The Berman Institute will be well represented at the 26th annual meeting of the American Society for Bioethics and Humanities (ASBH), “What Does It Mean to be Human?” with a group of faculty, fellows, and students scheduled to present. The full program is available online. Follow the meeting on twitter using #ASBH24
Preview our diverse presentations below by:
All times listed are Central.
Visit the Berman Institute table in the Networking Hall
Opening Luncheon
Visit the Berman Institute table in the Networking Hall
Presenter: Rosemary Laine
Abstract: What are the implications of fetal personhood movements on the legal status of pregnant people in the U.S. Post-Dobbs? As evidenced by Alabama’s Supreme Court ruling which defined frozen embryos as “extra-uterine children” the ramifications of Dobbs are far-reaching.
Etowah County, Alabama leads the nation in what some medical and legal experts describe as “pregnancy criminalization;” cases in which pregnancy is a necessary element of the crime. Although fueled by fetal personhood movements, pregnancy criminalization contributes to a variety of suboptimal pregnancy outcomes that hurt both members of the maternal-fetal dyad. Carceral settings are gender insensitive, and pregnant women are particularly vulnerable to abuse. Tutwiler Prison for Women in Wetumpka, Alabama was recently investigated for wide-spread sexual abuse of incarcerated women.
In this paper, I will argue that Alabama’s definition of “extra-uterine children” is a logical extension of fetal personhood movements. I will argue that the constitutional protection of abortion is foundational to the equal protection of pregnant persons under the law, and for the promotion of family health as evidenced by the stark disparities in maternal health in Alabama.
In sum, I will examine how socio-legal and medical systems work in tandem to cocreate expanded protections for fetal rights at the expense of the people who carry pregnancies in Alabama. I will present reproductive justice as an alternative pathway forward.
Promoting Equity without Sacrificing Pragmatism?: Tough Choices for Pragmatic Clinical Trials
Presenter: Kayla Mehl
Abstract: Embedded pragmatic clinical trials (ePCTs) aim to maintain rigorous research standards while producing valuable evidence to enhance patient care and health outcomes in the clinical setting. This approach aims to enhance the practical relevance of trials by capturing outcomes within the context of everyday patient care, thereby avoiding the need for extensive and costly research infrastructure. However, despite this pragmatic orientation, ePCTs encounter challenges in balancing the imperative of maintaining rigorous research standards with the goal of promoting health equity. In this paper, I argue that efforts to promote pragmatism and equity can sometimes be in tension with each other due to potential trade-offs between the two objectives.
One area of conflict is inclusive participant recruitment, where efforts to recruit a diverse sample may increase costs and compromise trial feasibility. Waivers of consent, while streamlining the recruitment process, may also raise ethical concerns and hinder trust between researchers and minority communities. Site selection for ePCTs often favors well-resourced institutions, potentially excluding historically underserved populations. Enhanced usual care, while addressing disparities in treatment access, can be resource-intensive and may not align with the trial’s pragmatic goals. Finally, while electronic health record (EHR) data streamline data collection, efforts to promote equity may require additional data collection for subgroup analysis, which may compromise the trial’s pragmatism. Balancing these tensions requires careful consideration and trial designs that prioritize both scientific rigor and social responsibility, ensuring that efforts to address health disparities are integral to the trial’s objectives.
Visit the Berman Institute table in the Networking Hall
Presenter: Nicole Foti
Abstract: This paper examines the project Open Insulin—a community-based group that sought to produce their own insulin in reaction to unaffordable insulin costs in the United States—as a lens to analyze the rise of “alternative therapeutic imaginaries.” Alternative therapeutic imaginaries are emerging as a particular form of social activity: a planning approach toward greater fragmentation, capitalization, and individualization of healthcare. Examples include health and biomedical practices undertaken by citizen and community scientists, do-it-yourself (DIY) patients, and others who challenge institutional medicine. Findings offer an ethnographic account of the construction of Open Insulin’s health politics, which I argue is inspired by forms of “direct social action.” Unlike conventional activism, which often involves making claims on the state or other power structures, direct social action involves direct intervention in segments of society. However, within the pharmaceutical space, this approach is complicated by several factors including safety regulations, the material conditions of research, and the need for varied forms of expertise. This paper explores how group members grappled with questions about the material and regulatory complexities of making a drug and the role of industry experts and scientific institutions, all of which made visible competing perspectives for how to address unaffordable medicines. I suggest that Open Insulin’s vision for community-produced and -owned medicines sheds lights on how growing mistrust of health institutions, as well as shrinking public responsibility over healthcare provisions, is translating to specific forms of social action to address issues of access that center technolibertarian ideologies.
