Matching Items (20)
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- All Subjects: Arizona
- All Subjects: Medical Ethics
- Creators: Maienschein, Jane
- Creators: Economics Program in CLAS
- Member of: Theses and Dissertations
- Status: Published
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
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
Nearly seven decades ago, the US government established grants to the states for family planning and acknowledged the importance of enabling all women to plan and space their pregnancies, regardless of personal income. Since then, publicly-funded family planning services have empowered millions of women, men, and adolescents to achieve their childbearing goals. Despite the recognized importance of subsidized family planning, services remain funded in a piecemeal fashion. Since the 1940s there have been numerous federal funding sources for family planning, including the Title V Maternal and Child Health Services Program, Office of Economic Opportunity grants, Title XX Social Services Program, Title X Family Planning Program, Medicaid, and the State Children’s Health Insurance Program, alongside state and local support. Spending guidelines allow states varying degrees of flexibility regarding allocation, to best serve the local population. With nearly two billion dollars spent annually on subsidized family planning, criticism often arises surrounding effective local program spending and state politics influencing grant allocation. Political tension regarding the amount of control states should have in managing federal funding is exacerbated in the context of family planning, which has become increasingly controversial among social conservatives in the twenty-first century. This thesis examines how Arizona’s political, geographic, cultural, and ethnic landscape shaped the state management of federal family planning funding since the early twentieth century. Using an extensive literature review, archival research, and oral history interviews, this thesis demonstrates the unique way Arizona state agencies and nonprofits collaborated to maximize the use of federal family planning grants, effectively reaching the most residents possible. That partnership allowed Arizona providers to reduce geographic barriers to family planning in a rural, frontier state. The social and political history surrounding the use of federal family planning funds in Arizona demonstrates the important role states have in efficient, effective, and equitable state implementation of national resources in successfully reaching local populations. The contextualization of government funding of family planning provides insight into recent attempts to defund abortion providers like Planned Parenthood, cut the Title X Family Planning Program, and restructure Medicaid in the twenty-first century.
ContributorsNunez-Eddy, Claudia (Author) / Maienschein, Jane (Thesis advisor) / Hurlbut, James (Committee member) / O'Neil, Erica (Committee member) / Arizona State University (Publisher)
Created2018
Description
Catastrophe events occur rather infrequently, but upon their occurrence, can lead to colossal losses for insurance companies. Due to their size and volatility, catastrophe losses are often treated separately from other insurance losses. In fact, many property and casualty insurance companies feature a department or team which focuses solely on modeling catastrophes. Setting reserves for catastrophe losses is difficult due to their unpredictable and often long-tailed nature. Determining loss development factors (LDFs) to estimate the ultimate loss amounts for catastrophe events is one method for setting reserves. In an attempt to aid Company XYZ set more accurate reserves, the research conducted focuses on estimating LDFs for catastrophes which have already occurred and have been settled. Furthermore, the research describes the process used to build a linear model in R to estimate LDFs for Company XYZ's closed catastrophe claims from 2001 \u2014 2016. This linear model was used to predict a catastrophe's LDFs based on the age in weeks of the catastrophe during the first year. Back testing was also performed, as was the comparison between the estimated ultimate losses and actual losses. Future research consideration was proposed.
