The BI at ASBH 2019

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The Berman Institute will be well represented at the 21st annual meeting of the American Society for Bioethics and Humanities (ASBH), as a group of faculty, fellows, and students are headed to Pittsburgh, PA, October 24 – 27, 2018.

Preview our diverse presentations (full program available online), and plan a visit to our booth in the ASBH exhibit hall replete with BI swag – (including this year’s limited edition wood cube basil planter!)

You can also follow us on Twitter: #ASBH19, featuring our @bermaninstitute, @aregenberg@kahnethx@tnrethx@DiStefano_MJ, and more.


Schedule at a Glance:

Thursday, October 24

8:00 am–11:30 am
Preconference Sessions
11:30 am-1:00 pm
Lunch (on your own)
1:00 pm-2:00 pm
Concurrent Sessions
2:15 pm-3:45 pm
Concurrent Sessions
4:00 pm-5:00 pm
Concurrent Sessions
5:15 pm-6:30 pm
Plenary Session
6:30 pm–8 pm
Opening Reception with

Friday, October 25

7:00 am–9:00 am
Continental Breakfast in the
Exhibit Hall
7:30 am-9:00 am
Meet-the-Professor Session
8:00 am–9:00 am
Concurrent Sessions
9:15 am–10:30 am
Plenary Session
11:00 am–12:00 pm
Concurrent Sessions

12:00 pm–1:30 pm
Lunch (on your own)
12:30 pm–1:30 pm
Affinity Group Meetings
1:45 pm–3:15 pm
Concurrent Sessions
3:30 pm-5:00 pm
Annual Members’ Meeting
Award Presentations
President’s Address
5:15 pm–6:15 pm
Reception for New Members
and Students
5:30-7:30 pm
Affinity Group Meetings

Saturday, October 26

7:00 am–8:00 am
Affinity Group Meetings
7:00 am-9:00 am
Continental Breakfast in the
Exhibit Hall
8:15 am–9:15 am
Concurrent Sessions

9:30 am–10:30 am
Plenary Session
10:45 am–11:45 am
Concurrent Sessions
11:45 am–1:15 pm
Lunch (on your own)
12:00 pm-1:00 pm
Affinity Group Meetings
1:15 pm–2:45 pm
Concurrent Sessions
3:00 pm-4:00 pm
Concurrent Sessions
4:15 pm-5:45 pm
Concurrent Sessions
6:00 pm-7:00 pm
Affinity Group Meetings

Sunday, October 27

7–8 am
Continental Breakfast
8 am–9:00 am
Concurrent Sessions
9:15 am–10:45 am
Concurrent Sessions
11:00 am-12:30 pm
Concurrent Sessions

Full Schedule:

–Thursday, October 24–

Concurrent Sessions

1:00 pm–2:00 pm | Location: Room 303

Improving Informed Consent in Research

Joseph Ali, JD; Holly Taylor, PhD; Nae-Yuh Wang, PhD; Daphne Washington, BA

Informed consent documents remain too long, complex and legalistic, threatening the ability of even committed potential research participants to understand research. Recent changes to U.S. regulations (Common Rule), as well as significant bioethics literature, suggest consent forms should be shorter and simpler. Despite decades of consent research, there is no simple, adaptable, evidence-based approach to improving participant understanding of research. Robust study of consent interventions in diverse, non-simulated research settings is critically important to effective communication of research information and adaptation of new (presently vague) consent “key information” requirements. In this session, we present the methods and core findings from a Greenwall Foundation-funded three-arm randomized consent intervention study conducted at a large research-intensive institution. This study developed and tested two reproducible consent approaches that are concise, emphasize key information, provide information in discrete chunks, and use lay language. Individuals considering enrollment across five ongoing clinical studies (target n = 300 participants) were randomized to receive either 1) the standard consent form and process (control), 2) a briefer consent fact sheet, or 3) a video consent summary based on the fact sheet and consisting of a conversation between the study PI and an actor playing a potential participant. A previously developed tool (Consent Understanding Evaluation) was modified to measure both consent understanding and satisfaction. Data collection will be complete by April 2019. Analysis will be complete by June, with methods and key findings ready to share for October.

