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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 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
While there is extensive information available about organizations that receive donated organs for transplant, much less is known about those that accept tissue and whole bodies for medical education and research. Throughout the United States, nontransplant anatomical donation organizations exist within an ambiguous sector of the donation industry, unencumbered by federal regulations. Although these companies adhere to the Uniform Anatomical Gift Act, the lack of a single entity responsible for overseeing their operations has led to public skepticism and animosity among competing businesses. Legislation has the potential to legitimize the industry. For it to be successful, however, the intricacies of a complex market that deals directly with the movement of human remains and intangible issues of human integrity and morality, must be thoroughly understood.
ContributorsGlynn, Emily Sanders (Author) / Brian, Jennifer (Thesis director) / Fisher, Rebecca (Committee member) / Barrett, The Honors College (Contributor) / School of Nutrition and Health Promotion (Contributor) / Department of English (Contributor)
Created2015-05
Description
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
The rate of cancer incidence is a morbid figure. Twenty years ago, 1 in 2 men and 1 in 3 women were predicted to be afflicted by cancer throughout their lifetime (Cancer Facts & Figures- 1998). In 2017, the rate remains the same ("Cancer Statistic Center"). Every year, more people are affected by cancer, which is a physiologically, psychologically, emotionally and socially devastating disease. And yet the language and metaphors we use to describe cancer focus our attention on the "fight" of the heroic individual against the brutal disease or on finding a cure. Despite this narrow rhetoric, there are many meaningful, supportive, and palliative measures designed to substantively and holistically care for cancer patients, beyond their medical treatment. Many of these interventions help the patient feel supported (and less alone in this "battle") by building robust communities. In this thesis, I argue the summer camps for children affected by cancer are meaningful interventions that offer palliative care throughout their treatment by creating support networks with peers going through similar medical procedures. Drawing on anecdotal evidence from three cancer camps and a detailed literature review of a subset of palliative interventions designed to promote well-being, this thesis proposes a new model for a summer camp that focuses on emotional processing emotional expression, positive psychology in order to improve palliative care for cancer patients.
ContributorsPearce, Spencer Taylor (Author) / Miller, April (Thesis director) / Brian, Jennifer (Committee member) / School of Molecular Sciences (Contributor) / Department of Psychology (Contributor) / Barrett, The Honors College (Contributor)
Created2017-12
Description
Treating a minor diagnosed with cancer is a difficult situation. However, cases in which doctors and the patient's family disagree about the proper course of treatment present complex scenarios when it comes to patient care. The forced treatment of Cassandra Callender came as a result of challenging interactions between the patient, the medical establishment, and the state. While the Connecticut Supreme Court mainly considered Cassandra's maturity and her mother's actions when deciding this case, there were more factors contributing to Cassandra's quality of care than her ability to make decisions. An evaluation of these factors demonstrates important implications for ensuring a minor receives the best care. Cassandra wished to pursue a means of treatment that would have fewer serious side effects than chemotherapy, but her assessment of her prognosis was markedly different than that of her doctors. While it is clear that Cassandra did not fully grasp the likelihood of death without chemotherapy treatment, her perspective should not have been fully ignored. The forced treatment inflicted serious (though short term) harm. To understand the full context of this case, this paper considers relevant legal doctrine, decision-making capabilities of minors, the problems and perils of chemotherapy, the role of the media, and the doctor-patient relationship. Developing a perspective based on these facets of Cassandra's case is important in determining how to facilitate the best interaction between doctor and patient and to make sure that future cases aid the patient and his or her family to make the best decision given the situation. Even when there is no consensus about what is best for a patient, more consideration must be given to the patient's perspective, beyond attempting to solely extend life.
ContributorsStoffer, Sidney Rae (Author) / Brian, Jennifer (Thesis director) / Cook-Deegan, Robert (Committee member) / School of Criminology and Criminal Justice (Contributor) / Department of Psychology (Contributor) / Barrett, The Honors College (Contributor)
Created2016-05
Description
Lithium ion batteries are quintessential components of modern life. They are used to power smart devices — phones, tablets, laptops, and are rapidly becoming major elements in the automotive industry. Demand projections for lithium are skyrocketing with production struggling to keep up pace. This drive is due mostly to the rapid adoption of electric vehicles; sales of electric vehicles in 2020 are more than double what they were only a year prior. With such staggering growth it is important to understand how lithium is sourced and what that means for the environment. Will production even be capable of meeting the demand as more industries make use of this valuable element? How will the environmental impact of lithium affect growth? This thesis attempts to answer these questions as the world looks to a decade of rapid growth for lithium ion batteries.
ContributorsMelton, John (Author) / Brian, Jennifer (Thesis director) / Karwat, Darshawn (Committee member) / Chemical Engineering Program (Contributor) / Barrett, The Honors College (Contributor)
Created2021-05
Description
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
Description
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
Description
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
Description
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