‘Why Do You Ask?’ Eliciting the Public’s Moral Judgments in Bioethics Debates
Authors: Jared Smith (presenter); Anne Barnhill; Julian Savulescu; S. Matthew Liao; Matthew McCoy; Jennifer Blumenthal-Barby
Abstract: It is increasingly common for bioethicists to consult with stakeholders to solicit their judgments and attitudes about ethical questions and issues, with one sizable group being laypeople or the public. However, it is not always clear what the purpose of this engagement is or ought to be: do bioethicists seek the input of the public to help them arrive at a morally correct justified policy position, or do they seek this input to help them shape and frame their already-established moral position, or something else entirely? Here we discuss four distinct possible functions of collecting moral judgments from the public: issue spotting, messaging for adherence and social stability, substantive moral guidance, and procedural fairness. Issue spotting often consists in bioethicists seeking out an ‘on the ground’ perspective about what research is not being done and what ethical questions are not being asked. Messaging for adherence occurs when bioethicists seek the public’s views to better frame policies and recommendations that address the moral concerns of the public. In substantive moral guidance, public moral judgments help shape bioethical views partly because they help us get closer the most morally justified view. Procedural fairness concerns soliciting moral judgments from the public to satisfy a requirement to get input or participation into a decision or policy process. We offer core examples from the literature before discussing the strengths and weaknesses attendant to each. We conclude with preliminary questions bioethicists can ask themselves to clarify their reason for soliciting moral judgments from the public.
Transplant Providers’ Perceptions of the 6-Month Alcohol Abstinence “Rule” for Liver Transplantation
Authors: Janetta Brundage (presenter); Aura Abedon; Andrew Cameron; Po-Hung Chen; Olivia Kates; Whitney Langlee; Hannah Sung; Mayan Teles
Purpose: Recent research has provided evidence challenging the long-standing “6-month rule” requiring patients with alcohol-related liver disease (ALD) to have 6 months of alcohol abstinence before liver transplantation. However, early liver transplantation performed without the 6 months abstinence requirement remains controversial. Additionally, the extent to which providers’ perceptions should guide transplant policymaking is an understudied ethical issue in this context.
Methods: We conducted in-depth semi-structured interviews about the “6 months rule” and transplant evaluation processes for patients with ALD (11/2021-4/2022), purposively sampling providers who treated patients with ALD (n=26; e.g., transplant hepatologists, social workers, intensivists) and performed inductive thematic analysis.
Results: Many viewed the “6-month rule” as “arbitrary” and unhelpful in predicting post-transplant sobriety. Some viewed 6 months of alcohol abstinence as a good benchmark but stated that providers should be able to “make exceptions.” A few providers said 6 months is a “low bar” that does not ensure post-transplant sobriety. Chiefly, providers expressed a desire for a guideline taking into account “nuance[s]” of a patient’s situation as opposed to a strict rule, though some expressed concern about flexible guidelines being “enforced evenly.” Providers emphasized that an alcohol relapse prediction tool would be helpful in selecting candidates who were not likely to relapse post-transplant.
Conclusions: Providers’ perceptions of the “6-month rule” centered around whether it could accurately predict alcohol relapse post-transplant. However, it may be unethical to center a behavioral outcome (relapse) as the most important factor in making transplant selection decisions, rather than patient or even allograft survival.
Awardee: Mariam Khan
Hear from the awardees! Our Student Paper Award recipient will present her award-winning paper, and the 2024 Lifetime Achievement Award recipient will offer a reflection on the field and their career. There will be time for a Q&A after each speaker’s remarks.
Alumni and Friends of the Berman Institute are invited to our reception at The Train Shed in Union Station Hotel.
Register online or contact Allison Christopher to RSVP.
Group-Based Psychedelic Integration Communities
Authors: Katherine Cheung (presenter); David Yaden; Edward Jacobs; Caleigh Propes
Abstract: Psychedelics, 5-HT2A agonists such as psilocybin and LSD, are currently being studied for their potential therapeutic benefits, their ability to enhance wellbeing, and their immediate and long-term risks. However, given the intensity of the experience and the possibility of difficult or persisting effects, some have called for enhanced integration in the community. Psychedelic research settings have also been seeing calls for community initiatives and peer support post-trial, as the protocol-defined number of integrative psychotherapy sessions may be insufficient for some to make sense of their experiences.