1:00 pm-2:00 pm | Location: Room 304-305

The Ethics of Harm Research with Nonhuman Animals

Anne Barnhill, PhD, Jake Earl, PhD, David Wendler, PhD

Over the past several decades, conversation and collaboration among bioethicists, scientists, and policy makers have led to substantial improvements in the well-being of nonhuman animal subjects in biomedical research. While this progress is commendable, there are no regulations that limit the nature or amount of harm that researchers may impose on nonhuman animal subjects. Should there be any limits on the sorts of harm that nonhuman animal subjects suffer, and if so, what should those limits be? Each of the three panelists offers a distinctive perspective on the justifiability of imposing serious harms on nonhuman animal subjects, which together have significant ethical and policy implications for the conduct of biomedical research. The first panelist will set the stage by surveying the ethical issues raised by infection challenge trials with nonhuman primates. These studies are an excellent test case in that they impose serious harms on cognitively sophisticated animals while providing invaluable information for fighting disease in humans. The second panelist will argue that there are no harms that in principle cannot permissibly be imposed on most nonhuman animals, including most nonhuman primates. This is because unlike most humans, most nonhuman animals can be fully compensated for any harms they might suffer in research. The third panelist will argue that there are some harmful experiences that are so intrinsically bad that they cannot be fully compensated, and therefore the permissibility of harming nonhuman animal subjects in biomedical research will depend on answers to difficult questions about the nature and value of suffering.

1:00 pm – 2:00 pm | Location: Room 321

Disparities in Access to Fertility Care in the United States: Ethical Considerations for Equitable Solutions

Margot Kelly-Hedrick, MBE

There are significant disparities in access to fertility services in the United States. These disparities exist along lines of race, ethnicity, education, income, geographic location, marital status, gender identity, sexual orientation and comorbid conditions (e.g., HIV, Hepatitis C). In this paper, I will argue that these inequalities represent injustices and therefore demand rectification. The disparities in access to care exist for certain groups with shared characteristics and these groups are overall socially and historically disadvantaged.
However, proposed solutions will also raise ethical issues that require careful consideration. For example, passing a policy that mandates insurance coverage of in vitro fertilization raises questions about eligibility, resource allocation, distributive justice and limitations on which reproductive technologies ought to be covered. Such a policy also fails to address barriers other than cost, such as geographic location, which may perpetuate existing disparities. Given that barriers to care include financial, geographical, and sociocultural factors, I will argue for the necessity of multifaceted solutions. Ultimately, my investigation reveals that proposed solutions to reduce disparities in access to fertility care raise ethical issues of their own. These issues are not reasons for inaction, but rather ought to be carefully considered when evaluating policy solutions. I will conclude with recommendations for mitigating ethical concerns that arise from policies that aim to address disparities in access to fertility care in the United States.

2:15 pm-3:45 pm | Location: Room 317-318

The Hastings Center 2019 Henry Beecher Award Session

Ruth Faden, PhD, MPH

Ruth Faden, PhD, MPH, Philip Franklin Wagley Professor of Bioethics, Johns Hopkins University is the 2019 recipient of The Beecher Award for Lifetime Achievement, which is The Hastings Center’s most prestigious award for life time achievement. Founder of the Johns Hopkins Berman Institute of Bioethics, Dr. Faden’s work has profoundly influenced innumerable aspects of our field and, perhaps more importantly, helped to shape public policy on some of the nation’s most pressing issues: from HIV testing of pregnant women to food and agriculture policy, and many aspects of science policy, including stem cell and embryo research. She has also powerfully critiqued the prevailing research ethics paradigm in the United States, encouraging major shifts in how we think about the oversight of comparative effectiveness research. In 1994-5, she chaired the United States Advisory Committee on Human Radiation Experiments, which issued a report President Bill Clinton said “should be engraved in our national memory.” In her latest book, Structural Injustice: Power, Advantage, and Human Rights (September 2019, Oxford University Press), Dr. Faden and co-author Madison Powers build on their longstanding call for bioethics to expand its understanding of justice to put forward a groundbreaking theory of social injustice, more broadly. Their theory forges links between human rights and fairness norms and is built to fit a real-world characterized by deprivation, human rights violations, disadvantage, and unfair power relations, both within and across nations. This session will also include presentation of the inaugural David Roscoe Early Career Essay Award. Through this award, which includes a $2,000 prize, The Hastings Center aims to identify and celebrate early-career post-docs and junior faculty for excellence in a published paper that has brought fresh analysis to the social and ethical implications of advances in science and technology. This year’s award winner will be named for the first time at this event. The session will include introductory comments by Mildred Solomon, president of The Hastings Center, who will then interview Professor Faden, in a wide-ranging discussion of her reflections on her career, the major issues she has addressed, and where she would like to see the field going in the future. David Roscoe, the former long-time chair of The Hastings Center, and now chair of its Advisory Committee, will present the Roscoe Essay Award and its recipient will make brief remarks. There will be plenty of time for questions from the audience.

