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- Creators: Arizona State University
- Creators: Piemonte, Nicole
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
Medical practice surrounding tuberculosis (TB) treatment in two nineteenth-century Scottish charitable hospitals reveals that in developing empirically-positioned constructs of this and related diseases, medical practitioners drew upon social assumptions about women and the working classes, thus reinforcing rather than shedding cultural notions of who becomes ill and why. TB is a social disease, its distribution determined by relationships among human groups; primary among these is the patient-practitioner relationship, owing to the social role of medical treatment in restoring the ill to both health and society. To clarify the influence of cultural context upon the evolution of medical constructs of TB, I examined Glasgow Royal Infirmary (GRI) and Royal Infirmary of Edinburgh (RIE) ward journals, admissions registers, and institution management records from 1794 through 1905. Medical practice at the turn of the nineteenth century was dominated by observation and questioning of the patient, concordant with conceptions of physicians' labor as mental rather than physical. This changed with the introduction of the stethoscope in the 1820s, which together with the dissection of the poor allowed by the 1832 Anatomy Act ushered in disease concepts emphasizing pathological anatomy. Relationships between patient and practitioner also altered at this time, exhibiting distrust and medical dominance. The mid-Victorian era was notable for clinicians' increasing interest in immorality's contributions to ill health, absent in earlier practice and linked to conceptions of women and the working classes as inherently pathological. In 1882, discovery of the tubercle bacillus challenged existing nutritional, hereditary, and environmental explanations for TB. Although practitioners utilized bacteriological methods, this discovery did not revolutionize diagnosis or treatment. Rather, these older models were incorporated with perceived behavioral, environmental, and biological degradation of the working classes, rendering marginalized groups "soil" prepared for the "seeds" of disease -- at risk, but also to blame. This framework, in which marginalized groups contribute to their increased risk for disease through refusal to accord with hegemonically-established "healthy" behavior, persists. As a result, meaningful change in TB rates will need to address these longstanding contributions of social inequality to Western medical treatment.
ContributorsFarnbach Pearson, Amy Walker (Author) / Buikstra, Jane E. (Thesis advisor) / Fuchs, Rachel G (Committee member) / Brewis Slade, Alexandra (Committee member) / Roberts, Charlotte A. (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
At present, the ideological bias in the human enhancement debate holds that opponents to human enhancement are primarily techno-conservatives who, lacking any reasonable, systematic account of why we ought to be so opposed, simply resort to a sort of fear-mongering and anti-meliorism. This dissertation means to counteract said bias by offering just such an account. Offered herein is a heuristic explanation of how, given a thorough understanding of enhancement both as a technology and as an attitude, we can predict a likely future of rampant commodification and dehumanization of man, and a veritable assault on human flourishing.
ContributorsMilleson, Valerye Michelle (Author) / McGregor, Joan (Thesis advisor) / Robert, Jason (Committee member) / French, Peter (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
The American Psychiatric Association's Diagnostic and Statistical Manual, the official guidebook to psychiatric diagnosis in America, currently exempts the recently bereaved from being diagnosed with depression unless their experiences are marked by feelings of extreme worthlessness, significant functional impairment, psychotic symptoms, psychomotor retardation, or suicidal ideation. Ordinary symptoms of depression, such as sleeplessness or loss of appetite, are considered healthy, functional emotional responses to the loss of a loved one. The bereavement exemption is slated for removal in the upcoming fifth edition of the Diagnostic and Statistical Manual, functionally redefining the emotional distress of bereavement as a psychiatric disorder. This study employs genealogical analysis to expose the multiplicity of forces that shape modern psychiatry and the ways that the redefinition of depression functions strategically in the social negotiation of truth and power. Under the guise of etiological and prescriptive neutrality, the redefinition of depression promotes a deeply biological model of psychiatric disorder, a medicalized understanding of human emotion, and a pharmacological approach to the treatment of emotional distress. Through genealogical analysis, this project seeks to enable informed, meaningful ethico-political responses to these developments.
ContributorsMeeth, John (Author) / Edson, Belle (Thesis advisor) / Palazzolo, Kellie (Thesis advisor) / Quinlivan, Raena (Committee member) / Arizona State University (Publisher)
Created2011
Description
Emerging adulthood--a developmental point in the life span (usually between the ages of 18-25) during which children no longer see themselves as adolescents but would not yet consider themselves adults--is marked by identity exploration and discovering new life directions. When emerging adults find themselves serving as caregivers for their parent during a time when they would normally be establishing autonomy and exploring new directions, they may feel conflicted by their desire to both care for their parent and maintain a sense of independence. Thus, using a multiple-method research design that includes both an autoethnography and a qualitative content analysis of young adult caregivers' online posts, this study intends to uncover the dialectical tensions (the interplay of communicative tensions within a relationship) an emerging adult daughter experiences in her relationship with her mother as she serves as her caregiver, experiences her death, and grieves her passing by analyzing the author's personal narrative. To provide a deeper understanding of the dialectical nature of the emerging adult caregiver experience, the study was extended with an examination of other young caregivers' experiences, drawn from online forums, to explore how they encounter tensions within their own relationships with their parents. An analysis of the personal narrative revealed one primary dialectical tension, separation-connection, and three interrelated tensions--predictability-change, openness-closedness, and holding on-letting go--that seemed to influence this primary tension. Results of the qualitative content analysis revealed that other caregivers experienced one primary dialectical tension, sacrifice-reward, and two additional, interrelated tensions: independence-dependence and presence-absence. A comparison of the findings from each methodological approach revealed both similarities and differences in experiences of emerging adult caregivers.
