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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

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
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Description
Physician-assisted suicide occurs when a physician facilitates a patient's death by prescribing a lethal medication that they understand will be used for the purpose of ending the patient's life. It is a highly contentious subject and, with the recent addition of California to the list of states that allow physician-assisted

Physician-assisted suicide occurs when a physician facilitates a patient's death by prescribing a lethal medication that they understand will be used for the purpose of ending the patient's life. It is a highly contentious subject and, with the recent addition of California to the list of states that allow physician-assisted suicide, is an increasingly relevant subject. Physician-assisted suicide is rarely framed as a healthcare experience, despite being a choice in the process of end-of-life care. The research seeks to bring together the debates about physician-assisted suicide with conversations about health care experiences. The experiences and perspectives of young people are particularly valuable to evaluate now, as their voices will soon be the leaders in the debate over physician-assisted suicide. Within this research, there is an underlying theme of independence of individuals that is present through both the literature review and the body of data collected and analyzed. The study found that there was no significant relationship between the quality of a person's healthcare and their perspectives about physician-assisted suicide.
ContributorsMoeur, Katherine Elizabeth (Author) / Brian, Jennifer (Thesis director) / Graff, Sarah (Committee member) / Stevenson, Christine (Committee member) / School of Life Sciences (Contributor) / School of Human Evolution and Social Change (Contributor) / Barrett, The Honors College (Contributor)
Created2016-05
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With advances in biotechnology, personalized medicine has become an ever-expanding field. Even with so much growth, the critics equally match the proponents of personalized medicine. The source of their disagreement is rooted in the concept of empowerment. This analysis utilizes the personal genomics company 23andMe and their relationship with the

With advances in biotechnology, personalized medicine has become an ever-expanding field. Even with so much growth, the critics equally match the proponents of personalized medicine. The source of their disagreement is rooted in the concept of empowerment. This analysis utilizes the personal genomics company 23andMe and their relationship with the Federal Food and Drug Administration to illustrate varying views of empowerment. Specifically, the case study focuses on the ability to provide direct-to-consumer health reports to patients independent of physicians. In doing this, larger issues of what is at stake in personalized medicine are uncovered. These include but are not limited to: who determines what individuals get empowered and what information is determined good versus bad.
ContributorsSilverman, Adam Mattern (Author) / Brian, Jennifer (Thesis director) / Hurlbut, Ben (Committee member) / Barrett, The Honors College (Contributor) / School of Life Sciences (Contributor) / Department of Psychology (Contributor)
Created2015-05
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This paper sought to answer the question of how to improve the American healthcare system. The Affordable Care Act aimed to do this by increasing access to insurance. What this has done, however, is exacerbate the already rising rate of physician shortages. As a way to fix this problem, it

This paper sought to answer the question of how to improve the American healthcare system. The Affordable Care Act aimed to do this by increasing access to insurance. What this has done, however, is exacerbate the already rising rate of physician shortages. As a way to fix this problem, it is suggested that state legislatures and the federal government adopt the rising trend of expanding scope of practice to the extent of the care providers' certification. This is a movement has garnered support throughout the country and 20 states already allow for nearly autonomous practice by advanced practice nurses (APNs). This paper looked at systematic review, peer-reviewed papers, state/federal legislation and labor statistics to demonstrate how this move could increase access to healthcare providers as well as decrease cost by nearly 25%. This paper also evaluated how to formalization of nursing education has had positive impacts on the French healthcare system. Additionally, it evaluated a more specific look at Arizona and used data provided by the Arizona Board of Nursing and The Arizona Medical Board to make a compelling argument as to why this is a viable option for solving the disparity between rural and urban healthcare. The conclusion of the paper was to push policy makers to make the statutory constraints of the profession closer to the certification the people receive in their education as opposed to relying on case law. Additionally, it would be helpful to use technological innovations, like project echo, to help these professionals practice in rural areas. This will ultimately lead to a healthcare system that better serves the needs of all populations, as well as decreasing the overall cost of care.
ContributorsKingsbury, Andrew (Author) / Brian, Jennifer (Thesis director) / McGregor, Joan (Committee member) / Reddy, Swapna (Committee member) / School of Nutrition and Health Promotion (Contributor) / Barrett, The Honors College (Contributor)
Created2018-05
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My thesis project, "An Ethical Evaluation of the Practice of Psychiatric Patient Boarding in the Emergency Department" sets out to address a relatively nameless problem in the healthcare system in the United States. This problem is the boarding of psychiatric patients in emergency departments nationwide. What is psychiatric patient boarding?

