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Thesis advisor: Lisa S. Cahill / Weaving qualitative interview analysis together with ethical inquiry, this project traces the trajectories of Catholic women and couples who hope to form families but contend with infertility and consider whether and how to treat it. Motivating this study is the challenge of balancing individual agency with the role of powerful social forces that shape agency. Examining and critiquing the social forces that shape the circumstances in which Catholic women and couples in the U.S. contend with infertility, this dissertation demonstrates how agential freedom is conditioned by familial, clinical, and ecclesial cultures and structures. It harnesses sociological tools and theological resources to argue for an account of agency that prioritizes critical engagement of contextual factors and suggests that the Church as a moral teacher ought to support the cultivation of this agency. Chapter one challenges the model of moral agency found in magisterial teachings that oppose the use of contraception and reproductive technologies, which suggests that lay Catholics ought to obey magisterially prescribed norms regardless of context. The chapter argues that the magisterial model of moral agency does not adequately account for the role of context in shaping agency, and it instead proposes an account of contextually situated agency that resonates with Pope Francis’ prioritization of contextual realties in his apostolic exhortation Amoris Laetitia. The second chapter demonstrates how various social forces, including structures supporting heterosexual marriage, cultural ideals related to biological childbearing, and ecclesial structures of marital formation all contribute to U.S. Catholic couples’ family formation choices and can intensify burdens of infertility. The chapter proposes a reorientation of Catholic support for families centered on justice in relationships and Christian discipleship instead of family structure. The third chapter examines how cultural ideals related to childbearing, the medicalization of infertility, and social location all contribute to shaping how Catholic women in the U.S. make sense of infertility. Contesting the cultural notion that women are responsible for infertility with reference to a criterion of justice, it describes infertility as a kind of biological bad luck also shaped by systemic forces. Structural injustices related to sexism and racism in healthcare function to distribute the bad luck of infertility unjustly based on societal vulnerabilities, which constitutes a kind of social sin. The fourth chapter considers how two different understandings of Catholic identity shape treatment trajectories of Catholics contending with infertility toward either secular fertility clinics or Catholic clinics. It then examines these two clinical settings, demonstrating how contextual pressures shape how Catholics make treatment choices and underscoring how Catholic moral commitments can support moral agents’ resistance to these pressures. Its final section considers the social forces at work in adoption and fostering. The final chapter turns to the role of the Church in supporting the moral agency of Catholics making decisions regarding family formation and infertility treatment. After analyzing and critiquing the dominant ideals found in Catholic and secular support group settings, it suggests that synodal commitments of mutual listening and inclusive dialogue can support the development of new structures of moral discernment in the Church. It concludes by considering how the social witness of the Church can contribute to the transformation of sinful social forces that constrain the freedom of women and couples contending with infertility. / Thesis (PhD) — Boston College, 2023. / Submitted to: Boston College. Graduate School of Arts and Sciences. / Discipline: Theology.

