lung Cancer Alliance, a nonprofit organization, released the "No One Deserves to Die" advertising campaign in June 2012. The campaign visuals presented a clean, simple message to the public: the stigma associated with lung cancer drives marginalization of lung cancer patients. Lung Cancer Alliance (LCA) asserts that negative public attitude

Lung Cancer Alliance, a nonprofit organization, released the "No One Deserves to Die" advertising campaign in June 2012. The campaign visuals presented a clean, simple message to the public: the stigma associated with lung cancer drives marginalization of lung cancer patients. Lung Cancer Alliance (LCA) asserts that negative public attitude toward lung cancer stems from unacknowledged moral judgments that generate 'stigma.' The campaign materials are meant to expose and challenge these common public category-making processes that occur when subconsciously evaluating lung cancer patients. These processes involve comparison, perception of difference, and exclusion. The campaign implies that society sees suffering of lung cancer patients as indicative of moral failure, thus, not warranting assistance from society, which leads to marginalization of the diseased. Attributing to society a morally laden view of the disease, the campaign extends this view to its logical end and makes it explicit: lung cancer patients no longer deserve to live because they themselves caused the disease (by smoking). This judgment and resulting marginalization is, according to LCA, evident in the ways lung cancer patients are marginalized relative to other diseases via minimal research funding, high- mortality rates and low awareness of the disease. Therefore, society commits an injustice against those with lung cancer. This research analyzes the relationship between disease, identity-making, and responsibilities within society as represented by this stigma framework. LCA asserts that society understands lung cancer in terms of stigma, and advocates that society's understanding of lung cancer should be shifted from a stigma framework toward a medical framework. Analysis of identity-making and responsibility encoded in both frameworks contributes to evaluation of the significance of reframing this disease. One aim of this thesis is to explore the relationship between these frameworks in medical sociology. The results show a complex interaction that suggest trading one frame for another will not destigmatize the lung cancer patient. Those interactions cause tangible harms, such as high mortality rates, and there are important implications for other communities that experience a stigmatized disease.
ContributorsCalvelage, Victoria (Author) / Hurlbut, J. Benjamin (Thesis advisor) / Maienschein, Jane (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2013
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Teaching evolution has been shown to be a challenge for faculty, in both K-12 and postsecondary education. Many of these challenges stem from perceived conflicts not only between religion and evolution, but also faculty beliefs about religion, it's compatibility with evolutionary theory, and it's proper role in classroom curriculum. Studies

Teaching evolution has been shown to be a challenge for faculty, in both K-12 and postsecondary education. Many of these challenges stem from perceived conflicts not only between religion and evolution, but also faculty beliefs about religion, it's compatibility with evolutionary theory, and it's proper role in classroom curriculum. Studies suggest that if educators engage with students' religious beliefs and identity, this may help students have positive attitudes towards evolution. The aim of this study was to reveal attitudes and beliefs professors have about addressing religion and providing religious scientist role models to students when teaching evolution. 15 semi-structured interviews of tenured biology professors were conducted at a large Midwestern universiy regarding their beliefs, experiences, and strategies teaching evolution and particularly, their willingness to address religion in a class section on evolution. Following a qualitative analysis of transcripts, professors did not agree on whether or not it is their job to help students accept evolution (although the majority said it is not), nor did they agree on a definition of "acceptance of evolution". Professors are willing to engage in students' religious beliefs, if this would help their students accept evolution. Finally, professors perceived many challenges to engaging students' religious beliefs in a science classroom such as the appropriateness of the material for a science class, large class sizes, and time constraints. Given the results of this study, the author concludes that instructors must come to a consensus about their goals as biology educators as well as what "acceptance of evolution" means, before they can realistically apply the engagement of student's religious beliefs and identity as an educational strategy.
ContributorsBarnes, Maryann Elizabeth (Author) / Brownell, Sara E (Thesis advisor) / Brem, Sarah K. (Thesis advisor) / Lynch, John M. (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2014
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Blind and visually impaired individuals have historically demonstrated a low participation in the fields of science, engineering, mathematics, and technology (STEM). This low participation is reflected in both their education and career choices. Despite the establishment of the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act