My thesis project, "An Ethical Evaluation of the Practice of Psychiatric Patient Boarding in the Emergency Department" sets out to address a relatively nameless problem in the healthcare system in the United States. This problem is the boarding of psychiatric patients in emergency departments nationwide. What is psychiatric patient boarding? This term refers to the increasingly common practice of care provided to psychiatric patients upon arrival at an emergency department. When inpatient psychiatric beds or services are not available, "boarding" is performed by simply storing mentally ill patients in hallways or other emergency room areas while they wait for the availability of psychiatric treatment, which may take hours, or in more extreme cases has been cited to last for days at a time (Alakeson et. al, 2010). While any individual can expect to wait a prolonged period of time for medical care in the increasingly overcrowded emergency departments, the psychiatric patient experience is astonishingly unique. A psychiatric patient presenting, or arriving, at the ED in crisis can often times find him or herself not only waiting hours to be admitted and assessed as a medical patient would, but with a limited and ever attenuating supply of psychiatric treatment rooms and services, these patients will often times be harbored in an ED room designed for short-term medical treatment without care until psychiatric services become available. Patients can be left waiting for days for an in-patient vacancy; all the while not receiving true psychiatric treatment and in some cases being held against their will in a chaotic environment far from conducive for treatment of a mental health ailment. In this analysis, I will discuss and review aspects of psychiatric patient boarding from various literature, such as why boarding occurs from a hospital and historical standpoint, negative implications of boarding for psychiatric and medical patients, and the burden placed on the hospital when practicing psychiatric boarding. To learn further on the topic, I will share the results from 14 semi-structured, qualitative interviews performed with ED healthcare professionals, being physicians, charge nurses, nursing staff, and certified nursing assistants or patient safety advocates. This portion of my investigation is designed to offer a perspective that the literature cannot, being a first hand outlook on psychiatric boarding from those working on the front line, focusing on topics of all aspects, such as causation, consequences for all involved parties, and proposed solutions.
ContributorsChun, Tristan Eric (Author) / Brian, Jennifer (Thesis director) / Foy, Joseph (Committee member) / School of Life Sciences (Contributor) / Barrett, The Honors College (Contributor)
Created2017-05
Description

Health service quality is understood to be a crucial determinant in successful patient-physician encounters and patient health. One common feeling that patients have reported experiencing during appointments is shame. We hypothesized that patients who experience appearance-based shame during an appointment are not likely to return to the same physician and

Health service quality is understood to be a crucial determinant in successful patient-physician encounters and patient health. One common feeling that patients have reported experiencing during appointments is shame. We hypothesized that patients who experience appearance-based shame during an appointment are not likely to return to the same physician and that patients who do not experience appearance-based shame are likely to return to the same physician. This was assessed by conducting an anonymous online survey of 13 questions that served to establish a general foundation for understanding the participants' physical characteristics such as race, age, weight, and gender identity as well as their overall patient-physician relationship and experiences of shame, if applicable. 119 participants were recruited from Arizona State University and a case study was performed individually for five participants of interest. The data analyzed from this study suggests that while appearance-based shame does exist in healthcare spaces, it is not a significant determining factor in patients returning to their physicians. In addition, there was no significant evidence to suggest that patients who do not experience appearance-based shame are either likely or more likely to return to their physician. We hypothesize this could be due to confounding variables such as convenience, accessibility, or insurance limitations which patients may prioritize over feeling ashamed during an appointment. However, more research needs to be conducted to confirm these hypotheses.

ContributorsHolmes, Madison (Author) / Santos, Emily (Co-author) / Kathir, Nehhaa (Co-author) / Fontinha de Alcantara, Christiane (Thesis director) / Roberson, Robert (Committee member) / Brian, Jennifer (Committee member) / Barrett, The Honors College (Contributor) / School of Life Sciences (Contributor)
Created2023-05
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2023 has been a record-breaking year for legislation aimed at restricting and even criminalizing access to gender affirming care for minors. In response to these legislative efforts, many advocates rely on invocations of medical authority to defend the right of individuals to access gender affirming care. However, this reliance on

2023 has been a record-breaking year for legislation aimed at restricting and even criminalizing access to gender affirming care for minors. In response to these legislative efforts, many advocates rely on invocations of medical authority to defend the right of individuals to access gender affirming care. However, this reliance on the pathologization of transgender identity both reaffirms stigmatization of transgender identity as mental illness as well as forecloses on opportunities to affirm access to gender affirming care otherwise. The purpose of this research is to use disability justice scholarship, predominantly crip theory, to analyze these legislative efforts in-depth beyond the predominant critique offered by the medical-model. I demonstrate that these legislative moves to ban access to gender affirming care are part of a larger effort to prevent a trans future more broadly. Trans childhood has become a particularly fruitful site for this political action due to the ways in which normativities relating to time, biological plasticity, and capacity shape the way that their bodies are understood. I term those individual bodies which have such characteristics of non-normative temporalities, plasticity, and capacity/incapacity grafted onto them become “bodies of normative intervention” and explore how they become the laboratory sites for producing population-wide normative interventions. This legislative effort to restrict access to gender affirming care for minors represents a broader effort to legislate a trans future out of existence through the strategic targeting of trans children. This robs society of valuable trans knowledge and experience.
ContributorsMills, Raegan Lenore (Author) / Hurlbut, Ben (Thesis advisor) / Brian, Jennifer (Thesis advisor) / Hlava, Terri (Committee member) / Arizona State University (Publisher)
Created2023
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Writing speculative fiction is a valuable method for exploring the potential societal transformations elicited by advances in science and technology. The aim of this project is to use speculative fiction to explore the potential consequences of precision medicine for individuals’ daily lives. Precision medicine is a vision of the future