Both within and outside of the academy, most commentary treats neural engineering, and the “crisis of agency” it allegedly introduces, as something new. Yet my dissertation shows that technologies to modulate and record brain activity have been (1) a key factor in the creation of the discipline of neuroscience, (2) a central concern in the development of liberal ideologies of personhood and freedom, and (3) a critical feature of the what scholars have recently termed the “data economy” or “surveillance capitalism.” My work makes these arguments by offering the first monograph length scholarly study of neural engineering, documenting the rise, fall, and reappearance of brain implant technology. Techniques to stimulate and record the human brain were at the core of the creation of the discipline of neuroscience, and after 1951, long-term brain implant systems were used for research in dozens of human patients. The public backlash against brain engineering was enormous, allying both conservatives and New Left in the latter half of the 1960s, and by the late 1970s the once thriving research field had disappeared. But brain implants were not gone for good: in 2013, President Obama announced the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative to map the brain with a wireless brain implant called Deep Brain Stimulation (DBS) hailed as its flagship technology. While brain implants in the 1970s seemed to threaten the existence of an autonomous self on which both the free market and democracy were premised, brain implants in the era of big data promise dazzling economic value. The global brain stimulation market is projected to be worth $6.2 billion by 2022, much of it underwritten by US military funding, with data monopolists like Alphabet and Facebook vying with Elon Musk to establish brain implant labs. In contrast to prevalent commentary that takes brain implants to have introduced a crisis of the agentic human, I argue that neural engineering’s reappearance has been made possible by permutations in liberal ideologies of “freedom” and “the human”; changes which I argue are conditioned by rise of post-industrial or “data” capitalism. As a critical account of the neurosciences, the story my dissertation tells differs from the many accounts of “neurosubjectivity” currently influential in STS, which date changes in liberal conceptions of the human to the ascent of neuroscience in the 1990s. Instead, the work shows how the politics of “freedom” in the latter half of the twentieth century came to be defined against neural engineering as a foil. It documents how debates about brain implants played a central role in constructing key liberal political concerns; among them bioethics, privacy law, and the legal construction of the body as private property. These changes directly undergirded the subsequent development of the neurosciences, chiefly the Reagan-era fusion of the US academy with the biotech industry. In this way, the project shows that the 1970s defeat of neural engineering ramified into the necessary conditions for its re-emergence at the cutting edge of “data capitalism.” Ethnographic research for the project began in 2014, and I spent a total of 34 months in four labs in the US and France developing DBS for psychiatric disorder. 14 of those months were in a lab whose project was funded by DARPA, the experimental sciences branch of the US military. Archival research was conducted at 20 institutions. The dissertation begins in the 1930s by charting the network of neurophysiologists who would constitute the brain as an electrical organ. These neurophysiologists would form the first organization to call its object “neuroscience,” the International Brain Research Organization (IBRO), funded by UNESCO in 1958 to bring together Soviet and Western neurophysiologists. IBRO’s aim was to construct a universal science of the brain, one that could resist the deforming hand of the US military state’s control of science. But IBRO would be defeated by the militarization of neuroscience in the late 1960s, and its progressive imagination for neural engineering would become a bête noir for the 1970s politics of freedom. The second section offers an intellectual history of the response to neural engineering 1951-76, from midcentury panics about “totalitarian” mind control to the New Left’s mobilization against “psychiatric technocracy.” I recount the key role of brain implant research in the 1972-76 Congressional hearings that would produce the fields of bioethics and medical privacy law, while causing neural engineering to disappear. The “reinvention” of DBS hinged on its application to movement disorders like Parkinson’s in the 1980s, which allowed scientists to frame the technology as one that restored, rather than violated, individual agency. The final section begins with 2005 research “breakthrough” that began investigating—“for the first time”— brain stimulation for psychiatric disorder. Drawing on my ethnographic work, the last section follows DBS research from clinical trials to biotech startups, mapping emerging conceptions and practices of selfhood, agency, and value production. I show how these practices of scientific experimentation rely on liberal contractual forms: an agentic “self” who “consents” to experimental procedures, even while the data produced by these experiments are reframing key concepts like “decisions,” “agency,” and “ownership.” I argue that this turn toward the data-productive brain does not signal the end of a politics of free will; rather, the new forms of “surveillance” capitalism enabled by brain implant research rely on strategically invoking the agentic liberal subject through legal forms like the contract and bioethical “consent.”

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Local context should be considered a significant social determinant of health for immigrant communities, particularly those with precarious legal status. In this thesis I use a study done by Lilia Cervantes, MD and collegeaues of undocumented immigrants with end-stage renal disease attempting to access healthcare in three different US states to expand on my argument. Due to the lack of comprehensive federal immigration reform since 1986, many immigrants depend on the Emergency Medical and Active Labor Treatment Act (EMTALA) to access healthcare, which provides emergency-only care. Without federal mandates, further healthcare for this population is dependent on local laws and/or safety-net services. As a result, this local context impacts their medical outcomes, healthcare utilization and economic costs and acts as a potential moral hazard to family, patients and providers of and serving immigrant communities. / Urban Bioethics

Background and aim: Lung cancer is the leading cause of cancer incidence and mortality in Canada. Population-based screening programs using low dose computed tomography are being more widely used. Screening reduces lung cancer mortality. It also introduces potential ethical issues that need to be elucidated to inform the ethical, equitable, and effective implementation of screening programs. This aim of this research was to begin developing an understanding of what the ethical issues are and how they are being, and should be, approached in health policy. Methods: Using empirical ethics inquiry, this research produced descriptive evidence via three independent studies: a systematic literature review and mixed methods integrative synthesis of public perspectives on screening benefits and harms, and two qualitative description studies about public and key informants’ ethical and social values on ethical issues in screening. Results: The major finding of this research was the preponderance of ethical issues located within health and social systems and structures, including equity of screening access, stigma against people who currently smoke commercial tobacco, commercialization of tobacco, and the need for increased investment in primary prevention of lung cancer. These ethical issues reflect the social, economic, and political determinants of lung cancer and the means available to reduce the burden of lung cancer in Canada, including but not limited to screening. In health policy, there was a lack of ethical frameworks or principles currently being used to address these ethical issues and the sometimes-conflicting perspectives found between the public and key informants. Discussion: Future empirical and normative research is needed to understand ethical and social values related to screening by populations with high lung cancer incidence and mortality, and to integrate empirical evidence with appropriate ethical theories to make recommendations for ethical, equitable, and effective population-based LDCT lung cancer screening policy in Canada. / Thesis / Candidate in Philosophy / Lung cancer is the top cause of cancer in Canada. An estimated 30,000 people were diagnosed with lung cancer and 20,700 people died from lung cancer in 2022. Screening is being more widely used to find and treat lung cancer in earlier stages. There are some ethical questions to consider, like how to ensure that screening programs are fair and effective. This research focused on understanding what the ethical issues are and how they could be solved in health policy. Perspectives on ethical issues were collected and analyzed from the public and lung cancer screening leaders. The two major ethical issues were fair access to screening and stigma against people who currently smoke commercial tobacco. There was a lack of ethical guidance to address these issues in health policy. Ethical concepts about justice and individual choice, and ethics research with key communities, may help navigate ethical issues in health policy.