Blind and visually impaired individuals have historically demonstrated a low participation in the fields of science, engineering, mathematics, and technology (STEM). This low participation is reflected in both their education and career choices. Despite the establishment of the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA), blind and visually impaired (BVI) students continue to academically fall below the level of their sighted peers in the areas of science and math. Although this deficit is created by many factors, this study focuses on the lack of adequate accessible image based materials. Traditional methods for creating accessible image materials for the vision impaired have included detailed verbal descriptions accompanying an image or conversion into a simplified tactile graphic. It is very common that no substitute materials will be provided to students within STEM courses because they are image rich disciplines and often include a large number images, diagrams and charts. Additionally, images that are translated into text or simplified into basic line drawings are frequently inadequate because they rely on the interpretations of resource personnel who do not have expertise in STEM. Within this study, a method to create a new type of tactile 3D image was developed using High Density Polyethylene (HDPE) and Computer Numeric Control (CNC) milling. These tactile image boards preserve high levels of detail when compared to the original print image. To determine the discernibility and effectiveness of tactile images, these customizable boards were tested in various

university classrooms as well as in participation studies which included BVI and sighted students. Results from these studies indicate that tactile images are discernable and were found to improve performance in lab exercises as much as 60% for those with visual impairment. Incorporating tactile HDPE 3D images into a classroom setting was shown to increase the interest, participation and performance of BVI students suggesting that this type of 3D tactile image should be incorporated into STEM classes to increase the participation of these students and improve the level of training they receive in science and math.
ContributorsGonzales, Ashleigh (Author) / Baluch, Debra P (Thesis advisor) / Maienschein, Jane (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2015
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The advent of advanced reproductive technologies has sparked a number of ethical concerns regarding the practices of reproductive tourism and commercial gestational surrogacy. In the past few decades, reproductive tourism has become a global industry in which individuals or couples travel, usually across borders, to gain access to reproductive services.

The advent of advanced reproductive technologies has sparked a number of ethical concerns regarding the practices of reproductive tourism and commercial gestational surrogacy. In the past few decades, reproductive tourism has become a global industry in which individuals or couples travel, usually across borders, to gain access to reproductive services. This marketable field has expanded commercial gestational surrogacy--defined by a contractual relationship between an intending couple and gestational surrogate in which the surrogate has no genetic tie to fetus--to take on transnational complexities. India has experienced extreme growth due to a preferable combination of western educated doctors and extremely low medical costs. However, a slew of ethical issues have been brought to the forefront: the big ones manifesting as concern for reduction of a woman's worth to her reproductive capabilities along with concern for exploitation of third world women. This project will be based exclusively on literature review and serves primarily as a call for cultural competency and understanding the circumstances that gestational surrogates are faced with before implementing policy regulating commercial gestational surrogacy. The paper argues that issues of exploitation and commodification hinge on constructions of motherhood. It is critical to define and understand definitions of motherhood and how these definitions affect a woman's approach to reproduction within the cultural context of a gestational surrogate. This paper follows the case study of the Akanksha Infertility Clinic in northern India, a surrogacy clinic housing around 50 Indian surrogates. The findings of the project invokes the critical significance of narrative ethics, which help Indian surrogates construct the practice of surrogacy so that it fits into cultural comprehensions of Indian motherhood--in which motherhood is selfless, significant, and shared.
ContributorsMoorthy, Anjali (Author) / Robert, Jason S (Thesis advisor) / Hurlbut, Benjamin (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2011
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Within ethics, a number of scholars advocate an interdisciplinary approach of combining the two traditionally different professions of science and philosophy with the confidence that this collaboration will be a mutually beneficial experience. Current ethicist-scientist interactions include embedded-ethicists and research ethics consultation services. Both methods are employed with the hope

