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- Genre: Academic theses
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
Gender and sex are often conflated. Our laws, policies, and even science establish sex and gender as intrinsically linked and dimorphic in nature. This dissertation examines the relationship between sex and gender and the repercussions of this linked dimorphism in the realms of law, politics, and science. Chapter One identifies the legal climate for changing one's sexual identity post-surgical reassignment. It pays particular attention to the ability of postsurgical transsexuals to marry in their acquired sex. Chapter Two considers the process for identifying the sex of athletes for the purposes of participation in sex-segregated athletic events, specifically the role of testing and standards for categorization. Chapter Three explores the process of identifying and assigning the sex of intersex children. Chapter Four examines the process of prenatal sex selection and its ethical implications. Chapter Four also offers an anticipatory governance framework to address these implications.
ContributorsParsi, John (Author) / Crittenden, Jack (Thesis advisor) / Guston, David H. (Committee member) / Marchant, Gary (Committee member) / Arizona State University (Publisher)
Created2013
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
This dissertation engages with the philosophical, psychological, and scientific literature on two important topics: empathy and human enhancement. My two broad goals are to clarify the role of empathy in ascriptions of responsibility and to consider how enhanced empathy might alter those ascriptions.
First, I argue that empathy is best thought of as a two-component process. The first component is what I call the rational component of empathy (RCE). RCE is necessary for moral responsibility as it allows us to put ourselves in another's shoes and to realize that we would want help (or not to be harmed) if we were in the other's place. The second component is what I call the emotive component of empathy (ECE). ECE is usually an automatic response to witnessing others in distress. Expanding on Michael Slote's view that moral distinctions track degrees of empathy, I argue that it is ECE that varies in strength depending on our relationship to specific people.
Second, I argue that in order to achieve Peter Singer's goal an "expanding circle" of care for all human beings, it will be necessary to use some form of artificial empathy enhancement. Within this context, I try to show that empathy enhancement is 1) a reasonably foreseeable possibility within the next decade or so, and 2) morally defensible.
Third, I argue that philosophers who argue that psychopaths are not morally responsible for their actions are mistaken. As I see it, these philosophers have erred in treating empathy as a singular concept and concluding that because psychopaths lack empathy they cannot be held morally responsible for their actions. The distinction between RCE and ECE allows us to say that psychopaths lack one component of empathy, ECE, but are still responsible for their actions because they clearly have a functional RCE.
Fourth, I paint a portrait of the landscape of responsibility with respect to the enhanced empath. I argue that the enhanced empath would be subject to an expanded sphere of special obligations such that acts that were previously supererogatory become, prima facie, morally obligatory.
First, I argue that empathy is best thought of as a two-component process. The first component is what I call the rational component of empathy (RCE). RCE is necessary for moral responsibility as it allows us to put ourselves in another's shoes and to realize that we would want help (or not to be harmed) if we were in the other's place. The second component is what I call the emotive component of empathy (ECE). ECE is usually an automatic response to witnessing others in distress. Expanding on Michael Slote's view that moral distinctions track degrees of empathy, I argue that it is ECE that varies in strength depending on our relationship to specific people.
Second, I argue that in order to achieve Peter Singer's goal an "expanding circle" of care for all human beings, it will be necessary to use some form of artificial empathy enhancement. Within this context, I try to show that empathy enhancement is 1) a reasonably foreseeable possibility within the next decade or so, and 2) morally defensible.
Third, I argue that philosophers who argue that psychopaths are not morally responsible for their actions are mistaken. As I see it, these philosophers have erred in treating empathy as a singular concept and concluding that because psychopaths lack empathy they cannot be held morally responsible for their actions. The distinction between RCE and ECE allows us to say that psychopaths lack one component of empathy, ECE, but are still responsible for their actions because they clearly have a functional RCE.
Fourth, I paint a portrait of the landscape of responsibility with respect to the enhanced empath. I argue that the enhanced empath would be subject to an expanded sphere of special obligations such that acts that were previously supererogatory become, prima facie, morally obligatory.
ContributorsGurney, David (Author) / McGregor, Joan (Thesis advisor) / Brake, Elizabeth (Committee member) / Marchant, Gary (Committee member) / Tsosie, Rebecca (Committee member) / Arizona State University (Publisher)
Created2016
Description
Neuroimaging has appeared in the courtroom as a type of `evidence' to support claims about whether or not criminals should be held accountable for their crimes. Yet the ability to abstract notions of culpability and criminal behavior with confidence from these imagines is unclear. As there remains much to be discovered in the relationship between personal responsibility, criminal behavior, and neurological abnormalities, questions have been raised toward neuroimaging as an appropriate means to validate these claims.
This project explores the limits and legitimacy of neuroimaging as a means of understanding behavior and culpability in determining appropriate criminal sentencing. It highlights key philosophical issues surrounding the ability to use neuroimaging to support this process, and proposes a method of ensuring their proper use. By engaging case studies and a thought experiment, this project illustrates the circumstances in which neuroimaging may assist in identifying particular characteristics relevant for criminal sentencing.
