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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
Corporations in biomedicine hold significant power and influence, in both political and personal spheres. The decisions these companies make about ethics are critically important, as they help determine what products are developed, how they are developed, how they are promoted, and potentially even how they are regulated. In the last fifteen years, for-profit private companies have been assembling bioethics committees to help resolve dilemmas that require informed deliberation about ethical, legal, scientific, and economic considerations. Private sector bioethics committees represent an important innovation in the governance of emerging technologies, with corporations taking a lead role in deciding what is ethically appropriate or problematic. And yet, we know very little about these committees, including their structures, memberships, mandates, authority, and impact. Drawing on an extensive literature review and qualitative analysis of semi-structured interviews with executives, scientists and board members, this dissertation provides an in-depth analysis of the Ethics and Public Policy Board at SmithKline Beecham, the Ethics Advisory Board at Advanced Cell Technology, and the Bioethics Committee at Eli Lilly and offers insights about how ideas of bioethics and governance are currently imagined and enacted within corporations. The SmithKline Beecham board was the first private sector bioethics committee; its mandate was to explore, in a comprehensive and balanced analysis, the ethics of macro trends in science and technology. The Advanced Cell Technology board was created to be like a watchdog for the company, to prevent them from making major errors. The Eli Lilly board is different than the others in that it is made up mostly of internal employees and does research ethics consultations within the company. These private sector bioethics committees evaluate and construct new boundaries between their private interests and the public values they claim to promote. Findings from this dissertation show that criticisms of private sector bioethics that focus narrowly on financial conflicts of interest and a lack of transparency obscure analysis of the ideas about governance (about expertise, credibility and authority) that emerge from these structures and hamper serious debate about the possible impacts of moving ethical deliberation from the public to the private sector.
ContributorsBrian, Jennifer (Author) / Robert, Jason S (Thesis advisor) / Maienschein, Jane (Committee member) / Hurlbut, James B (Committee member) / Sarewitz, Daniel (Committee member) / Brown, Mark B. (Committee member) / Moreno, Jonathan D. (Committee member) / Arizona State University (Publisher)
Created2012
Description
The advent of advanced reproductive technologies has sparked a number of ethical concerns regarding the practices of reproductive tourism and commercial gestational surrogacy. In the past few decades, reproductive tourism has become a global industry in which individuals or couples travel, usually across borders, to gain access to reproductive services. This marketable field has expanded commercial gestational surrogacy--defined by a contractual relationship between an intending couple and gestational surrogate in which the surrogate has no genetic tie to fetus--to take on transnational complexities. India has experienced extreme growth due to a preferable combination of western educated doctors and extremely low medical costs. However, a slew of ethical issues have been brought to the forefront: the big ones manifesting as concern for reduction of a woman's worth to her reproductive capabilities along with concern for exploitation of third world women. This project will be based exclusively on literature review and serves primarily as a call for cultural competency and understanding the circumstances that gestational surrogates are faced with before implementing policy regulating commercial gestational surrogacy. The paper argues that issues of exploitation and commodification hinge on constructions of motherhood. It is critical to define and understand definitions of motherhood and how these definitions affect a woman's approach to reproduction within the cultural context of a gestational surrogate. This paper follows the case study of the Akanksha Infertility Clinic in northern India, a surrogacy clinic housing around 50 Indian surrogates. The findings of the project invokes the critical significance of narrative ethics, which help Indian surrogates construct the practice of surrogacy so that it fits into cultural comprehensions of Indian motherhood--in which motherhood is selfless, significant, and shared.
ContributorsMoorthy, Anjali (Author) / Robert, Jason S (Thesis advisor) / Hurlbut, Benjamin (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2011
Description
Within ethics, a number of scholars advocate an interdisciplinary approach of combining the two traditionally different professions of science and philosophy with the confidence that this collaboration will be a mutually beneficial experience. Current ethicist-scientist interactions include embedded-ethicists and research ethics consultation services. Both methods are employed with the hope that they will reduce social and ethical problems that could arise from scientific research, and enhance the reflective capacity of investigative teams. While much effort has been put forth in the endeavor of creating ethicist-scientist interactions, there remains opportunity to refine these new interaction models to make them more robust. There is need for ethicists to understand the context of ethical decision-making in the laboratory. By extension, before interacting with scientists in a research lab, research ethicists ought to have the ability to understand the science and also be familiar with the different factors that influence scientific research, such as funding, productivity requirements, time constraints, politics of laboratories and institutional reward structures. Through literature review and the analysis of qualitative data obtained from the ethnographic study in a neuroscience laboratory, this thesis explores the strengths and weaknesses of ethicist-scientist interactions and aims to understand the culture, traditions and values of this community and their perspectives on their role as scientists and their relationship to ethics. This study shows that the quantity and quality of ethics discussions in the lab are limited and dictated by time constraints and minimal incentives. Other influencing factors are the researchers' perspectives on ethics and how they view their role as a scientist in relation to the public.
