Matching Items (6)
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
This thesis examines congressional discussions of media technologies at two distinct historical moments in order to see how Congress evaluated and sought to regulate technologies with the potential to reshape public modes of thought and communication. Specifically, it examines congressional discussions centered around Television and the Fairness Doctrine, as well as Facebook and the recent scandal involving Cambridge Analytica by asking how Congress has understood what is at stake while attempting to regulate emerging media technologies. Specifically, it probes questions such as: What is assumed about the technologies while attempting to legislate them? What is treated as subject to assessment and revision; what is given priority for consideration over other alternate angles? How do the legal and political contexts in which these discussions are framed impact legislative proceedings and society’s ways of knowing and relating to the world?
While these moments are only a subset of such moments in US history, and Congress is only one of a range of forums in which such political discussions can take place, the thesis focuses on these cases because not only are they important in themselves, but also they reveal issues and approaches that are not unique to these moments. The thesis draws on the on the work of Neil Postman, who argues that the emergence and subsequent dominance of media like television have the capacity to alter the manner in which we think and thus have profound effects on the texture and character of American civic life. In this vein it uses a comparison of how lawmakers attempted to regulate television and social media platforms like Facebook to explore whether and how lawmakers have attended to the capacity of these media to shape public thought.
The thesis demonstrates that understanding of media’s epistemological influence is only ever tacitly acknowledged by lawmakers and is not regarded as an important consideration during evaluative legislative efforts. Instead, Congress tends to focus on matters that are of immediate concern and pragmatic in nature, eclipsing questions about how these technologies fundamentally alter our perceptions of the world and the ways we as individuals and as a society relate to it. By not taking such questions into account during our legislative proceedings, the thesis argues, we cede opportunities to employ and regulate technologies to better serve our cultural ideals and remain susceptible to unwanted forms of cultural erosion mediated by technologies.
While these moments are only a subset of such moments in US history, and Congress is only one of a range of forums in which such political discussions can take place, the thesis focuses on these cases because not only are they important in themselves, but also they reveal issues and approaches that are not unique to these moments. The thesis draws on the on the work of Neil Postman, who argues that the emergence and subsequent dominance of media like television have the capacity to alter the manner in which we think and thus have profound effects on the texture and character of American civic life. In this vein it uses a comparison of how lawmakers attempted to regulate television and social media platforms like Facebook to explore whether and how lawmakers have attended to the capacity of these media to shape public thought.
The thesis demonstrates that understanding of media’s epistemological influence is only ever tacitly acknowledged by lawmakers and is not regarded as an important consideration during evaluative legislative efforts. Instead, Congress tends to focus on matters that are of immediate concern and pragmatic in nature, eclipsing questions about how these technologies fundamentally alter our perceptions of the world and the ways we as individuals and as a society relate to it. By not taking such questions into account during our legislative proceedings, the thesis argues, we cede opportunities to employ and regulate technologies to better serve our cultural ideals and remain susceptible to unwanted forms of cultural erosion mediated by technologies.
ContributorsOberhaus, Jack M (Author) / Hurlbut, J. Benjamin (Thesis director) / Zachary, Gregg (Committee member) / Maienschein, Jane (Committee member) / School of Life Sciences (Contributor) / Barrett, The Honors College (Contributor)
Created2019-05
Description
This dissertation investigates the relationship between the universal aspirationsof technology and the particularity of place, by way of close participant observation with biotechnology companies in the San Francisco Bay Area. Its central claim is that the aspiration to placelessness in the development of science and technology operates as material configurations, modes of subjectivation, and historical conditions particular to places. Following Foucault’s late work in ethics, I conduct a series of sustained investigations into the reflective modes of critique biotechnologists make in thinking of and being in the San Francisco Bay Area. I show the ways the aspiration to placelessness exists in place at four different vantage points: the organization, the city, the broader cultural history of the region, and the practices of self-cultivation undertaken by technologists. Within biotechnology organizations, biological work is digitized and automated only through an intensification of bespoke material infrastructures, physical labor, and tacit institutional knowledge. Biotechnology organizations have come into existence through a history of settler colonial erasure, industrial devastation, post-war industrial decay, and urban renewal in Bay Area industrial suburbs and neighborhoods. A nostalgic imagination of the broader San Francisco Bay Area and its history of counterculture become mobilized as an antidote to the felt lifelessness of these forms of urban renewal and technological order and incorporated back into engineering practice. Finally, the technologist themselves must aspire to placelessness, in ways critiqued by local landless people’s movements who offer an alternative ethic to place in their imperative to gentrifiers to “move home with your parents.” I conclude by reflecting on the ways interlocutors at each of these vantage points are actively exploring the creation of more enduring relationships to place in the face of the unintended but intensified forms of social suffering in zones of technological innovation.
