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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 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
Today in the U.S. the narrative of the “bad drug” has become quite a familiar account. There is an ever-growing collection of pharmaceutical products whose safety and efficacy has been debunked through the scandalous exposure of violations of integrity on the part of researchers, lapses in procedure and judgment on the part of the FDA, and reckless profiteering on the part of big pharma. However, a closer look reveals that the oversights and loopholes depicted in the bad drug narrative are not incidental failures of an otherwise intact, effective system. Rather, bad drugs, like good drugs, are a product of normal operations of the system; the same processes, actors, and influences manifest in both. The aim of this project is to shed light on these processes, actors, and influences at work in drug normalization by interrogating the peculiar case of the drug Lupron. Lupron exhibits all of the controversial features of the “bad drug” narrative but has remained an endorsed and embraced staple of the infertility industry. This contradiction situates Lupron to expose a number of the contingencies on which drug normalization rests more generally. In order to put forth an explanatory model for drug normalization, three such contingencies are described in detail for the case at hand: the nature of drug regulation, the structures and value that underpin the medical categorization of diseases, and the inextricability of post-medicine from the forces of industry. These contingencies provide some explanatory power for understanding not only the retention of Lupron but the ways in which all drugs are produced, validated, and perpetuated in a society.
ContributorsStevenson, Christine, M.S (Author) / Brian, Jennifer (Thesis advisor) / Hurlbut, Benjamin (Thesis advisor) / Maienschein, Jane (Committee member) / Arizona State University (Publisher)
Created2015
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
Description
Medical policies, practices, and definitions do not exist solely in the clinical realm; they show up in the lived experiences of patients. This research examines how people with the chronic illness called myalgic encephalomyelitis (ME) define their own illness experiences. They have situated knowledge about their illness onset, search for care, and clinical encounters. Their knowledge complicates and challenges the existing norms in clinical practice and medical discourse, as the experience of searching for care with ME reveals weaknesses in a system that is focused on acute care. Patient narratives reveal institutional patterns that obstruct access to medical care, such as disbelief from clinicians and lack of training in chronic illness protocols. They also reveal patterns in physician behavior that indicate the likelihood of receiving effective care. These patient narratives serve as a basis for continued examination of ME as well as further reconstruction of medical practice and procedure.
ContributorsCutler, Carmen (Author) / Oliverio, Annamaria (Thesis advisor) / Mann, Annika (Thesis advisor) / Behl, Natasha (Committee member) / Arizona State University (Publisher)
Created2019
Description
Noninvasive prenatal testing using cell-free fetal DNA (CffDNA) testing is a rapidly developing area in prenatal diagnosis. Fetal genetic testing can occur with a simple maternal blood sample, since CffDNA can be found in maternal plasma. Thus, no harm is caused to mother or fetus to obtain this genetic information, providing significant benefits for those users. How the test should be integrated in existing prenatal programs has yet to be seen. CffDNA testing is an exciting technology and has attracted attention from many stakeholders, yet the lack of regulation and guidance has left legal, ethical, and social questions unanswered. This paper outlines a number of those issues expressed in the present literature on the matter.
ContributorsVeeder, Shaylynn Lee (Author) / Marchant, Gary (Thesis director) / Robert, Jason (Committee member) / Milleson, Valerye (Committee member) / Barrett, The Honors College (Contributor) / School of Social Transformation (Contributor) / School of Politics and Global Studies (Contributor) / Sandra Day O'Connor College of Law (Contributor) / Department of Psychology (Contributor)
Created2014-05
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