Within ethics, a number of scholars advocate an interdisciplinary approach of combining the two traditionally different professions of science and philosophy with the confidence that this collaboration will be a mutually beneficial experience. Current ethicist-scientist interactions include embedded-ethicists and research ethics consultation services. Both methods are employed with the hope that they will reduce social and ethical problems that could arise from scientific research, and enhance the reflective capacity of investigative teams. While much effort has been put forth in the endeavor of creating ethicist-scientist interactions, there remains opportunity to refine these new interaction models to make them more robust. There is need for ethicists to understand the context of ethical decision-making in the laboratory. By extension, before interacting with scientists in a research lab, research ethicists ought to have the ability to understand the science and also be familiar with the different factors that influence scientific research, such as funding, productivity requirements, time constraints, politics of laboratories and institutional reward structures. Through literature review and the analysis of qualitative data obtained from the ethnographic study in a neuroscience laboratory, this thesis explores the strengths and weaknesses of ethicist-scientist interactions and aims to understand the culture, traditions and values of this community and their perspectives on their role as scientists and their relationship to ethics. This study shows that the quantity and quality of ethics discussions in the lab are limited and dictated by time constraints and minimal incentives. Other influencing factors are the researchers' perspectives on ethics and how they view their role as a scientist in relation to the public.
ContributorsMin, Gyongeun Catherine (Author) / Ellison, Karin (Thesis advisor) / Robert, Jason S (Thesis advisor) / Minteer, Ben A (Committee member) / Arizona State University (Publisher)
Created2012
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With new trends in drug development and testing, it must be determined whether the current state of balance of ethos (the moral norm) and regula (the legal framework) can successfully protect patients while keeping the door to scientific innovation open. The rise of the Clinician Investigator (CI) in both academic

With new trends in drug development and testing, it must be determined whether the current state of balance of ethos (the moral norm) and regula (the legal framework) can successfully protect patients while keeping the door to scientific innovation open. The rise of the Clinician Investigator (CI) in both academic and private research introduces a challenge to the protection of subjects in the conflicting dual role of physician and scientist. Despite the constant evolution of regulation and ethical standards, questions about the roles' combined effectiveness in relation to this challenge persist. Carl Elliot describes the suicide of a patient-subject enrolled in an industry-funded physician-run anti-psychotic pharmaceutical drug trial in a 2010 Mother Jones article. Elliot provides a personal account of discrepancies seen in the ethical principles of beneficence, respect for subjects and justice. Through analysis of the problems presented in the case as a model for potential dangers in clinical research, the effectiveness of ethics and law in protecting human subjects is examined. While the lag between ethical standard and regulation has historically shown to cause similar issues, the misconception of current regulation and ethical standards may be contributing to the decrease in subject protections. After IRB approval of subject protections in the research protocol, CIs have been shown to downgrade their responsibility to maintaining ethos through the course of the trial. And, despite their experience in patient-centered ethos as a physician, CIs may be inclined to substitute these values for the ethos of a researcher, with the goal to avoid therapeutic misconception. Maintaining personal responsibility for subjects beyond regulatory structure, and promoting the welfare of the subjects in regards to the ethical standard of research investigators, will provide added security for subjects and decrease opportunity for exploitation in future research.
ContributorsWaddell, Amanda (Author) / Robert, Jason S (Thesis advisor) / Ellison, Karin (Committee member) / Fuse Brown, Erin C. (Committee member) / Arizona State University (Publisher)
Created2012
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Despite the minor differences in the inclusiveness of the word, there is a general assumption among the scientific community that the 'pursuit of knowledge' is the most fundamental element in defining the word 'science'. However, a closer examination of how science is being conducted in modern-day South Korea reveals a

