Matching Items (7)
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- All Subjects: Medical Ethics
- Creators: Hurlbut, Ben
- Creators: Hurlbut, J. Benjamin
- 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
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.
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.
ContributorsBurnam-Fink, Michael (Author) / Miller, Clark (Thesis advisor) / Hurlbut, Ben (Thesis advisor) / Wetmore, Jameson (Committee member) / Arizona State University (Publisher)
Created2016
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
In 1996, President Clinton ordered the formation of the Advisory Committee on Human Radiation Experiments (ACHRE), which undertook to evaluate the morality of a myriad of secret and publicized radiation experiments ranging from 1944 to 1974. The goal of this thesis is to analyze the ways in which that committee formed moral evaluations and the extent to which its strategies related to a broader historical and philosophical discourse. Here I attempt to describe two specific techniques of simplification the committee deploys in order to make a retrospective moral analysis possible. Although the techniques comprise specific problems, frameworks, subjective perspectives, and conceptual links, their unifying principle is the field of choices the techniques produce. In the first technique I outline, I argue that by focusing on the problem of historical relativism, the committee gains a platform through which it would be granted flexibility in making a distinction between moral wrongdoing and blameworthiness. In the second technique of simplification I outline, I argue that the committee's incorporation of a principle to reduce uncertainty as an ethical aim allow it to establish new ways to reconcile scientific aims with moral responsibility. In addition to describing the structure of these techniques, I also demonstrate how they relate to the specific experiments the analysts aim to evaluate, using both the ACHRE experiments as well as the Nuremberg Trial experiments as my examples. My hope is not to show why a given committee made a particular moral evaluation, or to say whether a decision was right or wrong, but rather to illustrate how certain techniques open up a field of choices that allow moral analysts to form retrospective moral judgments.
ContributorsCirjan, Cristian (Author) / Hurlbut, Ben (Thesis director) / Humphrey, Ted (Committee member) / Zachary, Gregg (Committee member) / Barrett, The Honors College (Contributor)
Created2015-05
Description
Informed Consent is a ubiquitous way of enshrining choice in the United States which regulates social relations in domains as varied as health, research, access to institutions, and prisons. Informed consent describes an imagined epistemic relationship between right knowledge and legitimate choice, where judgements of capacitation determine whether a person is the right sort of person to take up knowledge which will render them agential under conditions of asymmetrical power. It has been developed over and over to solve problems of injustice, where the injustice in question is understood in terms of undue infringement on individual autonomy, and the logic of informed consent is re-invented to reframe the problem at hand as a rightful matter of individual choice. It is imagined to respect autonomy, and to perform a transformative "moral magic" that makes the forbidden quotidian. This dissertation develops this account of informed consent through a series of cases, each of which explicates different aspects of the technopolitics of informed consent. It begins with genetic counseling as a paradigm case in the logic of informed consent: a well-developed field that emerged to inform people about genetics and genomics in the interest not only of individual reproductive choice, but in opposition to eugenic shaping of populations through genetic knowledge. Next, pro- and anti- abortion deployments of informed consent illustrate an epistemology of information itself, which is understood to agentialize as well as to serve as a site for refusing choice to those deemed incapacitated. Third, liability waivers and requests for student informed consent on university campuses during the pandemic show informed consent to be a tool for the exercise of biopolitics and, in particular, for making responsible subjects. Finally, civil libertarian opposition to migrant genetic testing on the grounds that migrants weren’t asked for consent demonstrates a tight coupling between consent, imaginations of just state-subject relations, and what it means to be recognized as a person. Ultimately, this dissertation argues for a practice of attention that sees informed consent as an important site for the exercise of power and offers frameworks for analyzing it as such.
ContributorsDietz, Elizabeth A (Author) / Hurlbut, Ben (Thesis advisor) / Reynolds, Joel M (Committee member) / Brian, Jennifer (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2023
Description
In the last 200 years, advancements in science and technology have made understanding female sexual function and the female body more feasible; however, many women throughout the US still lack fundamental understanding of the reproductive system in the twenty-first century. Many factors contribute to the lack of knowledge and misconceptions that women still have. Discussing sexual health tends to make some people uncomfortable and this study aims to investigate what aspects of somewhat recent US history in women’s health care may have led to that discomfort. This thesis examines the question: what are some of the factors that shaped women’s reproductive medicine in the US from the mid 1800s and throughout the 1900s and what influence could the past have had on how women and their physicians understand female sexuality in medicine and how physicians diagnose their female patients in the twenty-first century. A literature review of primary source medical texts written at the end of the 1800s provides insight about patterns among physicians at the time and their medical practice with female patients. Factors like gendered expectations in medical practice, misconceptions about the female body and behaviors, and issues of morality in sex medicine all contributed to women lacking understanding of sex female reproductive functions. Other factors like a physician’s role throughout history and non-medical reproductive health providers and solutions likely also influenced the reproductive medicine women received. Examining the patterns of the past provides some insight into some of the outdated and gendered practices still exhibited in healthcare. Expanding sexual education programs, encouraging discussion about sex and reproductive health, and checking gendered implicit bias in reproductive healthcare could help eliminate echoes of hysteria ideology in the twenty-first century medicine.
ContributorsHorwitz, Rainey (Author) / Maienschein, Jane (Thesis advisor) / Hurlbut, Ben (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2019