2:15 pm-3:45 pm | Location: Room 310-311

Integrating Procedural and Substantive Values to Assess the Ethics of Process in the Healthcare Priority Setting

Michael J. DiStefano, MBE

High quality universal health coverage is an increasingly important policy objective for many countries, especially low- and middle-income countries. While health care demand may be infinite, resources for health are finite. Health care priority-setting is thus inescapable, leaving countries with difficult choices regarding what services will be covered by publicly funded health systems. In discussions of the ethics of health care priority-setting, two questions dominate: 1) what substantive criteria ought to inform priority-setting decisions, and 2) what processes ought to guide priority-setting? These questions are typically explored independently. For instance, Accountability for Reasonableness – the dominant account of process – was developed to achieve fair and legitimate priority-setting decisions independent of the substantive criteria chosen to inform those decisions. I defend a novel approach for assessing the ethics of process in health care priority-setting that integrates procedural and substantive ethics considerations to address key critiques of and expand on Accountability for Reasonableness. I show how this novel approach provides better guidance for adapting to specific national contexts and gives much needed attention to values beyond fairness and legitimacy. I also discuss novel benefits of pursuing parallel and mutually coherent – rather than independent – substantive and procedural ethics frameworks for health care priority-setting. First, substantive values beyond fairness such as respect and solidarity may provide additional or stronger justification for the selection and design of process elements. Second, process elements may help decision-makers properly apply a substantive value – such as equity – when assessing an intervention for coverage.

4:00 pm-5:00 pm | Location: Room 302

A Drama of Resilience and Remembrance: Reflecting on Life, Loss, and Liminality

Lynn Bush PhD, MS, MA, Bob Truog MD, MA, Christine Mitchell RN, MS, MTS, FAAN, Cheryl Lew, MD, MSEd, MSBioethics, FAAP, Karen Rothenberg, JD, MPA, Ben Wilfond, MD

Karen Rothenberg Photo

In remembrance of the Tree of Life tragedy our host city experienced and the extraordinary resilience demonstrated in the aftermath of such trauma and loss, a new dramatic vignette-play provides a stage for the ASBH community to explore the conference’s thematic concepts in the symbolic context of a vastly different “tree of life” scenario. Set in a pediatric hospital, the drama spotlights life, loss, and liminality surrounding some ethically controversial cutting-edge technologies for which Pittsburgh and the geographically diverse panelists’/actors’ medical centers are among the field’s leaders, including regenerative and gene therapies for rare diseases as well as “elective” organ transplantation to improve quality of life and experimental fetal therapies. Utilizing dramatic narrative-vignette pedagogy, the twenty minute play stimulates interprofessional dialogue among ASBH bioethics and humanities-scholars about ethical dilemmas and psychosocial challenges raised by the characters. The session will critically examine complex issues facing our multicultural society as we implement these technologies and address concepts of normalcy and illness; decision-making evoking hope and grief; along with concerns about health disparities, justice, and equity in access to limited resources, including consideration for the disability community. Following the play, panelists (PhD; RN; MDs; all experienced in creative educational approaches) will present their varying perspectives, and actively engage the actors and audience in 40 minutes of robust discussion reflecting on the ethical justifications and policy implications of therapeutic boundaries when the individuals are vulnerable, the resources are limited, the disorders are rare, the evidence is not clear, and the treatments are not trivial. [Actor-panelists include: Lynn Bush, Bob Truog, Christine Mitchell, Cheryl Lew, Karen Rothenberg, Ben Wilfond].