ContributorsMin, Gyongeun Catherine (Author) / Ellison, Karin (Thesis advisor) / Robert, Jason S (Thesis advisor) / Minteer, Ben A (Committee member) / Arizona State University (Publisher)
Created2012
Description
In the past century, a number of technological projects have been undertaken as grand solutions to social problems. In the so called century of biology, this technological world view focuses on biomedical advances. The President of the United States, who once called for nuclear weapons and space exploration, now calls for new biotechnologies, such as genomics, individualized medicine, and nanotechnology, which will improve the world by improving our biological lives. Portrayed as the Manhattan Project of the late 20th Century, the Human Genome Project (HGP) not only undertook the science of sequencing the human genome but also the ethics of it. For this thesis I ask how the HGP did this; what was the range of possibilities of goods and evils imagined by the HGP; and what, if anything, was left out. I show that the Ethical, Legal, and Social Implications (ELSI) research program of the HGP was inscribed with the competencies of the professional field of bioethics, which had lent itself useful for governing biomedical science and technology earlier in the 20th century. Drawing on a sociological framework for understanding the development of professional bioethics, I describe the development of ELSI, and I note how the given-in-advance boundaries between authorized/unauthorized questions shaped its formation and biased technologically based conceptualizations of social problems and potential solutions. In this sense, the HGP and ELSI served both as the ends of policy and as instruments of self-legitimation, thus re-inscribing and enacting the structures for these powerful sociotechnical imaginaries. I engage the HGP and ELSI through historical, sociological, and political philosophical analysis, by examining their immediate context of the NIH, the meso level of professional/disciplinary bioethics, and the larger context of American democracy and modernity. My argument is simultaneously a claim about how questions are asked and how knowledge and expertise are made, exposing the relationship between the HGP and ELSI as a mutually constitutive and reciprocally related form of coproduction of knowledge and social structures. I finish by arguing that ELSI is in a better position than bioethics to carry out the original project of that field, i.e., to provide a space to elucidate certain institutionally authorized questions about science and technology. Finally, I venture into making a prophecy about the future of ELSI and bioethics: that the former will replace the latter as a locus for only formally rational and thin ethical debates.
ContributorsCarvalho, Tito (Author) / Robert, Jason S (Thesis advisor) / Ellison, Karin D (Committee member) / Hurlbut, James B (Committee member) / Arizona State University (Publisher)
Created2012
Description
In the past decade, research on the motor control side of neuroprosthetics has steadily gained momentum. However, modern research in prosthetic development supplements a focus on motor control with a concentration on sensory feedback. Simulating sensation is a central issue because without sensory capabilities, the sophistication of the most advanced motor control system fails to reach its full potential. This research is an effort toward the development of sensory feedback specifically for neuroprosthetic hands. The present aim of this work is to understand the processing and representation of cutaneous sensation by evaluating performance and neural activity in somatosensory cortex (SI) during a grasp task. A non-human primate (Macaca mulatta) was trained to reach out and grasp textured instrumented objects with a precision grip. Two different textures for the objects were used, 100% cotton cloth and 60-grade sandpaper, and the target object was presented at two different orientations. Of the 167 cells that were isolated for this experiment, only 42 were recorded while the subject executed a few blocks of successful trials for both textures. These latter cells were used in this study's statistical analysis. Of these, 37 units (88%) exhibited statistically significant task related activity. Twenty-two units (52%) exhibited statistically significant tuning to texture, and 16 units (38%) exhibited statistically significant tuning to posture. Ten of the cells (24%) exhibited statistically significant tuning to both texture and posture. These data suggest that single units in somatosensory cortex can encode multiple phenomena such as texture and posture. However, if this information is to be used to provide sensory feedback for a prosthesis, scientists must learn to further parse cortical activity to discover how to induce specific modalities of sensation. Future experiments should therefore be developed that probe more variables and that more systematically and comprehensively scan somatosensory cortex. This will allow researchers to seek out the existence or non-existence of cortical pockets reserved for certain modalities of sensation, which will be valuable in learning how to later provide appropriate sensory feedback for a prosthesis through cortical stimulation.
ContributorsNaufel, Stephanie (Author) / Helms Tillery, Stephen I (Thesis advisor) / Santos, Veronica J (Thesis advisor) / Buneo, Christopher A (Committee member) / Robert, Jason S (Committee member) / Arizona State University (Publisher)
Created2011
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
Each of the three essays in this dissertation examine an aspect of health or health care in society. Areas explored within this dissertation include health care as a public value, proscriptive genomic policies, and socio-technical futures of the human lifespan. The first essay explores different forms of health care systems and attempts to understand who believes access to health care is a public value. Using a survey of more than 2,000 U.S. citizens, this study presents statistically significant empirical evidence regarding values and other attributes that predict the probability of individuals within age-based cohorts identifying access to health care as a public value. In the second essay, a menu of policy recommendations for federal regulators is proposed in order to address the lack of uniformity in current state laws concerning genetic information. The policy recommendations consider genetic information as property, privacy protections for re-identifying de-identified genomic information, the establishment of guidelines for law enforcement agencies to access nonforensic databases in criminal investigations, and anti-piracy protections for individuals and their genetic information. The third and final essay explores the socio-technical artifacts of the current health care system for documenting both life and death to understand the potential for altering the future of insurance, the health care delivery system, and individual health outcomes. Through the development of a complex scenario, this essay explores the long-term socio-technical futures of implementing a technology that continuously collects and stores genetic, environmental, and social information from life to death of individual participants.
ContributorsWade, Nathaniel Lane (Author) / Bozeman, Barry (Thesis advisor) / Sarewitz, Daniel (Committee member) / Cook-Deegan, Robert (Committee member) / Arizona State University (Publisher)
Created2019
Description
This thesis explores how we can harness new technology to improve our relationship with companion animals and promote shelter animal welfare. The study looked into using the photo-sharing application Instagram to increase adoption rates at the Arizona Animal Welfare League & SPCA. An Instagram page was created and managed for the shelter, and data was collected regarding the impact the page had on adoption rates. The results were mixed, but overall it was determined that the Instagram page has unique value for the shelter.
ContributorsBautista-Hobin, Elena Maria (Author) / Minteer, Ben (Thesis director) / Ellison, Karin (Committee member) / Morefield, Michael (Committee member) / Barrett, The Honors College (Contributor) / School of Life Sciences (Contributor)
Created2015-05
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