ContributorsSwoverland, Robert Bo (Author) / Milovanovic, Jelena (Thesis director) / Zicarelli, John (Committee member) / School of Mathematical and Statistical Sciences (Contributor) / Barrett, The Honors College (Contributor)
Created2018-05
Description
Elections in the United States are highly decentralized with vast powers given to the states to control laws surrounding voter registration, primary procedures, and polling places even in elections of federal officials. There are many individual factors that predict a person's likelihood of voting including race, education, and age. Historically disenfranchised groups are still disproportionately affected by restrictive voter registration and ID laws which can suppress their turnout. Less understood is how election-day polling place accessibility affects turnout. Absentee and early voting increase accessibility for all voters, but 47 states still rely on election-day polling places. I study how the geographic allocation of polling places and the number of voters assigned to each (polling place load) in Maricopa County, Arizona has affected turnout in primary and general elections between 2006 and 2016 while controlling for the demographics of voting precincts. This represents a significant data problem; voting precincts changed three times during the time studied and polling places themselves can change every election. To aid in analysis, I created a visualization that allows for the exploration of polling place load, precinct demographics, and polling place accessibility metrics in a map view of the county. I find through a spatial regression model that increasing the load on a polling place can decrease the election-day turnout and prohibitively large distances to the polling place have a similar effect. The effect is more pronounced during general elections and is present at varying levels during each of the 12 elections studied. Finally, I discuss how early voting options appear to have little positive effect on overall turnout and may in fact decrease it.
ContributorsHansen, Brett Joseph (Author) / Maciejewski, Ross (Thesis director) / Grubesic, Anthony (Committee member) / Economics Program in CLAS (Contributor) / School of Mathematical and Statistical Sciences (Contributor) / Computer Science and Engineering Program (Contributor) / Barrett, The Honors College (Contributor)
Created2017-12
Description
The growing Hispanic population in Phoenix, Arizona frequently lacks financial resources which may limit their access to health care. The goal of this study was to identify the ideal factors in a health insurance plan for the Hispanic/Latino population in Phoenix, AZ. A survey was designed to gather information regarding demographics, health insurance, preferences, and affordability. The survey was completed by 260 participants. Several multivariate regressions were run using SAS Statistical Software. The final model generated explained 4.48% of the variation in the data set. It showed that an individual who identified as Hispanic/Latino was 8.2% less likely to have health insurance. In addition, an individual who identified as a US Citizen was 23% more likely to have health insurance. To improve access and enrollment among the Hispanic/Latino population, further investigation is needed to identify relevant communication techniques that increase enrollment among this high-risk community.
ContributorsToo, Rachel Yun-May (Author) / Whisner, Corrie (Thesis director) / Calvin, Samantha (Committee member) / Cook, Aaron (Committee member) / Economics Program in CLAS (Contributor) / School of Molecular Sciences (Contributor) / Barrett, The Honors College (Contributor)
Created2018-05
Description
Food deserts are defined as regions with low average income, low accessibility to grocery stores, and high adverse health outcomes. Food deserts have thus become an important area of public health research, and many actions are being taken across the country to "solve" the variety of problems food deserts represent. Despite the many solutions promoted to improve food security, healthy food access, and health outcomes among individuals living in food desert areas, not all activities have been critically assessed for their potential for sustained impact. Further, little research has been conducted in the state of Arizona regarding food-related ‘assets’ available to employ in solutions to food desert problems. This analysis gives a glimpse into the complex nature of food deserts, which are impacted by a variety of factors, from economics to public policy to culture. It further provides a current assessment of available assets for potential use in ameliorating the negative impacts of food deserts on Arizona citizens. A graphical asset mapping analysis offers specific consideration of farmers markets and food hubs to possibly aid food deserts in the state.
