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- Member of: ASU Electronic Theses and Dissertations
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
This is a project about medicine and the history of a condition called premenstrual syndrome (PMS), its “discovery” and conceptual development at both scientific and socio-cultural levels. Since it was first mentioned in medical literature, PMS has been explored empirically as a medical condition and conceptually as non-somatic cultural phenomenon. Many attempts have been made to produce scientific, empirical evidence to bolster the theory of PMS as a biological disease. Some non-medical perspectives argue that invoking biology as the cause of PMS medicalizes a natural function of the female reproductive system and shallowly interrogates what is actually a complex bio-psycho-social phenomenon. This thesis questions both sides of this debate in order to reveal how criteria for PMS were categorized despite disagreement surrounding its etiology.
This thesis illustrates how the concept of PMS developed and was informed by the discovery of hormones and the resulting field of endocrinology that provided a framework for conceptualizing PMS. It displays how the development of the medical diagnostic category of PMS developed in tandem with the emergence of the field of endocrinology and was legitimized and effectively medicalized through this connection. The diagnosis of PMS became established though the diagnostic techniques like questionnaires in spite of persistent disagreement over its definition. The thesis shows how these medical concepts and practices legitimated the category of PMS, and how it has become ubiquitous in contemporary culture.
This thesis illustrates how the concept of PMS developed and was informed by the discovery of hormones and the resulting field of endocrinology that provided a framework for conceptualizing PMS. It displays how the development of the medical diagnostic category of PMS developed in tandem with the emergence of the field of endocrinology and was legitimized and effectively medicalized through this connection. The diagnosis of PMS became established though the diagnostic techniques like questionnaires in spite of persistent disagreement over its definition. The thesis shows how these medical concepts and practices legitimated the category of PMS, and how it has become ubiquitous in contemporary culture.
ContributorsZietal, Bianca (Author) / Hurlbut, James (Thesis advisor) / Robert, Jason (Committee member) / Brian, Jennifer (Committee member) / Arizona State University (Publisher)
Created2016
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
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