4:00 pm-5:00 pm | Location: Room 316

The U.S. opioid epidemic has led to 3.5-fold increased incidence of hepatitis C virus (HCV) over a decade, the majority of new infections going clinically undetected. Young adults are disproportionately affected, including pregnant women, and perinatal transmission affects 6% of HCV-exposed infants. The Centers for Disease Control and Prevention and American College of Obstetricians and Gynecologists currently recommend risk-stratified HCV screening during pregnancy, primarily basing testing on injection drug use or sexually transmitted infection risk. We review ethical considerations for risk-stratified vs. universal screening and argue that a universal screening approach would both reduce stigma related to sexual and substance use behavior and promote long-term health goals of prenatal care. First, we discuss our national survey of obstetricians, revealing that concerns over potential missed cases due to underreporting has led to use of proxy screening criteria such as “late to prenatal care,” a practice that may reinforce biases against already vulnerable, marginalized groups. Second, the traditional position against HCV screening in pregnancy relies on assumptions that: (1) identifying women and at-risk infants to follow postpartum is not sufficiently worthwhile; and (2) there is no acceptable treatment in pregnancy. However, existence of curative direct-acting antivirals (DAAs) disproves (1) and therefore fails to capitalize on routine prenatal testing to reinforce the long-term health mission of prenatal care. Further, ineffectiveness of current postpartum maternal/infant follow-up for identified cases emphasizes the urgency of research on (2), which would cure women and prevent perinatal transmissions which primarily occur at delivery, modeling on successes with HIV.

4:00 pm-5:00 pm | Location: Room 303

Photo of Dr. Shannon Barnett, M.D.
Our nation demands that social services workers protect and nurture every child placed in foster care. Unfortunately, these workers encounter enormous obstacles that thwart their ability to foster the development of autonomy in these youth. A tragedy suffered by a foster care youth creates severe consequences for the foster care agency charged with protecting that youth. Scathing newspaper headlines, intrusive investigations, and costly lawsuits often follow such tragedies. Sometimes these negative responses spark positive changes. However, there may be unanticipated negative consequences if social service agencies adopt polices focused solely on short-term safety in an attempt to avoid the public humiliation and high financial cost of a high profile tragedy. Many such policies become overly paternalistic and risk stunting the development of autonomy in foster care youth. The long-term consequence to restrictive interventions is mostly unknown, although studies do show that youth who age out of foster care have difficulties throughout adulthood securing housing, food, and employment, which may be proxies for poorly developed autonomy. This session will lead participants through the literature concerning the development of autonomy as it relates to youth in foster care. Several case examples will highlight the need to establish interventions that cultivate the development of autonomy in foster care youth. Discussion will include therapeutic techniques that might facilitate the development of autonomy such as validation, teaching mindfulness, and offering more choices when appropriate. Participants will be encouraged to share ideas based on their unique experiences.

–Friday, October 25–

Concurrent Sessions

8:00 – 9:00 am | Location: Room 306-307 

“Because It’s My Child and I Want to Know”: A Survey of Pregnant Women’s Views on the Utility of Ultrasound Screening for Fetal Anomalies

Margot Kelly-Hedrick, MBE, Marielle S. Gross, MD, MBE

Screening ultrasounds are routinely performed during pregnancy, primarily to diagnose major fetal anomalies that may influence women’s decision to have an abortion. As ultrasounds have grown more sophisticated, women are also receiving more detailed findings with variable clinical significance. Meanwhile, some women undergoing screening ultrasounds may not consider abortion regardless of findings, whereas others may find their access to abortion increasingly limited. Little is known about how women view the utility of prenatal anomaly screens.
We surveyed 286 pregnant women immediately before scheduled ultrasounds at an academic tertiary care center. Quantitative and qualitative questions explored views surrounding ultrasound results and abortion for fetal anomalies. Almost all women wanted to know if there were abnormal ultrasound findings; thematic analysis of reasons included being prepared, valuing awareness, and the importance of results for clinical decision-making. Women reported both general (e.g., baby’s health) and specific worries (e.g., Down syndrome) about the upcoming test. About half would consider abortion for anomalies; most focused on fetal prognosis and a minority discussed maternal considerations. Those who would not consider an abortion were most likely to cite personal or religious reasons. In this population, white women were significantly more likely than black women to consider an abortion for fetal anomalies.
These findings highlight women’s perceptions of prenatal ultrasounds not only as informing clinical decision-making – either for abortion or interventions for fetal benefit – but also as an inherently valuable source of information and preparedness. In closing, we discuss implications these findings may have for clinical practice.