In parallel, numerous companies and organizations have developed online or in-person psychedelic integration groups and services. These groups can often be readily found online by individuals or by word of mouth on forums such as Reddit. Individuals may seek out such groups for many reasons: in particular, in response to feelings of loneliness or connection or a desire for a psychedelic community, especially if their friends and family may be psychedelic-naive.
Here, we aim to assess (1) the role that community integration groups might play in the psychedelic care ecosystem, (2) the value that individuals might derive from being part of such a group, and (3) the benefits and risks for physicians and researchers to refer or recommend an integration group to patients. In particular, we canvass risks such as belief-shaping, the possibility of cult-like dynamics, and inadequate preparation: benefits may include a space of shared identity and the sharing of integration strategies.
Authors: Kadija Ferryman (presenter); John Henry Brems; James Womer; Diana Bouhassira; Meredith McCormack
Abstract: Previously, interpretation of pulmonary function tests (PFTs) relied on race-specific reference equations, which presumed that normal lung function is lower among Black than White individuals. This race-specific approach faced intense criticism within the past few years as it propagated a notion of biological essentialism to race, and it worsened health inequities among Black and Asian individuals by disadvantaging them in opportunities such as receiving disability benefits or obtaining a lung transplant. In 2023, the guidelines for PFT interpretation newly recommended use of a race-neutral approach, where lung function is interpreted the same way for all patients regardless of race. Despite the recommendation and its potential to promote distributive justice, the extent to which it has been implemented in practice remains unclear. Not all pulmonologists agree with a race-neutral approach, and some PFT labs currently use decades-old (and race-specific) interpretation standards, which together suggest significant challenges to de-implementing a race-specific approach to lung function interpretation. To better understand factors that influence PFT labs’ decision and ability to update to race-neutral reference equations, we are conducting semi-structured interviews with approximately 25 individuals—including medical directors, lab managers, and technicians—from PFT labs across the United States, who are recruited from a nationally available educational course on PFTs. Results from thematic analyses will be discussed. We will examine implications of our findings for ongoing efforts to combat racism in clinical algorithms, and we will discuss how they inform strategies to promote racial equity and distributive justice among patients with respiratory disease.
Workshop
Panelists: Stephen Molldrem (moderator); Jonathan Shaffer (presenter); Zackary Berger (presenter); Krishna Chokshi (presenter)
This workshop aims to expand bioethics’ horizons of political possibility. Bioethics positions itself as a neutral arbiter; indeed, ASBH bylaws forbid the association from taking “positions on substantive moral and policy issues.” This puts bioethics at odds with institutions like the World Health Organization and United Nations, which advocate universal healthcare as a right. Bioethics’ neutrality prevents it from engaging in movements to build the healthcare system that most in the field say is needed – one which is equitable along lines of race, class, gender, and sexuality; redistributes resources towards the elimination of disparities; and ensures access. Bioethics also contributes to the institutional reproduction of academic medical centers (AMCs), which generally make profits by maintaining exploitative relationships with communities which provide them research subjects, patients, workers, and revenue. Clinicians at AMCs must then treat patients in desperate straits without adequate support, while being told by employers to center social determinants of health in their practices and to further the aims of patient safety and equity. However, rarely are these commitments reflected in AMCs’ behaviors toward patients, communities, or employees. Instead, burdens are borne by healthcare workers and clinical ethicists, who address issues related to patient safety, quality, and equity for some of the most marginalized. Though the clinical ethicist’s job is often to disambiguate issues for individual patients, they have a valuable potential role in advancing systems-level equity. We propose to re-envision bioethics’ mandate to include advocacy to address the root causes of inequities, which requires courage and consensus.
Authors: Alanna Bergman (presenter); Cynda Rushton; Katie Nelson; Sandy Swoboda
Abstract: Nurse leaders, though heterogeneous, are bound together by a common Code of Ethics. Nurse leaders apply their Code of Ethics to patient scenarios and to their interactions with nursing colleagues who rely on their leaders as advocates and exemplars of ethical nursing practice. The COVID-19 pandemic subjected nurse leaders to extraordinary stressors with the potential for emotional, physical, and moral injury. Our team conducted a qualitative study exploring the experiences and scenarios that exposed nurse leaders to moral injury and strategies that nurse leaders employ to bolster their integrity as care providers and moral human beings. We used a template organization style to organize qualitative data with a deductive analytic process to code data and build themes.
