Matching Items (11)
Filtering by
- All Subjects: Medical Ethics
- All Subjects: digital humanities
- Creators: Ellison, Karin
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
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
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
Advocacy groups work across many aspects of “death with dignity” practice and treatment, and provide insight across multiple aspects of “death with dignity”. This study argues that key advocacy groups in the American death with dignity movement influenced the broader conceptualization of death with dignity in a way that makes patients more able to achieve it. This influence has been a dynamic process across different periods of practice starting the discussion of “death with dignity” in 1985 through today, although this thesis extends only to 2011. The question in this study is how do the three main historical advocacy groups in the US: the Hemlock Society, Compassion in Dying, and Compassion and Choices, conceptualize death with dignity with regards to patient and doctor relationship, legal and policy factors, and medical technologies and protocols? This study found that the Hemlock Society (1980-2005) characterized death with dignity as a terminally ill patient being able to “self-deliver” from suffering via autoeuthanasia regardless of medical community approval or legality. Compassion in Dying (1993-2007) characterized death with dignity as involved advocacy work with terminal patients and their communities to pursue palliative care and hospice up to the point of assisted death. This organization was also involved in the passing of Oregon Death with Dignity Act. Compassion and Choices (2007-present) characterized death with dignity similarly to Compassion in Dying but also advocated for adequate management of pain and suffering symptoms in palliative care to prevent people from desiring death over the illness. Conceptualizing death with dignity is important for understanding why patients want death with dignity and better accommodating their end of life needs when they are suffering with terminal illness.
ContributorsCohan, Hailey Elizabeth (Author) / Ellison, Karin (Thesis advisor) / O'Neil, Erica (Committee member) / Piemonte, Nicole (Committee member) / Arizona State University (Publisher)
Created2019
Visualizing the Embryo: Establishing Procedures for Digital image Production with the Embryo Project
Description
The Embryo Project (EP) Encyclopedia is an online database that has consolidated hundreds of development-related research articles, with subcategories addressing the context of such research. These articles are written by undergraduate students, graduate students, and professionals in the fields of biology, history, and other fields, and are intended for a diverse audience of readers from both biology and non-biology related backgrounds. As the EP addresses a public audience, it is imperative to utilize all possible means to share the information that each article covers. Until 2013, the EP Encyclopedia did not present images in articles as no formal protocol for image development existed. I have created an image style guide that outlines the basic steps of creating and submitting an image that can complement an EP article and can enhance a reader's understanding of the discussed concept. In creating this style guide, I investigated similar protocols used by other scientific journals and medical professionals. I also used different programs and based my style guide off of the procedures I used in Adobe Illustrator CS6.
ContributorsHamidi, Neekta (Author) / Maienschein, Jane (Thesis director) / Crowe, Nathan (Committee member) / O'Neil, Erica (Committee member) / Barrett, The Honors College (Contributor) / Harrington Bioengineering Program (Contributor)
Created2013-05
Description
Vaccinations are important for preventing influenza infection. Maximizing vaccination uptake rates (80-90%) is crucial in generating herd immunity and preventing infection incidence. Vaccination of healthcare professionals (HCP) against influenza is vital to infection control in healthcare settings, given their consistent exposure to high-risk patients like: those with compromised immune systems, children, and the elderly (Johnson & Talbot, 2011). Though vaccination is vital in disease prevention, influenza vaccination uptake among HCP is low overall (50% on average) (Pearson et al., 2006). Mandatory vaccination policies result in HCP influenza vaccination uptake rates substantially higher than opt-in influenza vaccination campaigns (90% vs. 60%). Therefore, influenza vaccination should be mandatory for HCP in order to best prevent influenza infection in healthcare settings. Many HCP cite individual objections to influenza vaccination rooted in personal doubts and ethical concerns, not best available scientific evidence. Nevertheless, HCP ethical responsibility to their patients and work environments to prevent and lower influenza infection incidence overrules such individual objections. Additionally, mandatory HCP influenza vaccination policies respect HCP autonomy via including medical and religious exemption clauses. While vaccination as a prevention method for influenza is logically sound, individuals’ actions are not always rooted in logic. Therefore, I analyze HCP perceptions and actions toward influenza vaccination in an effort to better explain low HCP uptake rates of the influenza vaccine and individual objections to influenza vaccination. Such analysis can aid in gaining HCP trust when implementing mandatory HCP influenza vaccination policies. In summary, mandatory HCP influenza vaccination policies are ethically justified, effective, scientifically-supported method of maximizing HCP influenza vaccine uptake and minimizing the spread of the influenza virus within healthcare settlings.
ContributorsGur-Arie, Rachel (Author) / Maienschein, Jane (Thesis advisor) / Hurlbut, Ben (Thesis advisor) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2016
Description
American Indian literature is replete with language that refers to broken or hollow promises the US government has made to American Indians, one of the most prominent being that the US government has not kept its promises regarding health services for American Indians/Alaska Natives (AI/AN). Some commenters refer to treaties between tribes and the US government as the origin of the promise for health services to AI/AN. Others point to the trust relationship between the sovereign nations of American Indian tribes and the US government, while still others assert that the Snyder Act of 1921 or the Indian Health Care Improvement Act (IHCIA) contained the promise for health care. While the US has provided some form of health care for AI/AN since the country was in its infancy, and continues to do so through the Indian Health Service, the promise of health services for AI/AN is not explicit.