Writing speculative fiction is a valuable method for exploring the potential societal transformations elicited by advances in science and technology. The aim of this project is to use speculative fiction to explore the potential consequences of precision medicine for individuals’ daily lives. Precision medicine is a vision of the future in which medicine is about predicting, and ultimately preventing disease before symptoms arise. The idea is that identification of all the factors that influence health and contribute to disease development will translate to better and less expensive healthcare and empower individuals to take responsibility for maintaining their own health and wellness. That future, as envisioned by the leaders of the Human Genome Project, the Institute for Systems Biology, and the Obama administration’s Precision Medicine Initiative, is assumed to be a shared future, one that everyone desires and that is self-evidently “better” than the present. The aim of writing speculative fiction about a “precision medicine” future is to challenge that assumption, to make clear the values underpinning that vision of precision medicine, and to leave open the question of what other possible futures could be imagined instead.
ContributorsVenkatraman, Richa (Author) / Brian, Jennifer (Thesis advisor) / Maienschein, Jane (Thesis advisor) / Hurlbut, James (Committee member) / Arizona State University (Publisher)
Created2022
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Birth control promised to curb growing human populations while liberating women individually and socially. Instead, these technologies reinforce a feedback loop associating only women’s bodies with family-planning responsibilities. As a result, many diverse female contraceptives have reached markets while few male contraceptives have. Cis-men’s attitudes are commonly offered as explanation

Birth control promised to curb growing human populations while liberating women individually and socially. Instead, these technologies reinforce a feedback loop associating only women’s bodies with family-planning responsibilities. As a result, many diverse female contraceptives have reached markets while few male contraceptives have. Cis-men’s attitudes are commonly offered as explanation for why novel male contraceptives have not reached markets at the same pace, but little research has investigated this. I address this gap through thematic analysis of focus group interviews exploring cis-men’s attitudes on existing and novel male contraceptives. Focus group findings suggest cis-men experience less urgency to contracept due to differences in physiological burdens of pregnancy and childbirth. Decreased urgency does not mean that cis-men are uninterested in contracepting or in novel contraception options, but that cis-men express boundaries to what they will endure when contracepting. Knowing men’s articulated boundaries can help male contraceptive research and development (R&D) efforts moving forward. Additionally, these findings call into question current clinical risk assessment systems wherein risk of the medication is compared to how the individual experiences (unintended) pregnancy in a purely physical sense. Lastly, these data crucially demonstrate cis-men’s interest in contracepting and having a complete clinical risk assessment system for developing, novel male contraceptives is still not enough. Systemic changes must occur for male contraceptive technologies to be accessible and utilized by cis-male populations. Because interviews were conducted before the Supreme Court’s landmark 2022 decision that overturned federal abortion protections, I expanded my research to include a follow-up survey gauging how participants’ attitudes from the focus groups were impacted, if at all. The follow-up survey demonstrated increased urgency for novel male contraceptives as a result of the Dobbs decision, for example, can increase cis-men’s urgency/interest in trying the interventions regardless of their lack of familiarity with the method or its potential side effects. Follow-up survey findings also demonstrate how cis-men’s urgency/interest for novel male contraceptives is highly influenced by the current socio-political context surrounding reproductive justice issues. This finding affirms that the focus group data finding that the current FDA (Food and Drug Administration) clinical risk assessment is incomplete.
ContributorsGardner, Kara Diane (Author) / Hurlbut, Ben (Thesis advisor) / Brian, Jennifer (Thesis advisor) / Gur-Arie, Rachel (Committee member) / Arizona State University (Publisher)
Created2022
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When an individual is conceived there is a metaphorical roll of the dice. A game of chance is played with their genetics to which they cannot consent. Unlucky players could have inherited mild conditions such as chronic allergies to terrible diseases such as Cystic Fibrosis or Tay-Sachs. Controlling the genetics

When an individual is conceived there is a metaphorical roll of the dice. A game of chance is played with their genetics to which they cannot consent. Unlucky players could have inherited mild conditions such as chronic allergies to terrible diseases such as Cystic Fibrosis or Tay-Sachs. Controlling the genetics of an individual through the use of gene editing technology could be the key to ending this cycle of genetic diseases. Once detrimental diseases are now being cured through direct applications of genetic engineering. Even as we see the uses of genetic engineering technologies change the world, the more “sci-fi” applications have yet to be fully realized or explored. Editing hereditary genes before birth may have the ability to eliminate diseases from entire genetic lines, reduce the possibility for certain cancers and diseases, and perhaps even modify phenotypes in humans to create enhanced humans. Although this scientific field shows promise, it does have its reservations. Like any other scientific field, its ability to benefit humanity depends on its use.
ContributorsSchuler, Jacob (Co-author) / Silva, Anthony (Co-author) / Brian, Jennifer (Thesis director) / Ross, Christian (Committee member) / Harrington Bioengineering Program (Contributor) / School of Life Sciences (Contributor) / Barrett, The Honors College (Contributor)
Created2020-05