ContributorsHammang, Anne (Author) / Bennett, Gaymon (Thesis advisor) / Hurlbut, J. Benjamin (Committee member) / Frow, Emma (Committee member) / Arizona State University (Publisher)
Created2022
Description
Endocrine disruptors are chemicals that interact with the hormone system to negative effect. They ‘disrupt’ normal processes to cause diseases like vaginal cancer and obesity, reproductive issues like t-shaped uteri and infertility, and developmental abnormalities like spina bifida and cleft palate. These chemicals are ubiquitous in our daily lives, components in everything from toothpaste to microwave popcorn to plastic water bottles. My dissertation looks at the history, science, and regulation of these impactful substances in order to answer the question of how endocrine disruptors appeared, got interpreted by different groups, and what role science played in the process. My analysis reveals that endocrine disruptors followed a unique science policy trajectory in the US, rapidly going from their proposal in 1991 to their federal regulation in 1996, even amid intense and majority scientific disagreement over whether the substances existed at all. That trajectory resulted from the work of a small number of scientist-activists who constructed a concept and category as scientific, social, and regulatory. By playing actors from each sphere against each other and advancing a very specific scientific narrative that fit into a regulatory and social window of opportunity in the 1990s, those scientist-activists made endocrine disruptors a national issue that few could ignore. Those actions resulted in the Endocrine Disruptor Screening Program, a heavily-criticized and ineffective regulatory program. My dissertation tells a story of the past that informs the present. In 2018, the work of researchers, public media, and policymakers in the 1990s continues to play out, evident in the deep scientific division over endocrine disrupting effects and the inability of the European Union to settle on even a definition of endocrine disruptors for regulation purposes.
ContributorsAbboud, Alexis J (Author) / Maienschein, Jane A (Thesis advisor) / Crow, Michael M. (Committee member) / Hurlbut, J. Benjamin (Committee member) / Marchant, Gary E (Committee member) / Arizona State University (Publisher)
Created2018
Description
Researchers at ASU have identified opportunities to reduce risk to human health and the environment by changing the composition and disposal practices of polymers. Although plastics have benefited society in innumerable ways, the resulting omnipresence of plastics in society has led to concerns about the hazards of constant, low-level exposure and the search for options for sustainable disposal.
The team used examples from public health and medicine-sectors that have particularly benefited from polymer applications, to highlight the benefits of using plastics in certain applications and to pinpoint opportunities for reducing risks from all plastics’ uses. These include phasing out polymers that contain components associated with negative health effects, diminishing the need to dispose of large quantities of plastic through reduction and reuse, and promoting and developing less harmful alternatives to conventional plastics.
For additional discussion please see the publication Plastics and Environmental Health: the Road Ahead available online here.
ContributorsNorth, Emily (Author) / Halden, Rolf U. (Author) / Chester, Mikhail Vin (Author) / Hurlbut, J. Benjamin (Author) / Arizona State University. School of Sustainable Engineering and the Built Environment (Contributor) / Arizona State University. Center for Earth Systems Engineering and Management (Contributor)