ContributorsYanamandra, Meghana (Author) / Wharton, Christopher (Christopher Mack), 1977- (Thesis advisor) / Maienschein, Jane (Thesis advisor) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2015
Description
Vaccinations are important for preventing influenza infection. Maximizing vaccination uptake rates (80-90%) is crucial in generating herd immunity and preventing infection incidence. Vaccination of healthcare professionals (HCP) against influenza is vital to infection control in healthcare settings, given their consistent exposure to high-risk patients like: those with compromised immune systems, children, and the elderly (Johnson & Talbot, 2011). Though vaccination is vital in disease prevention, influenza vaccination uptake among HCP is low overall (50% on average) (Pearson et al., 2006). Mandatory vaccination policies result in HCP influenza vaccination uptake rates substantially higher than opt-in influenza vaccination campaigns (90% vs. 60%). Therefore, influenza vaccination should be mandatory for HCP in order to best prevent influenza infection in healthcare settings. Many HCP cite individual objections to influenza vaccination rooted in personal doubts and ethical concerns, not best available scientific evidence. Nevertheless, HCP ethical responsibility to their patients and work environments to prevent and lower influenza infection incidence overrules such individual objections. Additionally, mandatory HCP influenza vaccination policies respect HCP autonomy via including medical and religious exemption clauses. While vaccination as a prevention method for influenza is logically sound, individuals’ actions are not always rooted in logic. Therefore, I analyze HCP perceptions and actions toward influenza vaccination in an effort to better explain low HCP uptake rates of the influenza vaccine and individual objections to influenza vaccination. Such analysis can aid in gaining HCP trust when implementing mandatory HCP influenza vaccination policies. In summary, mandatory HCP influenza vaccination policies are ethically justified, effective, scientifically-supported method of maximizing HCP influenza vaccine uptake and minimizing the spread of the influenza virus within healthcare settlings.
ContributorsGur-Arie, Rachel (Author) / Maienschein, Jane (Thesis advisor) / Hurlbut, Ben (Thesis advisor) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2016
Description
American Indian literature is replete with language that refers to broken or hollow promises the US government has made to American Indians, one of the most prominent being that the US government has not kept its promises regarding health services for American Indians/Alaska Natives (AI/AN). Some commenters refer to treaties between tribes and the US government as the origin of the promise for health services to AI/AN. Others point to the trust relationship between the sovereign nations of American Indian tribes and the US government, while still others assert that the Snyder Act of 1921 or the Indian Health Care Improvement Act (IHCIA) contained the promise for health care. While the US has provided some form of health care for AI/AN since the country was in its infancy, and continues to do so through the Indian Health Service, the promise of health services for AI/AN is not explicit.
Philosophers have articulated that a promise contains a moral obligation to fulfill it because of others’ expectations created by that promise. As the US government made its first promises in early treaties with AI/AN tribes and subsequently made promises in the years since, it is morally obligated to fulfill those promises, be they lying promises or not, because of resulting expectations. Yet, the US government has historically acted to restrict the rights of AI/AN—rights that include access to health services—through assimilation, separation, or termination policies. Further, the policies of the US government have kept the AI/AN populations socioeconomically impoverished, dependent on the US government for basic needs, and susceptible to health-compromising conditions.
Using case studies, this dissertation looks not only at the policies and events that directly affected health services and health status, but also at how those policies and events contributed to health outcomes and the expectations of AI/AN. Given the history of the US government in fulfilling (or not fulfilling) its promises, this dissertation examines the expectations of AI/AN for their own future health outcomes under the policy of self-governance.
Philosophers have articulated that a promise contains a moral obligation to fulfill it because of others’ expectations created by that promise. As the US government made its first promises in early treaties with AI/AN tribes and subsequently made promises in the years since, it is morally obligated to fulfill those promises, be they lying promises or not, because of resulting expectations. Yet, the US government has historically acted to restrict the rights of AI/AN—rights that include access to health services—through assimilation, separation, or termination policies. Further, the policies of the US government have kept the AI/AN populations socioeconomically impoverished, dependent on the US government for basic needs, and susceptible to health-compromising conditions.
Using case studies, this dissertation looks not only at the policies and events that directly affected health services and health status, but also at how those policies and events contributed to health outcomes and the expectations of AI/AN. Given the history of the US government in fulfilling (or not fulfilling) its promises, this dissertation examines the expectations of AI/AN for their own future health outcomes under the policy of self-governance.
ContributorsDrago, Mary (Author) / Maienschein, Jane (Thesis advisor) / Ellison, Karin (Committee member) / Herkert, Joseph (Committee member) / Hurlbut, James (Committee member) / Robert, Jason (Committee member) / Trujillo, Michael (Committee member) / Arizona State University (Publisher)
Created2016