I argue that it is not a question of whether or not neuroimaging itself holds validity in determining a criminals guilt or motives, but rather a proper application of the issue is to focus on the way in which information regarding these images is communicated from the `expert' scientists to the `non-expert' making decisions about the sentence that are most important. Those who are considering this information's relevance, a judge or jury, are typically not well versed in criminal neuroscience and interpreting the significance of different images. I advocate the way in which this information is communicated from the scientist-informer to the decision-maker parallels in importance to its actual meaning.
As a solution, I engage Roger Pielke's model of honest brokering as a solution to ensure the appropriate use of neuroimaging in determining criminal responsibility and sentencing. A thought experiment follows to highlight the limits of science, engage philosophical repercussions, and illustrate honest brokering as a means of resolution. To achieve this, a hypothetical dialogue reminiscent of Kenneth Schaffner's `tools for talking' with behavioral geneticists and courtroom professionals will exemplify these ideas.
This project explores the limits and legitimacy of neuroimaging as a means of understanding behavior and culpability in determining appropriate criminal sentencing. It highlights key philosophical issues surrounding the ability to use neuroimaging to support this process, and proposes a method of ensuring their proper use. By engaging case studies and a thought experiment, this project illustrates the circumstances in which neuroimaging may assist in identifying particular characteristics relevant for criminal sentencing.
I argue that it is not a question of whether or not neuroimaging itself holds validity in determining a criminals guilt or motives, but rather a proper application of the issue is to focus on the way in which information regarding these images is communicated from the `expert' scientists to the `non-expert' making decisions about the sentence that are most important. Those who are considering this information's relevance, a judge or jury, are typically not well versed in criminal neuroscience and interpreting the significance of different images. I advocate the way in which this information is communicated from the scientist-informer to the decision-maker parallels in importance to its actual meaning.
As a solution, I engage Roger Pielke's model of honest brokering as a solution to ensure the appropriate use of neuroimaging in determining criminal responsibility and sentencing. A thought experiment follows to highlight the limits of science, engage philosophical repercussions, and illustrate honest brokering as a means of resolution. To achieve this, a hypothetical dialogue reminiscent of Kenneth Schaffner's `tools for talking' with behavioral geneticists and courtroom professionals will exemplify these ideas.
ContributorsTaddeo, Sarah (Author) / Robert, Jason S (Thesis advisor) / Marchant, Gary (Committee member) / Hurlbut, James B (Committee member) / Arizona State University (Publisher)
Created2014
Description
A novel clustered regularly interspaced short palindromic repeats/CRISPR-associated (CRISPR/Cas) tool for simultaneous gene editing and regulation was designed and tested. This study used the CRISPR-associated protein 9 (Cas9) endonuclease in complex with a 14-nucleotide (nt) guide RNA (gRNA) to repress a gene of interest using the Krüppel associated box (KRAB) domain, while also performing a separate gene modification using a 20-nt gRNA targeted to a reporter vector. DNA Ligase IV (LIGIV) was chosen as the target for gene repression, given its role in nonhomologous end joining, a common DNA repair process that competes with the more precise homology-directed repair (HDR).
To test for gene editing, a 20-nt gRNA was designed to target a disrupted enhanced green fluorescent protein (EGFP) gene present in a reporter vector. After the gRNA introduced a double-stranded break, cells attempted to repair the cut site via HDR using a DNA template within the reporter vector. In the event of successful gene editing, the EGFP sequence was restored to a functional state and green fluorescence was detectable by flow cytometry. To achieve gene repression, a 14-nt gRNA was designed to target LIGIV. The gRNA included a com protein recruitment domain, which recruited a Com-KRAB fusion protein to facilitate gene repression via chromatin modification of LIGIV. Quantitative polymerase chain reaction was used to quantify repression.
This study expanded upon earlier advancements, offering a novel and versatile approach to genetic modification and transcriptional regulation using CRISPR/Cas9. The overall results show that both gene editing and repression were occurring, thereby providing support for a novel CRISPR/Cas system capable of simultaneous gene modification and regulation. Such a system may enhance the genome engineering capabilities of researchers, benefit disease research, and improve the precision with which gene editing is performed.
To test for gene editing, a 20-nt gRNA was designed to target a disrupted enhanced green fluorescent protein (EGFP) gene present in a reporter vector. After the gRNA introduced a double-stranded break, cells attempted to repair the cut site via HDR using a DNA template within the reporter vector. In the event of successful gene editing, the EGFP sequence was restored to a functional state and green fluorescence was detectable by flow cytometry. To achieve gene repression, a 14-nt gRNA was designed to target LIGIV. The gRNA included a com protein recruitment domain, which recruited a Com-KRAB fusion protein to facilitate gene repression via chromatin modification of LIGIV. Quantitative polymerase chain reaction was used to quantify repression.