8:00 – 9:00 am | Location: Room 315

Ethical Challenges Facing Healthcare Workers in Settings of Extreme Violence

Matthew DeCamp, MD PhD; Grant Broussard, MSPH; Courtland Robinson, PhD; Leonard S. Rubenstein, JD

Screening ultrasounds are routinely performed during pregnancy, primarily to diagnose major fetal anomalies that may influence women’s decision to have an abortion. As ultrasounds have grown more sophisticated, women are also receiving more detailed findings with variable clinical significance. Meanwhile, some women undergoing screening ultrasounds may not consider abortion regardless of findings, whereas others may find their access to abortion increasingly limited. Little is known about how women view the utility of prenatal anomaly screens.
We surveyed 286 pregnant women immediately before scheduled ultrasounds at an academic tertiary care center. Quantitative and qualitative questions explored views surrounding ultrasound results and abortion for fetal anomalies. Almost all women wanted to know if there were abnormal ultrasound findings; thematic analysis of reasons included being prepared, valuing awareness, and the importance of results for clinical decision-making. Women reported both general (e.g., baby’s health) and specific worries (e.g., Down syndrome) about the upcoming test. About half would consider abortion for anomalies; most focused on fetal prognosis and a minority discussed maternal considerations. Those who would not consider an abortion were most likely to cite personal or religious reasons. In this population, white women were significantly more likely than black women to consider an abortion for fetal anomalies.
These findings highlight women’s perceptions of prenatal ultrasounds not only as informing clinical decision-making – either for abortion or interventions for fetal benefit – but also as an inherently valuable source of information and preparedness. In closing, we discuss implications these findings may have for clinical practice.

11:00 am – 12:00 pm | Location: Room 304-305

Global Health Justice and Governance

Anne Barnhill, PhD, Matthew McCoy, PhD, MA, MS, Jennifer Prah Ruger, PhD, MSc, MA, MSL, Eric Juengst, PhD, Danielle Wenner, PhD, Alex J. London, PhD

This panel will bring together four panelists around the common theme of global heath justice and governance comparing and contrasting perspectives from law and governance, political theory and public policy, global public health ethics and policy, and global health justice and governance, commenting on the recently published book from Oxford University Press on this topic. In a world beset by serious health disparities, by dangerous contagions that can circle the globe in hours, and by a confusion of health actors and systems, humankind needs a new vision, a new architecture, new coordination among renewed systems to ensure health for all. Global Health Justice and Governance lays out the critical problems facing the world today and offers a theory of justice and governance as a way to resolve these seemingly intractable issues. Panelists in this session will offer various perspectives on issues around this common theme of global health justice and governance, such as domestic and international health law and public health law, public preferences and debate about health, ethical issues related to resource allocation and policy, ethics of global public health and disease prevention in diverse societies, political theory and public and private institutions and organizations.

–Saturday, October 26–

Concurrent Sessions

8:00 – 9:00 am | Location: Room 309

Distrust Due to Injustice: How Should Health Pactitioners Respond?

Justin Bernstein, PhD, Joseph Ali, JD

Bi-directional trust is essential to the effective practice of medicine, research and public health globally. What influences individual and collective understanding and ability to maintain trust is interesting in its own right. In this panel, we wish to consider the moral and political significance of distrust in cases where patients and populations have been impacted by historical or ongoing abuses of trust. We will focus on two concrete cases to illustrate the nature of “distrust due to injustice” in public health and implications for response. The first case will illustrate the effect of distrust due to injustice on the collection and storage of health-related information to support development of population estimates of burdens of disease in low-resource countries. The second will reflect on vaccine hesitancy amongst some African Americans due to historical and ongoing betrayals of trust in the medical context. In such cases, we wish to consider not only what sorts of efforts ought to be made to mitigate the relevant form of distrust, but also what sorts of obligations of justice arise in light of this distrust, longer-term steps that ought to be undertaken to fulfill these obligations, as well as how these obligations should shape the relationship between patient and health worker, citizen, and state. We intend to incorporate perspectives from ethics, political philosophy, and public health in engaging with these questions.