Of 1,063 leaders who completed an online survey about moral injury and moral resilience during the pandemic, 183 leaders provided open-ended responses pertinent to the study aims. Five themes emerged: 1) Absent nursing voice; 2) An inability to say no to unfair labor practices; 3) Abandonment and missing leadership 4) Leadership capacity; and 5) Finances over patients. Overall nurse leaders felt abandoned, exploited, and betrayed by their superiors and their organizations. Moreover, nurse leaders were further injured by their inability to protect vulnerable patients and staff from harm. These themes highlight an absence of trust within healthcare organizations exacerbated by the pandemic. We offer suggestions for repairing organizational trust which may bolster the moral resilience of nurse leaders and translate into patient and staff safety, autonomy, and equity.
Ethical Frameworks and Digital Therapeutics
Authors: Odia Kane (presenter); Kadija Ferryman
Abstract: Digital therapeutics (DTxs) are health apps and websites that support the self-management, prevention, and treatment of a variety of health conditions. In the United States, most DTxs require a prescription from a medical professional for users to gain access. In addition, nearly all DTxs undergo clinical trials for Food and Drug Administration (FDA) approval. Several frameworks exist to guide the ethical collection and use of data for Internet applications (apps), such as McCoy and colleagues’ “Ethical Responsibilities for Companies that Process Personal Data (McCoy et al 2023). Although many aspects of this framework can be applied to DTXs, there are some aspects that do not address these tools’ implications, such as the imperative to minimize the collection of data, and the imperative to offer fewer choices about data. In this talk, we will identify how where this framework can be useful for DTXs and where it is limited. We conclude with recommendations for augmenting this framework to be more useful for DTXs.
‘Why Do You Ask?’ Eliciting the Public’s Moral Judgments in Bioethics Debates
Presenters: Jared Smith (presenter); Anne Barnhill; Julian Savulescu; S. Matthew Liao; Matthew McCoy; Jennifer Blumenthal-Barby
Abstract: It is increasingly common for bioethicists to consult with stakeholders to solicit their judgments and attitudes about ethical questions and issues, with one sizable group being laypeople or the public. However, it is not always clear what the purpose of this engagement is or ought to be: do bioethicists seek the input of the public to help them arrive at a morally correct justified policy position, or do they seek this input to help them shape and frame their already-established moral position, or something else entirely? Here we discuss four distinct possible functions of collecting moral judgments from the public: issue spotting, messaging for adherence and social stability, substantive moral guidance, and procedural fairness. Issue spotting often consists in bioethicists seeking out an ‘on the ground’ perspective about what research is not being done and what ethical questions are not being asked. Messaging for adherence occurs when bioethicists seek the public’s views to better frame policies and recommendations that address the moral concerns of the public. In substantive moral guidance, public moral judgments help shape bioethical views partly because they help us get closer the most morally justified view. Procedural fairness concerns soliciting moral judgments from the public to satisfy a requirement to get input or participation into a decision or policy process. We offer core examples from the literature before discussing the strengths and weaknesses attendant to each. We conclude with preliminary questions bioethicists can ask themselves to clarify their reason for soliciting moral judgments from the public.
Workshop
Presenters: Stephen Molldrem (moderator); Jonathan Shaffer (presenter); Zackary Berger (presenter); Krishna Chokshi (presenter)
This workshop aims to expand bioethics’ horizons of political possibility. Bioethics positions itself as a neutral arbiter; indeed, ASBH bylaws forbid the association from taking “positions on substantive moral and policy issues.” This puts bioethics at odds with institutions like the World Health Organization and United Nations, which advocate universal healthcare as a right. Bioethics’ neutrality prevents it from engaging in movements to build the healthcare system that most in the field say is needed – one which is equitable along lines of race, class, gender, and sexuality; redistributes resources towards the elimination of disparities; and ensures access. Bioethics also contributes to the institutional reproduction of academic medical centers (AMCs), which generally make profits by maintaining exploitative relationships with communities which provide them research subjects, patients, workers, and revenue. Clinicians at AMCs must then treat patients in desperate straits without adequate support, while being told by employers to center social determinants of health in their practices and to further the aims of patient safety and equity. However, rarely are these commitments reflected in AMCs’ behaviors toward patients, communities, or employees. Instead, burdens are borne by healthcare workers and clinical ethicists, who address issues related to patient safety, quality, and equity for some of the most marginalized. Though the clinical ethicist’s job is often to disambiguate issues for individual patients, they have a valuable potential role in advancing systems-level equity. We propose to re-envision bioethics’ mandate to include advocacy to address the root causes of inequities, which requires courage and consensus.