Philosophers have articulated that a promise contains a moral obligation to fulfill it because of others’ expectations created by that promise. As the US government made its first promises in early treaties with AI/AN tribes and subsequently made promises in the years since, it is morally obligated to fulfill those promises, be they lying promises or not, because of resulting expectations. Yet, the US government has historically acted to restrict the rights of AI/AN—rights that include access to health services—through assimilation, separation, or termination policies. Further, the policies of the US government have kept the AI/AN populations socioeconomically impoverished, dependent on the US government for basic needs, and susceptible to health-compromising conditions.
Using case studies, this dissertation looks not only at the policies and events that directly affected health services and health status, but also at how those policies and events contributed to health outcomes and the expectations of AI/AN. Given the history of the US government in fulfilling (or not fulfilling) its promises, this dissertation examines the expectations of AI/AN for their own future health outcomes under the policy of self-governance.
Philosophers have articulated that a promise contains a moral obligation to fulfill it because of others’ expectations created by that promise. As the US government made its first promises in early treaties with AI/AN tribes and subsequently made promises in the years since, it is morally obligated to fulfill those promises, be they lying promises or not, because of resulting expectations. Yet, the US government has historically acted to restrict the rights of AI/AN—rights that include access to health services—through assimilation, separation, or termination policies. Further, the policies of the US government have kept the AI/AN populations socioeconomically impoverished, dependent on the US government for basic needs, and susceptible to health-compromising conditions.
Using case studies, this dissertation looks not only at the policies and events that directly affected health services and health status, but also at how those policies and events contributed to health outcomes and the expectations of AI/AN. Given the history of the US government in fulfilling (or not fulfilling) its promises, this dissertation examines the expectations of AI/AN for their own future health outcomes under the policy of self-governance.
ContributorsDrago, Mary (Author) / Maienschein, Jane (Thesis advisor) / Ellison, Karin (Committee member) / Herkert, Joseph (Committee member) / Hurlbut, James (Committee member) / Robert, Jason (Committee member) / Trujillo, Michael (Committee member) / Arizona State University (Publisher)
Created2016
Description
Elizabeth Grumbach, the project manager of the Institute for Humanities Research's Digital Humanities Initiative, shares methodologies and best practices for designing a digital humanities project. The workshop will offer participants an introduction to digital humanities fundamentals, specifically tools and methodologies. Participants explore technologies and platforms that allow scholars of all skills levels to engage with digital humanities methods. Participants will be introduced to a variety of tools (including mapping, visualization, data analytics, and multimedia digital publication platforms), and how and why to choose specific applications, platforms, and tools based on project needs.
ContributorsGrumbach, Elizabeth (Author)
Created2018-09-26
Description
Informed Consent is a ubiquitous way of enshrining choice in the United States which regulates social relations in domains as varied as health, research, access to institutions, and prisons. Informed consent describes an imagined epistemic relationship between right knowledge and legitimate choice, where judgements of capacitation determine whether a person is the right sort of person to take up knowledge which will render them agential under conditions of asymmetrical power. It has been developed over and over to solve problems of injustice, where the injustice in question is understood in terms of undue infringement on individual autonomy, and the logic of informed consent is re-invented to reframe the problem at hand as a rightful matter of individual choice. It is imagined to respect autonomy, and to perform a transformative "moral magic" that makes the forbidden quotidian. This dissertation develops this account of informed consent through a series of cases, each of which explicates different aspects of the technopolitics of informed consent. It begins with genetic counseling as a paradigm case in the logic of informed consent: a well-developed field that emerged to inform people about genetics and genomics in the interest not only of individual reproductive choice, but in opposition to eugenic shaping of populations through genetic knowledge. Next, pro- and anti- abortion deployments of informed consent illustrate an epistemology of information itself, which is understood to agentialize as well as to serve as a site for refusing choice to those deemed incapacitated. Third, liability waivers and requests for student informed consent on university campuses during the pandemic show informed consent to be a tool for the exercise of biopolitics and, in particular, for making responsible subjects. Finally, civil libertarian opposition to migrant genetic testing on the grounds that migrants weren’t asked for consent demonstrates a tight coupling between consent, imaginations of just state-subject relations, and what it means to be recognized as a person. Ultimately, this dissertation argues for a practice of attention that sees informed consent as an important site for the exercise of power and offers frameworks for analyzing it as such.
ContributorsDietz, Elizabeth A (Author) / Hurlbut, Ben (Thesis advisor) / Reynolds, Joel M (Committee member) / Brian, Jennifer (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2023
Description
Computational tools in the digital humanities often either work on the macro-scale, enabling researchers to analyze huge amounts of data, or on the micro-scale, supporting scholars in the interpretation and analysis of individual documents. The proposed research system that was developed in the context of this dissertation ("Quadriga System") works to bridge these two extremes by offering tools to support close reading and interpretation of texts, while at the same time providing a means for collaboration and data collection that could lead to analyses based on big datasets. In the field of history of science, researchers usually use unstructured data such as texts or images. To computationally analyze such data, it first has to be transformed into a machine-understandable format. The Quadriga System is based on the idea to represent texts as graphs of contextualized triples (or quadruples). Those graphs (or networks) can then be mathematically analyzed and visualized. This dissertation describes two projects that use the Quadriga System for the analysis and exploration of texts and the creation of social networks. Furthermore, a model for digital humanities education is proposed that brings together students from the humanities and computer science in order to develop user-oriented, innovative tools, methods, and infrastructures.
ContributorsDamerow, Julia (Author) / Laubichler, Manfred (Thesis advisor) / Maienschein, Jane (Thesis advisor) / Creath, Richard (Committee member) / Ellison, Karin (Committee member) / Hooper, Wallace (Committee member) / Renn, Jürgen (Committee member) / Arizona State University (Publisher)
Created2014