Matching Items (1,628)
Filtering by
- Creators: School of Life Sciences
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
The semiconductor field of Photovoltaics (PV) has experienced tremendous growth, requiring curricula to consider ways to promote student success. One major barrier to success students may face when learning PV is the development of misconceptions. The purpose of this work was to determine the presence and prevalence of misconceptions students may have for three PV semiconductor phenomena; Diffusion, Drift and Excitation. These phenomena are emergent, a class of phenomena that have certain characteristics. In emergent phenomena, the individual entities in the phenomena interact and aggregate to form a self-organizing pattern that can be observed at a higher level. Learners develop a different type of misconception for these phenomena, an emergent misconception. Participants (N=41) completed a written protocol. The pilot study utilized half of these protocols (n = 20) to determine the presence of both general and emergent misconceptions for the three phenomena. Once the presence of both general and emergent misconceptions was confirmed, all protocols (N=41) were analyzed to determine the presence and prevalence of general and emergent misconceptions, and to note any relationships among these misconceptions (full study). Through written protocol analysis of participants' responses, numerous codes emerged from the data for both general and emergent misconceptions. General and emergent misconceptions were found in 80% and 55% of participants' responses, respectively. General misconceptions indicated limited understandings of chemical bonding, electricity and magnetism, energy, and the nature of science. Participants also described the phenomena using teleological, predictable, and causal traits, indicating participants had misconceptions regarding the emergent aspects of the phenomena. For both general and emergent misconceptions, relationships were observed between similar misconceptions within and across the three phenomena, and differences in misconceptions were observed across the phenomena. Overall, the presence and prevalence of both general and emergent misconceptions indicates that learners have limited understandings of the physical and emergent mechanisms for the phenomena. Even though additional work is required, the identification of specific misconceptions can be utilized to enhance semiconductor and PV course content. Specifically, changes can be made to curriculum in order to limit the formation of misconceptions as well as promote conceptual change.
ContributorsNelson, Katherine G (Author) / Brem, Sarah K. (Thesis advisor) / Mckenna, Ann F (Thesis advisor) / Hilpert, Jonathan (Committee member) / Honsberg, Christiana (Committee member) / Husman, Jenefer (Committee member) / Arizona State University (Publisher)
Created2014
Description
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
Description
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
Description
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.
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
Description
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
Description
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
Description
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
Description
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
Description
Although open access publishing has been available since 1998, we know little regarding scholars' perceptions and practices toward publishing in open access outlets, especially in the social science community. Open access publishing has been slow to penetrate the field of education, yet the potential impact of open access could make this publishing method an important innovation for understanding how to support the publishing needs of education scholars. To discover these perceptions and practices that education scholars have toward open access publishing, a 51-item web-based survey was provided to scholars with known investment in open access publishing. Participants had either (1) a publication in one of 34 United States education-based open access journals or (2) a manuscript submitted for peer review in one of those 34 journals. The survey contained subscales focusing on contemporary open access themes--issues identified through a comprehensive analysis of the major outlets for scholarly news in education. Through open and axial coding, several themes were extracted. They included rights and ease of access, ease of publishing, costs, support from colleagues and administrators, and perceived quality of open access outlets. The survey showed moderate to high reliability using Cronbach's alpha. Correlation and MANOVA testing showed significant results in scholars' teaching status and peer review status of manuscripts. Additional findings indicated that non-tenured education scholars responded more strongly than tenured scholars to issues related to rights and ease of access, promotion, and quality. Scholars with manuscripts currently in peer review felt strongly about themes of rights and ease of access, cost, and promotion. The results imply the following: (1) If scholars want their research read by a wider audience, they should publish in open access journals. (2) Pro-open access policies and procedures could gain more support by ensuring open access is promoted to non-tenured scholars seeking to publish. (3) More research, forums, discussions, and education about open access need to occur in greater abundance to continue to ameliorate scholars' views about the benefits of open access publishing. (4) Institutions and departments can offer their unconditional support for open access publishing as a method of meeting promotion/tenure requirements.
ContributorsEllingford, Lori Michelle (Author) / Brem, Sarah K. (Thesis advisor) / Husman, Jenefer (Committee member) / Ganesh, Tirupalavanam G. (Committee member) / Duggan, Mary Anne (Committee member) / Arizona State University (Publisher)
Created2012