Presenters: Kadija Ferryman (presenter); John Henry Brems; James Womer; Diana Bouhassira; Meredith McCormack
Abstract: Previously, interpretation of pulmonary function tests (PFTs) relied on race-specific reference equations, which presumed that normal lung function is lower among Black than White individuals. This race-specific approach faced intense criticism within the past few years as it propagated a notion of biological essentialism to race, and it worsened health inequities among Black and Asian individuals by disadvantaging them in opportunities such as receiving disability benefits or obtaining a lung transplant. In 2023, the guidelines for PFT interpretation newly recommended use of a race-neutral approach, where lung function is interpreted the same way for all patients regardless of race. Despite the recommendation and its potential to promote distributive justice, the extent to which it has been implemented in practice remains unclear. Not all pulmonologists agree with a race-neutral approach, and some PFT labs currently use decades-old (and race-specific) interpretation standards, which together suggest significant challenges to de-implementing a race-specific approach to lung function interpretation. To better understand factors that influence PFT labs’ decision and ability to update to race-neutral reference equations, we are conducting semi-structured interviews with approximately 25 individuals—including medical directors, lab managers, and technicians—from PFT labs across the United States, who are recruited from a nationally available educational course on PFTs. Results from thematic analyses will be discussed. We will examine implications of our findings for ongoing efforts to combat racism in clinical algorithms, and we will discuss how they inform strategies to promote racial equity and distributive justice among patients with respiratory disease.
Ethical Frameworks and Digital Therapeutics
Presenter: Odia Kane (presenter); Kadija Ferryman
Abstract: Digital therapeutics (DTxs) are health apps and websites that support the self-management, prevention, and treatment of a variety of health conditions. In the United States, most DTxs require a prescription from a medical professional for users to gain access. In addition, nearly all DTxs undergo clinical trials for Food and Drug Administration (FDA) approval. Several frameworks exist to guide the ethical collection and use of data for Internet applications (apps), such as McCoy and colleagues’ “Ethical Responsibilities for Companies that Process Personal Data (McCoy et al 2023). Although many aspects of this framework can be applied to DTXs, there are some aspects that do not address these tools’ implications, such as the imperative to minimize the collection of data, and the imperative to offer fewer choices about data. In this talk, we will identify how where this framework can be useful for DTXs and where it is limited. We conclude with recommendations for augmenting this framework to be more useful for DTXs.
Presenter: Nicole Foti
Abstract: This paper examines the project Open Insulin—a community-based group that sought to produce their own insulin in reaction to unaffordable insulin costs in the United States—as a lens to analyze the rise of “alternative therapeutic imaginaries.” Alternative therapeutic imaginaries are emerging as a particular form of social activity: a planning approach toward greater fragmentation, capitalization, and individualization of healthcare. Examples include health and biomedical practices undertaken by citizen and community scientists, do-it-yourself (DIY) patients, and others who challenge institutional medicine. Findings offer an ethnographic account of the construction of Open Insulin’s health politics, which I argue is inspired by forms of “direct social action.” Unlike conventional activism, which often involves making claims on the state or other power structures, direct social action involves direct intervention in segments of society. However, within the pharmaceutical space, this approach is complicated by several factors including safety regulations, the material conditions of research, and the need for varied forms of expertise. This paper explores how group members grappled with questions about the material and regulatory complexities of making a drug and the role of industry experts and scientific institutions, all of which made visible competing perspectives for how to address unaffordable medicines. I suggest that Open Insulin’s vision for community-produced and -owned medicines sheds lights on how growing mistrust of health institutions, as well as shrinking public responsibility over healthcare provisions, is translating to specific forms of social action to address issues of access that center technolibertarian ideologies.