This study expanded upon earlier advancements, offering a novel and versatile approach to genetic modification and transcriptional regulation using CRISPR/Cas9. The overall results show that both gene editing and repression were occurring, thereby providing support for a novel CRISPR/Cas system capable of simultaneous gene modification and regulation. Such a system may enhance the genome engineering capabilities of researchers, benefit disease research, and improve the precision with which gene editing is performed.
ContributorsChapman, Jennifer E (Author) / Kiani, Samira (Thesis advisor) / Ugarova, Tatiana (Thesis advisor) / Marchant, Gary (Committee member) / Arizona State University (Publisher)
Created2018
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
Many researchers have seen the value blockchain can add to the field of voting and many protocols have been proposed to allow voting to be conducted in a way that takes advantage of blockchains distributed and immutable structure. While blockchains immutable structure can take the place of paper records in preventing tampering it by itself is insufficient to construct a trustworthy voting system with eligibility, privacy, verifiability, and fairness requirements. Many of the protocols which strive to keep voters votes confidential, but also allow for verifiability and eligibility requirements rely on either a blind signature provided by a central authority to provide compliance with these requirements or ring signatures to prove membership in the set of voters. A blind signature issued by a central authority introduces a potential vulnerability as it allows a corrupt central authority to pass a large number of forged ballots into the mix without any detection. Ring signatures on the other hand tend to be overly resource intensive to allow for practical usage in large voting sets. The research in this thesis focuses on improving the trustworthiness of electronic voting systems by providing possible ways of avoiding or detecting corrupt central authorities while still relying upon the benefits of efficiency the blind signature provides.
ContributorsAnderson, Brandon David (Author) / Yau, Stephen S. (Thesis advisor) / Dasgupta, Partha (Committee member) / Marchant, Gary (Committee member) / Arizona State University (Publisher)
Created2020
Description
The 1973 Supreme Court case Roe v. Wade was a significant event in the story of fetal personhood—the story of whether embryos and fetuses are legal persons. Roe legalized abortion care in the United States (US). However, the story of fetal personhood began long before the 1970s. People have been talking about embryos, fetuses, and their status in science, the law, and society for centuries. I studied the history of fetal personhood in the United States, tracing its origins from Ancient Rome and Medieval England to its first appearance in a US courtroom in 1884 and then to the Supreme Court’s decision in 1973.
But this isn’t a history of events—of names and dates and typical details. This is a history of words. In the twenty-first century, words used to discuss embryos and fetuses are split. Some people use humanizing language like “unborn children” and “human life.” Others use technical words like “embryos” and “fetuses.” I studied what words people used historically. I charted how words moved from science to the public to the law, and how they impacted court rulings on fetal personhood.
The use of certain words nudged courts to grant additional rights to embryos and fetuses. In the 1960s, writers began describing the science of development, using words like “unborn child” and humanizing descriptions to make embryos and fetuses seem like people already born. That helped build an idea of embryos and fetuses as having “life” before birth. When people began asking courts to legalize abortion care in the 1970s, attorneys on the opposite side argued that embryos and fetuses were “human life,” and that that “life” began at conception.
In those cases, “life” was biologically defined as when sperm fertilized egg, but it was on that biological definition “life” that judges improperly rested their legal rulings that embryos and fetuses were “potential human life” states had a duty to protect. It wasn’t legal personhood, but it was a legal status that let states pass laws restricting abortion care and punishing pregnant people for their behavior, trends that threaten people’s lives and autonomy in the twenty-first century.
But this isn’t a history of events—of names and dates and typical details. This is a history of words. In the twenty-first century, words used to discuss embryos and fetuses are split. Some people use humanizing language like “unborn children” and “human life.” Others use technical words like “embryos” and “fetuses.” I studied what words people used historically. I charted how words moved from science to the public to the law, and how they impacted court rulings on fetal personhood.
The use of certain words nudged courts to grant additional rights to embryos and fetuses. In the 1960s, writers began describing the science of development, using words like “unborn child” and humanizing descriptions to make embryos and fetuses seem like people already born. That helped build an idea of embryos and fetuses as having “life” before birth. When people began asking courts to legalize abortion care in the 1970s, attorneys on the opposite side argued that embryos and fetuses were “human life,” and that that “life” began at conception.
In those cases, “life” was biologically defined as when sperm fertilized egg, but it was on that biological definition “life” that judges improperly rested their legal rulings that embryos and fetuses were “potential human life” states had a duty to protect. It wasn’t legal personhood, but it was a legal status that let states pass laws restricting abortion care and punishing pregnant people for their behavior, trends that threaten people’s lives and autonomy in the twenty-first century.
ContributorsAbboud, Carolina (Author) / Maienschein, Jane (Thesis advisor) / Justice, George (Committee member) / Marchant, Gary (Committee member) / Pyne, Stephen (Committee member) / Arizona State University (Publisher)
Created2020