ContributorsPiemonte, Nicole Marie (Author) / Fisher, Carla (Thesis advisor) / Kelley, Douglas (Committee member) / Waldron, Vincent (Committee member) / Wolf, Bianca (Committee member) / Arizona State University (Publisher)
Created2010
Description
Death with Dignity is a concept that initially began as a set of philosophical and ethical principles that sought to define what it meant to die a "good" death that was reasonable to the person experiencing the dying process. This dying process is terminal illness, or any condition that cannot be cured and who's ultimate prognosis is death. Today, Death with Dignity still embodies this, but it is also a set of legal and medical treatments and practices that can be used to aid terminal patients in accomplishing a "good" death. The Death with Dignity treatment options that are chiefly discussed in this study are patient withdrawal of care, patient control of pain medications, and physician-assisted suicide. Physician-assisted suicide is legal in six states in the US excluding Arizona. Considering that Oregon is the first state to pass a Death with Dignity Act and that it is the precedent for all other Acts, this study sought to understand the differences in perception of physician-assisted suicide between Arizona and Oregon in the pursuit of clarifying what barriers are still in place in Arizona to passing a Death with Dignity act. To ask the question of "Do physicians and ethics committee members in Arizona support Death with Dignity in the forms of patient control of pain medications, withdrawal of treatment, and physician-assisted suicide?", a literature review was conducted to determine important national and local perceptions of physician-assisted suicide and Death with Dignity, a 14-question, structured survey was created with the identified concerns, and it was distributed to Arizona health care workers by email and in person. This survey was approved by ASU's Institutional Review Board. This survey found that 100% of participants would vote for a Death with Dignity Act in Arizona if it were on a ballot measure. 76% of participants would aid a terminally-ill and eligible patient in physician-assisted suicide under some circumstances if it were legal in Arizona, and 24% of participants would never aid a patient in physician-assisted suicide. The concerns with physician-assisted suicide that were marked most important by Arizona healthcare workers were that hospice is a better option for the terminally ill and that physician-assisted suicide may be misused with disadvantaged persons. The most important factors of terminal illness that influence views of physician-assisted suicide marked by Arizona healthcare workers were the amount of pain the patient is expected to experience in the end of life, the amount of pain that can be relieved for the patient, the expected quality of life of the patient, and the patient's right to autonomy in healthcare. The significant differences between Oregon and Arizona in this study were the importance of expected mental decline of patient, patient's wishes that differ from family's, and hospice being a better option than suicide in influencing views of physician-assisted suicide. These differences could be deemed hurdles to Death with Dignity legislation in Arizona. This study recommended addressing those differences in public education and medical education and seeking Death with Dignity legislation via ballot measure.
ContributorsCohan, Hailey Elizabeth (Author) / Brian, Jennifer (Thesis director) / Piemonte, Nicole (Committee member) / Stevenson, Christine (Committee member) / School of Life Sciences (Contributor, Contributor) / W. P. Carey School of Business (Contributor) / Barrett, The Honors College (Contributor)
Created2017-05
Description
Deeply entrenched eugenic values overdetermine who is treated with care and dignity and who is treated with violence. These eugenic values inform and are informed by settler colonialism, patriarchy, and ableism. Carceral locales such as nursing homes, hospitals, and jails enact specific kinds of harm onto disabled people and rely on their convoluted and self-serving bureaucratic processes to evade responsibility. Given my interest in the indivisibility of carceral logics, spaces of capture, and ableism, my focus in this dissertation is both the real-life contexts of the individual incidents and the systemic, cross-institutional patterns evident in each of the three incidents analyzed.I take a modified case study approach to three incidents in which disabled people in carceral locales experience tremendous harm. The first incident is about the gross medical neglect and rape of a San Carlos Apache disabled woman at a skilled nursing care facility in Phoenix, Arizona. The second incident occurred at a hospital in Austin, Texas where doctors worked hastily to killing a Black disabled man within only days of his arrival and change his code status to Do Not Resuscitate against his family’s will. The third incident focuses on duty of care violations and disability-based discrimination against a white disabled man at a Chicago jail. These situations, when analyzed individually and with/against one another, identify important connections relating to institutional power and cross-institution patterns of harm. I find that the paternal dynamics of medical[ized] facilities, the pervading anti-disability sentiments in US society, and bureaucratic violence make accountability and justice impossible.
ContributorsPeer, Victoria (Author) / Swadener, Beth B (Thesis advisor) / Vega, Sujey (Committee member) / Gomez, Alan E (Committee member) / Arizona State University (Publisher)
Created2022
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