Ethical Frameworks and Digital Therapeutics
Presenter: Odia Kane (presenter); Kadija Ferryman
Abstract: Digital therapeutics (DTxs) are health apps and websites that support the self-management, prevention, and treatment of a variety of health conditions. In the United States, most DTxs require a prescription from a medical professional for users to gain access. In addition, nearly all DTxs undergo clinical trials for Food and Drug Administration (FDA) approval. Several frameworks exist to guide the ethical collection and use of data for Internet applications (apps), such as McCoy and colleagues’ “Ethical Responsibilities for Companies that Process Personal Data (McCoy et al 2023). Although many aspects of this framework can be applied to DTXs, there are some aspects that do not address these tools’ implications, such as the imperative to minimize the collection of data, and the imperative to offer fewer choices about data. In this talk, we will identify how where this framework can be useful for DTXs and where it is limited. We conclude with recommendations for augmenting this framework to be more useful for DTXs.
Transplant Providers’ Perceptions of the 6-Month Alcohol Abstinence “Rule” for Liver Transplantation
Presenter: Janetta Brundage (presenter); Aura Abedon; Andrew Cameron; Po-Hung Chen; Olivia Kates; Whitney Langlee; Hannah Sung; Mayan Teles
Purpose: Recent research has provided evidence challenging the long-standing “6-month rule” requiring patients with alcohol-related liver disease (ALD) to have 6 months of alcohol abstinence before liver transplantation. However, early liver transplantation performed without the 6 months abstinence requirement remains controversial. Additionally, the extent to which providers’ perceptions should guide transplant policymaking is an understudied ethical issue in this context.
Methods: We conducted in-depth semi-structured interviews about the “6 months rule” and transplant evaluation processes for patients with ALD (11/2021-4/2022), purposively sampling providers who treated patients with ALD (n=26; e.g., transplant hepatologists, social workers, intensivists) and performed inductive thematic analysis.
Results: Many viewed the “6-month rule” as “arbitrary” and unhelpful in predicting post-transplant sobriety. Some viewed 6 months of alcohol abstinence as a good benchmark but stated that providers should be able to “make exceptions.” A few providers said 6 months is a “low bar” that does not ensure post-transplant sobriety. Chiefly, providers expressed a desire for a guideline taking into account “nuance[s]” of a patient’s situation as opposed to a strict rule, though some expressed concern about flexible guidelines being “enforced evenly.” Providers emphasized that an alcohol relapse prediction tool would be helpful in selecting candidates who were not likely to relapse post-transplant.
Conclusions: Providers’ perceptions of the “6-month rule” centered around whether it could accurately predict alcohol relapse post-transplant. However, it may be unethical to center a behavioral outcome (relapse) as the most important factor in making transplant selection decisions, rather than patient or even allograft survival.
Awardee: Mariam Khan
Hear from the awardees! Our Student Paper Award recipient will present her award-winning paper, and the 2024 Lifetime Achievement Award recipient will offer a reflection on the field and their career. There will be time for a Q&A after each speaker’s remarks.
Presenter: Rosemary Laine
Abstract: What are the implications of fetal personhood movements on the legal status of pregnant people in the U.S. Post-Dobbs? As evidenced by Alabama’s Supreme Court ruling which defined frozen embryos as “extra-uterine children” the ramifications of Dobbs are far-reaching.
Etowah County, Alabama leads the nation in what some medical and legal experts describe as “pregnancy criminalization;” cases in which pregnancy is a necessary element of the crime. Although fueled by fetal personhood movements, pregnancy criminalization contributes to a variety of suboptimal pregnancy outcomes that hurt both members of the maternal-fetal dyad. Carceral settings are gender insensitive, and pregnant women are particularly vulnerable to abuse. Tutwiler Prison for Women in Wetumpka, Alabama was recently investigated for wide-spread sexual abuse of incarcerated women.
In this paper, I will argue that Alabama’s definition of “extra-uterine children” is a logical extension of fetal personhood movements. I will argue that the constitutional protection of abortion is foundational to the equal protection of pregnant persons under the law, and for the promotion of family health as evidenced by the stark disparities in maternal health in Alabama.
In sum, I will examine how socio-legal and medical systems work in tandem to cocreate expanded protections for fetal rights at the expense of the people who carry pregnancies in Alabama. I will present reproductive justice as an alternative pathway forward.
