Matching Items (19)

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Physician and Medical Ethics Committee Members' Perceptions of Death with Dignity in Arizona

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Death with Dignity is a concept that initially began as a set of philosophical and ethical principles that sought to define what it meant to die a "good" death that

Death with Dignity is a concept that initially began as a set of philosophical and ethical principles that sought to define what it meant to die a "good" death that was reasonable to the person experiencing the dying process. This dying process is terminal illness, or any condition that cannot be cured and who's ultimate prognosis is death. Today, Death with Dignity still embodies this, but it is also a set of legal and medical treatments and practices that can be used to aid terminal patients in accomplishing a "good" death. The Death with Dignity treatment options that are chiefly discussed in this study are patient withdrawal of care, patient control of pain medications, and physician-assisted suicide. Physician-assisted suicide is legal in six states in the US excluding Arizona. Considering that Oregon is the first state to pass a Death with Dignity Act and that it is the precedent for all other Acts, this study sought to understand the differences in perception of physician-assisted suicide between Arizona and Oregon in the pursuit of clarifying what barriers are still in place in Arizona to passing a Death with Dignity act. To ask the question of "Do physicians and ethics committee members in Arizona support Death with Dignity in the forms of patient control of pain medications, withdrawal of treatment, and physician-assisted suicide?", a literature review was conducted to determine important national and local perceptions of physician-assisted suicide and Death with Dignity, a 14-question, structured survey was created with the identified concerns, and it was distributed to Arizona health care workers by email and in person. This survey was approved by ASU's Institutional Review Board. This survey found that 100% of participants would vote for a Death with Dignity Act in Arizona if it were on a ballot measure. 76% of participants would aid a terminally-ill and eligible patient in physician-assisted suicide under some circumstances if it were legal in Arizona, and 24% of participants would never aid a patient in physician-assisted suicide. The concerns with physician-assisted suicide that were marked most important by Arizona healthcare workers were that hospice is a better option for the terminally ill and that physician-assisted suicide may be misused with disadvantaged persons. The most important factors of terminal illness that influence views of physician-assisted suicide marked by Arizona healthcare workers were the amount of pain the patient is expected to experience in the end of life, the amount of pain that can be relieved for the patient, the expected quality of life of the patient, and the patient's right to autonomy in healthcare. The significant differences between Oregon and Arizona in this study were the importance of expected mental decline of patient, patient's wishes that differ from family's, and hospice being a better option than suicide in influencing views of physician-assisted suicide. These differences could be deemed hurdles to Death with Dignity legislation in Arizona. This study recommended addressing those differences in public education and medical education and seeking Death with Dignity legislation via ballot measure.

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  • 2017-05

The Ethics of Forced Chemotherapy on Minors with Good Prognoses

Description

Each family approaches a cancer diagnosis differently. While some families pursue traditional treatments to the fullest extent, others attempt to refuse chemotherapy, often in favor of alternative medicines. When the

Each family approaches a cancer diagnosis differently. While some families pursue traditional treatments to the fullest extent, others attempt to refuse chemotherapy, often in favor of alternative medicines. When the patient is a minor, his or her parents have the authority to make medical decisions on their behalf, and this authority is constitutionally protected and socially upheld. However, when the decision to forgo chemotherapy does not comply with minimum standard of care and puts the minor's life in danger, legal action can and has been taken to force the minor to undergo chemotherapy. Legal precedent and biomedical ethics principles guide the decision-making process of the physicians and judges involved, although there is no official framework by which to prioritize these principles. Neglect and abuse procedures, as well as capacity determinations, mature minor doctrines, and religious convictions, add complexity to each forced chemotherapy case. These complexities were explored through the context of four case studies: Cassandra Callendar, who was not granted mature minor status and was forced into treatment by the Connecticut Supreme court; Starchild Abraham Cherrix, who was allowed to pursue the alternative Hoxsey therapy with the consent of his parents and the local court; Dennis Lindberg, a 14-year-old Jehovah's Witness who was permitted to refuse blood transfusions under the Mature Minor Doctrine; and Daniel Hauser, a developmentally delayed teen who was forced to undergo therapy against his parents' religious convictions. In the analysis and comprehensive comparison of these cases, it was concluded that an attempt to establish a protocol by which to determine the ethics of forcing chemotherapy, while well-intended, would ultimately be ineffective and extremely complex. Thus, each forced chemotherapy case must be evaluated on an individual basis.

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  • 2018-05

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The Bioethics of Cell Free Fetal DNA Testing

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

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.

