Matching Items (16)
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- All Subjects: Embryology
- Creators: Maienschein, Jane
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
In 1997, developmental biologist Michael Richardson compared his research team's embryo photographs to Ernst Haeckel's 1874 embryo drawings and called Haeckel's work noncredible.Science soon published <“>Haeckel's Embryos: Fraud Rediscovered,<”> and Richardson's comments further reinvigorated criticism of Haeckel by others with articles in The American Biology Teacher, <“>Haeckel's Embryos and Evolution: Setting the Record Straight <”> and the New York Times, <“>Biology Text Illustrations more Fiction than Fact.<”> Meanwhile, others emphatically stated that the goal of comparative embryology was not to resurrect Haeckel's work. At the center of the controversy was Haeckel's no-longer-accepted idea of recapitulation. Haeckel believed that the development of an embryo revealed the adult stages of the organism's ancestors. Haeckel represented this idea with drawings of vertebrate embryos at similar developmental stages. This is Haeckel's embryo grid, the most common of all illustrations in biology textbooks. Yet, Haeckel's embryo grids are much more complex than any textbook explanation. I examined 240 high school biology textbooks, from 1907 to 2010, for embryo grids. I coded and categorized the grids according to accompanying discussion of (a) embryonic similarities (b) recapitulation, (c) common ancestors, and (d) evolution. The textbooks show changing narratives. Embryo grids gained prominence in the 1940s, and the trend continued until criticisms of Haeckel reemerged in the late 1990s, resulting in (a) grids with fewer organisms and developmental stages or (b) no grid at all. Discussion about embryos and evolution dropped significantly.
ContributorsWellner, Karen L (Author) / Maienschein, Jane (Thesis advisor) / Ellison, Karin D. (Committee member) / Creath, Richard (Committee member) / Robert, Jason S. (Committee member) / Laubichler, Manfred D. (Committee member) / Arizona State University (Publisher)
Created2014
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
Visualizing the Embryo: Establishing Procedures for Digital image Production with the Embryo Project
Description
The Embryo Project (EP) Encyclopedia is an online database that has consolidated hundreds of development-related research articles, with subcategories addressing the context of such research. These articles are written by undergraduate students, graduate students, and professionals in the fields of biology, history, and other fields, and are intended for a diverse audience of readers from both biology and non-biology related backgrounds. As the EP addresses a public audience, it is imperative to utilize all possible means to share the information that each article covers. Until 2013, the EP Encyclopedia did not present images in articles as no formal protocol for image development existed. I have created an image style guide that outlines the basic steps of creating and submitting an image that can complement an EP article and can enhance a reader's understanding of the discussed concept. In creating this style guide, I investigated similar protocols used by other scientific journals and medical professionals. I also used different programs and based my style guide off of the procedures I used in Adobe Illustrator CS6.
ContributorsHamidi, Neekta (Author) / Maienschein, Jane (Thesis director) / Crowe, Nathan (Committee member) / O'Neil, Erica (Committee member) / Barrett, The Honors College (Contributor) / Harrington Bioengineering Program (Contributor)
Created2013-05
Description
This project focuses on the history of how teratogens, or agents which have the potential to cause birth defects, have been understood and tested for teratogenic potential in the US over the twentieth century. Prior to this time, teratogen studies were primarily concerned with cataloguing defects rather than exploring possible causes. At the turn of the twentieth century, experimental teratogen studies with the aim of elucidating mechanisms commenced. However, these early studies did not aim to discover human pregnancy outcomes and ways to prevent them, but simply focused on the results of exposing pregnant mammals to various physical and chemical insults. My project documents the change in understanding of teratogens over the twentieth century, the advancement of testing methods, and the causes of these advancements. Through the Embryo Project at Arizona State University (embryo.asu.edu), a digital encyclopedia for topics related to embryology, development, and reproductive medicine, I wrote ten encyclopedic articles that focused on chemical mechanisms of various teratogens, testing limitations in animal models, and legal and regulatory responses to well-known teratogens. As an extension of my previous work, this project bridges the current gap in research and focuses on contextualizing major events in the field of teratology to determine how these events led to various shifts in the understanding of birth defects and their causes, and how those conceptual shifts led to the creation of teratological testing guidelines. Results show that throughout the twentieth century, there are four distinct shifts in the understanding of teratogens: the first being 1900-1945, the second being 1946-1960, the third being 1961-1980, and the fourth being 1981-2000.
ContributorsTantibanchachai, Chanapa (Author) / Maienschein, Jane (Thesis director) / Laubichler, Manfred (Committee member) / O'Neil, Erica (Committee member) / Barrett, The Honors College (Contributor) / School of Life Sciences (Contributor)
Created2014-05
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
Description
Biology textbooks are everybody's business. In accepting the view that texts are created with specific social goals in mind, I examined 127 twentieth-century high school biology textbooks for representations of animal development. Paragraphs and visual representations were coded and placed in one of four scientific literacy categories: descriptive, investigative, nature of science, and human embryos, technology, and society (HETS). I then interpreted how embryos and fetuses have been socially constructed for students. I also examined the use of Haeckel's embryo drawings to support recapitulation and evolutionary theory. Textbooks revealed that publication of Haeckel's drawings was influenced by evolutionists and anti-evolutionists in the 1930s, 1960s, and the 1990s. Haeckel's embryos continue to persist in textbooks because they "safely" illustrate similarities between embryos and are rarely discussed in enough detail to understand comparative embryology's role in the support of evolution. Certain events coincided with changes in how embryos were presented: (a) the growth of the American Medical Association (AMA) and an increase in birth rates (1950s); (b) the Biological Sciences Curriculum Study (BSCS) and public acceptance of birth control methods (1960s); (c) Roe vs. Wade (1973); (d) in vitro fertilization and Lennart Nilsson's photographs (1970s); (e) prenatal technology and fetocentrism (1980s); and (f) genetic engineering and Science-Technology-Society (STS) curriculum (1980s and 1990s). By the end of the twentieth century, changing conceptions, research practices, and technologies all combined to transform the nature of biological development. Human embryos went from a highly descriptive, static, and private object to that of sometimes contentious public figure. I contend that an ignored source for helping move embryos into the public realm is schoolbooks. Throughout the 1900s, authors and publishers accomplished this by placing biology textbook embryos and fetuses in several different contexts--biological, technological, experimental, moral, social, and legal.
ContributorsWellner, Karen L (Author) / Maienschein, Jane (Thesis advisor) / Ellison, Karin D. (Committee member) / Robert, Jason S. (Committee member) / Arizona State University (Publisher)
Created2010
Description
Edmund Beecher Wilson contributed to cell biology, the study of cells, in the US during the end of the nineteenth and the beginning of the twentieth centuries. His three editions of The Cell in Development and Inheritance (or Heredity) in 1896, 1900, and 1925 introduced generations of students to cell biology. In The Cell, Wilson described the evidence and theories of his time about cells and identified topics for future study. He helped show how each part of the cell works during cell division and in every step of early development of an organism. Developmental biologists trained in the mid-twentieth century reported WilsonÕs text as their foundation for understanding biology, including about how cells, development, heredity, and evolution interact. Wilson considered cells as the center of all biological phenomena.
ContributorsMaienschein, Jane (Author) / Baranski, Marci (Editor) / Arizona State University. School of Life Sciences. Center for Biology and Society. Embryo Project Encyclopedia. (Publisher) / Arizona Board of Regents (Publisher)
Created2013-08-05