Promoting Equity without Sacrificing Pragmatism?: Tough Choices for Pragmatic Clinical Trials
Presenter: Kayla Mehl
Abstract: Embedded pragmatic clinical trials (ePCTs) aim to maintain rigorous research standards while producing valuable evidence to enhance patient care and health outcomes in the clinical setting. This approach aims to enhance the practical relevance of trials by capturing outcomes within the context of everyday patient care, thereby avoiding the need for extensive and costly research infrastructure. However, despite this pragmatic orientation, ePCTs encounter challenges in balancing the imperative of maintaining rigorous research standards with the goal of promoting health equity. In this paper, I argue that efforts to promote pragmatism and equity can sometimes be in tension with each other due to potential trade-offs between the two objectives.
One area of conflict is inclusive participant recruitment, where efforts to recruit a diverse sample may increase costs and compromise trial feasibility. Waivers of consent, while streamlining the recruitment process, may also raise ethical concerns and hinder trust between researchers and minority communities. Site selection for ePCTs often favors well-resourced institutions, potentially excluding historically underserved populations. Enhanced usual care, while addressing disparities in treatment access, can be resource-intensive and may not align with the trial’s pragmatic goals. Finally, while electronic health record (EHR) data streamline data collection, efforts to promote equity may require additional data collection for subgroup analysis, which may compromise the trial’s pragmatism. Balancing these tensions requires careful consideration and trial designs that prioritize both scientific rigor and social responsibility, ensuring that efforts to address health disparities are integral to the trial’s objectives.
Group-Based Psychedelic Integration Communities
Presenters: Katherine Cheung (presenter); David Yaden; Edward Jacobs; Caleigh Propes
Abstract: Psychedelics, 5-HT2A agonists such as psilocybin and LSD, are currently being studied for their potential therapeutic benefits, their ability to enhance wellbeing, and their immediate and long-term risks. However, given the intensity of the experience and the possibility of difficult or persisting effects, some have called for enhanced integration in the community. Psychedelic research settings have also been seeing calls for community initiatives and peer support post-trial, as the protocol-defined number of integrative psychotherapy sessions may be insufficient for some to make sense of their experiences.
In parallel, numerous companies and organizations have developed online or in-person psychedelic integration groups and services. These groups can often be readily found online by individuals or by word of mouth on forums such as Reddit. Individuals may seek out such groups for many reasons: in particular, in response to feelings of loneliness or connection or a desire for a psychedelic community, especially if their friends and family may be psychedelic-naive.
Here, we aim to assess (1) the role that community integration groups might play in the psychedelic care ecosystem, (2) the value that individuals might derive from being part of such a group, and (3) the benefits and risks for physicians and researchers to refer or recommend an integration group to patients. In particular, we canvass risks such as belief-shaping, the possibility of cult-like dynamics, and inadequate preparation: benefits may include a space of shared identity and the sharing of integration strategies.
Presenters: Alanna Bergman (presenter); Cynda Rushton; Katie Nelson; Sandy Swoboda
Abstract: Nurse leaders, though heterogeneous, are bound together by a common Code of Ethics. Nurse leaders apply their Code of Ethics to patient scenarios and to their interactions with nursing colleagues who rely on their leaders as advocates and exemplars of ethical nursing practice. The COVID-19 pandemic subjected nurse leaders to extraordinary stressors with the potential for emotional, physical, and moral injury. Our team conducted a qualitative study exploring the experiences and scenarios that exposed nurse leaders to moral injury and strategies that nurse leaders employ to bolster their integrity as care providers and moral human beings. We used a template organization style to organize qualitative data with a deductive analytic process to code data and build themes.
Of 1,063 leaders who completed an online survey about moral injury and moral resilience during the pandemic, 183 leaders provided open-ended responses pertinent to the study aims. Five themes emerged: 1) Absent nursing voice; 2) An inability to say no to unfair labor practices; 3) Abandonment and missing leadership 4) Leadership capacity; and 5) Finances over patients. Overall nurse leaders felt abandoned, exploited, and betrayed by their superiors and their organizations. Moreover, nurse leaders were further injured by their inability to protect vulnerable patients and staff from harm. These themes highlight an absence of trust within healthcare organizations exacerbated by the pandemic. We offer suggestions for repairing organizational trust which may bolster the moral resilience of nurse leaders and translate into patient and staff safety, autonomy, and equity.