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  • 2014-05

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The Ethics of Brain-Computer Interfaces

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The development of computational systems known as brain-computer interfaces (BCIs) offers the possibility of allowing individuals disabled by neurological disorders such as Amyotrophic Lateral Sclerosis (ALS) and ischemic stroke the

The development of computational systems known as brain-computer interfaces (BCIs) offers the possibility of allowing individuals disabled by neurological disorders such as Amyotrophic Lateral Sclerosis (ALS) and ischemic stroke the ability to perform relatively complex tasks such as communicating with others and walking. BCIs are closed-loop systems that record physiological signals from the brain and translate those signals into commands that control an external device such as a wheelchair or a robotic exoskeleton. Despite the potential for BCIs to vastly improve the lives of almost one billion people, one question arises: Just because we can use brain-computer interfaces, should we? The human brain is an embodiment of the mind, which is largely seen to determine a person's identity, so a number of ethical and philosophical concerns emerge over current and future uses of BCIs. These concerns include privacy, informed consent, autonomy, identity, enhancement, and justice. In this thesis, I focus on three of these issues: privacy, informed consent, and autonomy. The ultimate purpose of brain-computer interfaces is to provide patients with a greater degree of autonomy; thus, many of the ethical issues associated with BCIs are intertwined with autonomy. Currently, brain-computer interfaces exist mainly in the domain of medicine and medical research, but recently companies have started commercializing BCIs and providing them at affordable prices. These consumer-grade BCIs are primarily for non-medical purposes, and so they are beyond the scope of medicine. As BCIs become more widespread in the near future, it is crucial for interdisciplinary teams of ethicists, philosophers, engineers, and physicians to collaborate to address these ethical concerns now before BCIs become more commonplace.

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Date Created
  • 2016-05

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Individualizing the informed consent process for whole genome sequencing: a patient directed approach

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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

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.

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  • 2013

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Patient narratives of myalgic encephalomyelitis: situated knowledge for re/constructing healthcare

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Medical policies, practices, and definitions do not exist solely in the clinical realm; they show up in the lived experiences of patients. This research examines how people with the chronic

Medical policies, practices, and definitions do not exist solely in the clinical realm; they show up in the lived experiences of patients. This research examines how people with the chronic illness called myalgic encephalomyelitis (ME) define their own illness experiences. They have situated knowledge about their illness onset, search for care, and clinical encounters. Their knowledge complicates and challenges the existing norms in clinical practice and medical discourse, as the experience of searching for care with ME reveals weaknesses in a system that is focused on acute care. Patient narratives reveal institutional patterns that obstruct access to medical care, such as disbelief from clinicians and lack of training in chronic illness protocols. They also reveal patterns in physician behavior that indicate the likelihood of receiving effective care. These patient narratives serve as a basis for continued examination of ME as well as further reconstruction of medical practice and procedure.

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  • 2019

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Last Rights in Six Key Narratives: Autonomy, Religion, and the Right to Die Movement in America

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ABSTRACT

The purpose of this thesis is to identify the key determinants of changes in the public’s perception and the historical and legal context for the current laws that govern the

ABSTRACT

The purpose of this thesis is to identify the key determinants of changes in the public’s perception and the historical and legal context for the current laws that govern the Right to Die in America. At its essence, the Right to Die Movement can be summarized in six selected narratives that were performed, told, debated, or reported for the public throughout history. Each of these six stories was presented with the most effective communication technologies available to the narrators in their respective eras.

The thesis includes an original research study assessing the impact of a social media phenomenon on the Right to Die Movement. While the Brittany Maynard Farewell video may not have been solely responsible for the surge of public support for MAID, it certainly captured the sense of autonomy and individual rights Americans believe they have in 2014 and continuing at least through 2019. This belief in autonomy and individual rights influenced the American sense of who owns their bodies and who can control their deaths after they are given terminal diagnoses. The first key narrative introduced Natural Law and the Natural Rights that proceed from this universal law. The second opened up communication about death. The next three demonstrated to Americans what legal rights they had and which were withheld by tradition and law. The last narrative captured and embodied the American sense of autonomy and individual rights that a majority of Americans now feel they possess. The laws and policies that have resulted from the Right to Die Movement both define the boundaries of autonomy and construct an evolving understanding of human freedom.

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Date Created
  • 2020

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Bad drug gone good: an explanatory model for drug normalization

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

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.

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Date Created
  • 2015

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Making better students: ADHD in higher education and the biopolitics of stimulant medication

Description

According to my 2016 survey of ASU undergraduate students, 33% have used stimulant medications (e.g. Adderall or Ritalin) without a prescription to study. I view this practice as a ste

According to my 2016 survey of ASU undergraduate students, 33% have used stimulant medications (e.g. Adderall or Ritalin) without a prescription to study. I view this practice as a step towards cognitive enhancement, which is the deliberate application of biotechnology to radically alter the human condition. From a foresight perspective, the ability to actively improve human beings, to take our evolutionary destiny into our own hands, may be a turning point on par with agriculture or the use of fossil fuels. The existential risks, however, may be greater than the benefits—and many of the most radical technologies have made little documented progress.

I turn to an actual example where people are trying to make themselves marginally better at academic tasks, as a guide to how future transformative development in human enhancement may be incorporated into everyday practice. This project examines the history and context that led to the widespread use of stimulant medication on college campuses. I describe how Attention Deficit Hyperactivity Disorder (ADHD), for which stimulant medication is prescribed and diverted, governs students, negotiates relationships between parents and school authorities, and manages anxieties resulting from a competitive neoliberal educational system. I extend this archeology of ADHD through the actions and ethical beliefs of college students, and the bioethical arguments for and against human enhancement. Through this work, I open a new space for an expanded role for universities as institutions capable of creating experimental communities supporting ethical cognitive enhancement.

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Date Created
  • 2016

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Between persuasion and coercion: situating mandatory influenza vaccination policy of healthcare personnel (HCP)

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

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.

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Date Created
  • 2016