No Choice but to Choose: The Technopolitics of Informed Consent

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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…

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.
Date Created
2023
Agent

Cripping Trans Childhood: A Critical Examination into the Legislating of the Trans Child

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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…

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.
Date Created
2023
Agent

Appearance-Based Shame In Medicine: How It Alters Patient Perception and Future Care

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…

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.

Date Created
2023-05
Agent

Appearance-Based Shame In Medicine: How It Alters Patient Perception and Future Care

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…

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.

Date Created
2023-05
Agent

Appearance-Based Shame In Medicine: How It Alters Patient Perception and Future Care

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…

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.

Date Created
2023-05
Agent

Barriers Preventing Minoritized Individuals From Being Accepted into Medical School

Description

As it currently stands, there are many barriers preventing racial minority students from being accepted into medical school at the same rates as their White peers. This has broad reaching effects that shape how medicine is practiced. In order to…

As it currently stands, there are many barriers preventing racial minority students from being accepted into medical school at the same rates as their White peers. This has broad reaching effects that shape how medicine is practiced. In order to help mitigate this issue, different schools and medical groups have begun to develop programs designed to assist students in being accepted into medical school. In this literature review, I further examine these programs by selecting 12 articles to further examine the programs they mentioned. From this examination, trends in the types of programs and the target demographics emerged. The types of programs included academic enrichment, research and lab exposure, mentorship, admissions preparation, counseling, postbaccalaureate or master’s programs, pre-entrance, and recruitment programs. Target demographics varied in age which affected the format of the program. Analyzing different programs revealed the ways in which minority students are currently being assisted and that there is no current standardized measure of the effectiveness of these programs. It will be important to determine effectiveness in order to eliminate these disparities which will be crucial in reducing health disparities nationally.

Date Created
2023-05
Agent

Using Speculative Fiction to Explore a "Precision Medicine" Future

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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’…

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.
Date Created
2022
Agent

Cis-men’s Perspectives on Male Birth Control

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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…

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.
Date Created
2022
Agent

Common Barriers to Exclusive Breastfeeding and How Breast Pump Access Can Help Mothers Overcome Those Barriers in the Departments of Santa Ana and Ahuachapán, El Salvador

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Description
The relationship between proper nutrition in the first 1,000 days of an infant’s life and better health is widely recognized as being one of the most important factors in creating a strong foundation for health throughout childhood. An important aspect…

The relationship between proper nutrition in the first 1,000 days of an infant’s life and better health is widely recognized as being one of the most important factors in creating a strong foundation for health throughout childhood. An important aspect of proper infant nutrition is exclusive breastfeeding in the first six months of life (Save the Children International, 2012). In El Salvador, the percentage of children that are not growing well (i.e. who are stunted, wasted, or overweight) is higher than the regional average for Central America (UNICEF, 2019). The goal of this research is to identify barriers to mothers’ abilities to exclusively breastfeed in the departments of Santa Ana and Ahuachapan, El Salvador, and what changes in behavior are observed when they are provided with a manual breast pump and educational resources about proper infant nutrition. Ninety-two mothers of infants between 0 and 6 months of age in 12 communities throughout these two departments participated in surveys about their infant’s nutrition and breastfeeding rates. Half of the women were surveyed prior to receiving education about proper infant nutrition and a manual breast pump (control group), and the other half were surveyed between 3 weeks and 6 months after participating in the class and receiving a breast pump (small initial group and experimental group). The mothers identify three main barriers to their ability to exclusively breastfeed: difficulty latching, time away from home, and low breastmilk supply. The mothers in the small initial group and experimental group identify specific ways in which the breast pump was a solution for those exact barriers. The percentage of women that were exclusively breastfeeding without access to a breast pump was 34%, and the percentage of women that were exclusively breastfeeding after the women in the experimental and small initial group received access to a breast pump was 54%. This suggests that universal breast pump access and promotion of breast pump usage may raise the national rates of exclusive breastfeeding and consequently improve health outcomes for infants and children in El Salvador.
Date Created
2022-05
Agent

Creative Frameworks: Developing Accessible Technological Frameworks for Creative Expression

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Description
Artistic expression can be made more accessible through the use of technological interfaces such as auditory analysis, generative artificial intelligence models, and simplification of complicated systems, providing a way for human driven creativity to serve as an input that allow…

Artistic expression can be made more accessible through the use of technological interfaces such as auditory analysis, generative artificial intelligence models, and simplification of complicated systems, providing a way for human driven creativity to serve as an input that allow users to creatively express themselves. Studies and testing were done with industry standard performance technology and protocols to create an accessible interface for creative expression. Artificial intelligence models were created to generate art based on simple text inputs. Users were then invited to display their creativity using the software, and a comprehensive performance showcased the potential of the system for artistic expression.
Date Created
2022-05
Agent
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