Despite the minor differences in the inclusiveness of the word, there is a general assumption among the scientific community that the 'pursuit of knowledge' is the most fundamental element in defining the word 'science'. However, a closer examination of how science is being conducted in modern-day South Korea reveals a value system starkly different from the value of knowledge. By analyzing the political discourse of the South Korean policymakers, mass media, and government documents, this study examines the definition of science in South Korea. The analysis revealed that the Korean science, informed by the cultural, historical, and societal contexts, is largely focused on the values of national economic prosperity, international competitiveness, and international reputation of the country, overshadowing other values like the pursuit of knowledge or even individual rights. The identification of the new value system in South Korean science deviating from the traditional definition of science implies that there must be other definitions of science that also deviates, and that even in the Western world, the definition of science may yield similar deviations upon closer examination. The compatibility of the South Korean brand of science to the international scientific community also implies that a categorical quality is encompassing these different contextual definitions of science.
ContributorsHyun, Byunghun (Author) / Hurlbut, Ben (Thesis advisor) / Maienschein, Jane (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2011
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Researchers in the twentieth and twenty-first centuries identify the study of the intrinsic and external factors that influence human aging as senescence. A commonly held belief in the year 2015 is that at least some kinds of cells can replicate over long periods or even indefinitely, thereby meaning the cell

Researchers in the twentieth and twenty-first centuries identify the study of the intrinsic and external factors that influence human aging as senescence. A commonly held belief in the year 2015 is that at least some kinds of cells can replicate over long periods or even indefinitely, thereby meaning the cell does not undergo senescence (also known as replicative senescence) and is considered immortal. This study aims to provide information to answer the following question: While some scientists claim they can indefinitely culture a stem cell line in vitro, what are the consequences of those culturing practices? An analysis of a cluster of articles from the Embryo Project Encyclopedia provides information to suggest possible solutions to some potential problems in cell culturing, recognition of benefits for existing or historical culturing practices, and identification of gaps in scientific knowledge that warrant further research. Recent research suggests that hESCs, and immortalized cell lines in general, do not escape the effects of senescence. While there exists a constant change in the practices of cell culturing, a large portion of scientists still rely on practices established before modern senescence research: research that seems to suggest that cultured hESCs, among other immortal cell lines, are not truly immortal.
ContributorsBartlett, Zane (Author) / Maienschein, Jane (Thesis advisor) / Ellison, Karin (Committee member) / Hurlbut, James (Committee member) / Arizona State University (Publisher)
Created2015
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Zoos are a unique collection-based institution with deep roots in the social structure of modern society. From their beginnings as elite menageries to display power or wealth, they have evolved into public institutions committed to providing exemplary animal care, and recreational and educational opportunities for visitors. More recently, zoos have

Zoos are a unique collection-based institution with deep roots in the social structure of modern society. From their beginnings as elite menageries to display power or wealth, they have evolved into public institutions committed to providing exemplary animal care, and recreational and educational opportunities for visitors. More recently, zoos have developed a series of significant conservation programs and partnerships around the globe, efforts that have proved vital to saving endangered species such as the Arabian oryx (Oryx leucoryx) and California condor (Gymnogyps californianus), among other species.

Intrinsic to the development of modern zoo designs are the interwoven concerns of naturalism and animal welfare. Animal welfare, in particular, has become the paramount responsibility for professionally run zoological institutions as they seek to become centers of conservation and education without compromising animal wellbeing. Animal welfare and naturalism (understood as a design feature in zoo exhibits) are typically harmonious objectives, but these goals have occasionally clashed in implementation. While animal welfare and naturalism are defined in various (and not always consistent) ways in the literature, in-depth interviews of leading professionals and scholars in the zoo community and multi-dimensional case studies of exemplary, accredited institutions (including the Phoenix Zoo, the San Diego Zoo, Woodland Park Zoo and Arizona-Sonora Desert Museum) provide unique insight into the shifting meaning of these terms and how welfare and naturalism have and continue to shape the

development of modern zoo enclosures. This study concludes by suggesting a possible

future trajectory for innovative and alternative zoo designs that incorporate both animal welfare and naturalism without sacrificing either goal.
ContributorsBoyle, Kristen E (Author) / Minteer, Ben A (Thesis advisor) / Ellison, Karin (Committee member) / Cunningham, Stan (Committee member) / Arizona State University (Publisher)
Created2017