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Importance – The homeless face higher rates of morbidity and mortality than the general population, and have lower rates of end-of-life care planning. An effective and sustainable intervention, to provide living wills and durable power of attorney, is required to protect the autonomy of a vulnerable population. Objective – To determine if medical student-led 1:1 counseling is as effective as social worker-led counseling as reported in the literature, determined by rate of advanced directive completion. Design – A focus groups and educational sessions on EOL care and ADs were conducted at 2 shelters, after which participants were offered the opportunity to sign up for a 1:1 counseling session with a medical student volunteer. Rates of sign-ups and completion were recorded. Setting – 2 North Philadelphia homeless shelters, requiring either an Axis I or current substance abuse diagnosis for residence. Participants – A convenience sample of 20 homeless men were approached; 10 enrolled in the study. Interventions – Educational sessions, focus groups, and 1:1 AD completion counseling sessions Main Outcomes – Interest in and completion of an advanced directive. Results – 9 participants signed up to complete ADs after an informational session. At the conclusion of the study, 8 of them (88.8%) completed ADs. 40% of the total participants completed an AD. Conclusions – Similar rates of advanced directive completion were achieved with the student-led intervention compared to a previous intervention in the literature. Further study with a larger sample including homeless women should be conducted to provide a generalized conclusion. / Urban Bioethics

Background: The childbearing years place socioeconomically disadvantaged African American women at increased risk for poor diet quality, excess weight gain, and cardiometabolic complications. Little is known about the attitudes, beliefs, values, and contextual constraints that shape these high risk mothers’ dietary and physical activity behaviors. Objective: The purpose of this study was to examine health perceptions of diet quality and physical activity among low-income African American women in the early postpartum period, and how these perceptions manifest as barriers or facilitators to health. Additionally, we examined how they may differ by known predictors of health, such as education, age, parity, and BMI. Methods: We conducted semi-structured, individual interviews with 20 women who were between 3-6 months postpartum. Mothers were approached and recruited in the waiting room of a university-affiliated, outpatient prenatal care clinic in Philadelphia, PA. Enrollment in the study was restricted to women who self-identified as African American, were at least 18 years old, and met the federal income guidelines to qualify for assistance (Medicaid, WIC). Individual interviews were audio recorded and transcribed verbatim, with transcripts verified by research staff. Thematic coding and content analysis were performed by 3 researchers using NVivo 10 software to assist with data management. Results: Barriers and facilitators of healthy eating and physical activity after childbirth fell into 4 major themes of mothers’ lives: 1) new structural reality in the postpartum period; 2) physiologic changes after delivery; 3) correct/incorrect perceptions of healthy eating and activity; and 4) social determinants influencing behaviors. Mothers described the transition from pregnancy to the early postpartum period as having a significant negative impact on their eating and activity behaviors due to heightened fatigue, time constraints, and the monotony of daily life with a newborn. We found more than double the number of perceived barriers to engaging in healthy eating than facilitators with regard to fluctuations in food supply, cost of food, and the built environment. Mothers with obesity and less education were more likely to have misperceptions; these misperceptions additionally served as strong barriers to making healthy lifestyle choices. Changes in mothers’ physical symptoms and health status (e.g., developing diabetes, hypertension), on the other hand, facilitated healthy behaviors. Conclusion: This research deepens our understanding of the primary drivers of health behaviors among low-income African American women in the postpartum period. We identified barriers which limit and facilitators which support these mothers’ ability to engage in healthy behaviors, though there were far fewer facilitators of healthy eating and physical activity. Interventions designed to overcome these barriers and capitalize on these facilitators have the potential to improve health outcomes for this population. / Urban Bioethics