Matching Items (17)
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- All Subjects: ethics
- 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
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
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
Joseph Rotblat (1908-2005) was the only physicist to leave the Manhattan Project for moral reasons before its completion. He would spend the rest of his life advocating for nuclear disarmament. His activities for disarmament resulted in the formation, in 1957, of the Pugwash conferences, which emerged as the leading global forum to advance limits on nuclear weapons during the Cold War. Rotblat's efforts, and the activities of Pugwash, resulted in both being awarded the Nobel Peace Prize in 1995. Rotblat is a central figure in the global history of resistance to the spread of nuclear weapons. He also was an important figure in the emergence, after World War II, of a counter-movement to introduce new social justifications for scientific research and new models for ethics and professionalism among scientists. Rotblat embodies the power of the individual scientist to say "no" and thus, at least individually, put limits of conscience on his or her scientific activity. This paper explores the political and ethical choices scientists make as part of their effort to behave responsibly and to influence the outcomes of their work. By analyzing three phases of Rotblat's life, I demonstrate how he pursued his ideal of beneficial science, or science that appears to benefit humanity. The three phases are: (1) his decision to leave the Manhattan Project in 1944, (2) his role in the creation of Pugwash in 1957 and his role in the rise of the organization into international prominence and (3) his winning the Nobel Peace Prize in 1995. These three phases of Rotblat's life provide a singular window of the history of nuclear weapons and the international movement for scientific responsibility in the 50 years since the bombing of Hiroshima in 1945. While this paper does not provide a complete picture of Rotblat's life and times, I argue that his experiences shed important light on the difficult question of the individual responsibility of scientists.
ContributorsEvans, Alison Dawn (Author) / Zachary, Gregg (Thesis director) / Hurlbut, Ben (Committee member) / Francis, Sybil (Committee member) / Barrett, The Honors College (Contributor) / Department of Chemistry and Biochemistry (Contributor) / School of Historical, Philosophical and Religious Studies (Contributor)
Created2015-05
Description
This thesis aims to address the ethics of keeping the big cats, such as lions, tigers, and leopards, in zoos. It is a practice that has generated some controversy in light of scientific studies reporting stress among wide-ranging animals in captive enclosures, as well as in the context of wider discussions in animal welfare and conservation ethics in zoos. A driving question for this project, therefore, was "What are the arguments for and against keeping large felids in zoos/captivity?" This thesis examines the historical and current ethical approaches to evaluating the ethics of maintaining big cats in zoos. Due to many of the big cat species listed as endangered species on the IUCN redlist, the species-centered approach to zoo ethics is becoming the common viewpoint, and, as a result, zoos are deemed ethical because of their contribution to ex situ conservation practices. Further, the ethical arguments against zoos are minimized when the zoos provide suitable and appropriate enclosures for their large felids. Of course, not all zoos are created equal; the ethics of zoos need to be evaluated on a case-by-case basis, but in general, it is ethical to maintain big cats in zoos.
ContributorsZeien, Krista Marie (Author) / Minteer, Ben (Thesis director) / Smith, Andrew (Committee member) / Ellison, Karin (Committee member) / Barrett, The Honors College (Contributor) / Department of Chemistry and Biochemistry (Contributor) / School of Life Sciences (Contributor)
Created2014-05
Description
The prospect of anti-aging or life extension technology is controversial in biogerentology but deemed even by skeptical experts to warrant discussion. I discuss the justifications that the probability of life extension technology being developed in the near future is reasonably high and that this research justifies the time and money it receives. I investigate potential ethical and societal issues anti-aging technology might create. This paper addresses inequality of access, economic cost, changes in quality of life, the role of death in human life, if and how the technology should be regulated and how parties who choose not to undergo treatment can be fairly treated, even when they are a minority.
ContributorsGlesener, Julia Hannah (Author) / McGregor, Joan (Thesis director) / DeSerpa, Allan (Committee member) / Barrett, The Honors College (Contributor) / School of Mathematical and Statistical Sciences (Contributor) / Department of Chemistry and Biochemistry (Contributor) / School of Historical, Philosophical and Religious Studies (Contributor)
Created2015-05
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
This thesis explores concept of "global bioethics" in both its development as well as its current state in an effort to understand exactly where it fits into the larger field of bioethics. Further, the analysis poses specific questions regarding what it may contribute to this field and related fields, and the possibility and scope associated with the continued development of global bioethics as its own discipline. To achieve this, the piece addresses questions regarding current opinions on the subject, the authorities and their associated publications related to global bioethics, and what the aims of the subject should be given its current state. "Global Bioethics" is a term that, while seen frequently in bioethics literature, is difficult to define succinctly. While many opinions are provided on the concept, little consensus exists regarding its application and possible contributions and, in some cases, even its very possibility. Applying ethical principles of health and medicine globally is undoubtedly complicated by the cultural, social, and geographical considerations associated with understanding health and medicine in different populations, leading to a dichotomy between two schools of thought in relation to global bioethics. These two sides consist of those who think that universality of bioethics is possible whereas the opposing viewpoint holds that relativism is the key to applying ethics on a global scale. Despite the aforementioned dichotomy in addressing applications of global bioethics, this analysis shows that the goals of the subject should be more focused on contributing to ethical frameworks and valuable types of thinking related to the ethics health and medicine on a global scale. This is achieved through an exploration of bioethics in general, health as a function of society and culture, the history and development of global bioethics itself, and an exploration of pertinent global health topics. While primarily descriptive in nature, this analysis critiques some of the current discussions and purported goals surrounding global bioethics, recommending that the field focus on fostering valuable discussion and framing of issues rather than the pursuit of concrete judgments on moral issues in global health and medicine.
ContributorsRuffenach, Stephen Charles (Author) / Robert, Jason S (Thesis advisor) / Maienschein, Jane (Committee member) / Hruschka, Daniel J (Committee member) / Arizona State University (Publisher)
Created2011