1:15 pm-2:45 pm | Location: Room 306-307

Bioethics Book Club: Treating Pain During North America’s Opioid Epidemic

Travis N. Rieder, PhD, Anita Ho, PhD, MPH, Daniel Z. Buchman, PhD, MSW

The goal of this panel is to bring a “book club” feel to ASBH, encouraging broad participation while ensuring rigorous scholarly commentary. The subject of the panel will be a new book (out summer 2019) on the ethics of opioid use in pain management against the backdrop of North America’s opioid crisis. The central question of the book is: what does responsible use of this medication look like, given its role in today’s opioid overdose crisis? Intended to reach a broader audience, the text is written by a bioethics scholar to bring crucial bioethics reasoning to the general public. The author (Panelist 1) will open the discussion with a 15-minute précis before turning it over to the other main discussants. They will then provide 15-minute commentaries on themes from the book, with Panelist 2 exploring the role that stigma plays in both pain and addiction medicine and Panelist 3 focusing on the use of shared decision making in contexts of uncertainty. To help promote audience engagement, we propose to use the ASBH listserve at the end of the summer to announce the Book Club and a call for short (5 minute), prepared commentaries on the book. With the remaining 40 minutes after the prepared portion of the panel, we will invite audience members selected from this call to deliver their prepared comments, which may include questions or challenges for any of the three panelists, after which we will take question from the rest of the audience.

1:15 pm-2:45 pm | Location: Room 316

Christian Morales, MA

Addressing health disparities is a policy priority in the United States. In addition to prioritizing disparities between gender, racial, and ethnic groups, U.S. policymakers and researchers also prioritize disparities related to disability status. Although great efforts have been directed towards a better understanding of health disparities over the past several decades, some have lamented that this progress has been slowed by the lack of shared conceptual terminology. The attempt to standardize health disparities research terminology, however, is complicated by the normative assumptions underpinning and motivating all efforts to measure and address health disparities. This presentation will consider the unique ways these complications manifest in the context of disability-related disparities. After introducing a distinction between health differences, health disparities, and health inequities, it will describe some of the ethical justifications for caring about health disparities in the first place. Disability status is a morally suspect class in the context of American society and history. Thus, it warrants attention from health disparities researchers. Yet, the complicated relationship between disability and health raises unique difficulties for the measurement of disability-related health disparities. These difficulties are further complicated by the lack of consensus over what justice requires us to provide to people with disabilities. As research increasingly focuses on disability-related disparities, these difficulties will need to be acknowledged and addressed.

1:15 pm–2:45 pm | Location: Room 302

Hyde and Go Seek Funding: Resource Allocation by Grassroots Abortion Funds

Ariella Messing, PhD Candidate

Abortion is the only medical procedure that the federal government is prohibited from funding and that the Affordable Care Act explicitly permits states to ban health insurers from covering. The compounded effects of federal and state policies restricting insurance coverage of abortion and regulating the provision of abortion care have created significant financial obstacles to the constitutionally protected right to abortion; low-income women are often unable to access abortion care. In response, communities have created abortion funds, locally-run grassroots organizations that provide financial and logistical assistance to people who need help accessing abortion care. Over 70 autonomous funds have developed organically in response to their local environments; while all funds may share the same goals, their priorities and approaches often differ. This exploratory study describes the variation in abortion funds and examines the ethical values and principles that drive organizational decisions. Data was collected using in-depth semi-structured interviews with a purposive sample of 33 abortion fund volunteers and staff at 26 abortions funds across the United States. Topics covered in the interviews include the fundraising process, the values that guide fund allocation decision-making in the context of scarcity, and case management structures, among other process and organizational decisions and rationales. This presentation examines the themes that arose across funds in different geographical and political contexts and the ethical implications of relying on volunteer-based grassroots funding for the provision of a basic health care service.

Reproductive Injustice at the Border

Ariella Messing, PhD Candidate, Rachel E. Fabi, PhD; Joanne Rosen, JD

Recent news reports from the U.S.-Mexico border have detailed alarming stories of public health and ethical violations by the current administration: the deaths of immigrant children in U.S. custody; unaccompanied minors prevented from accessing legal and safe abortions; stillbirths among pregnant detainees; infants torn from their mothers by Customs and Border Protection agents. These stories are often reported in isolation, painting a picture of individual incidents of abuse, or of standalone policies. In this presentation, we examine the recent changes in immigration policies that have systematized this mistreatment, including restrictions on abortion access, unsafe treatment of pregnant immigrants, and the separation of families in immigration detention. When considered through a traditional reproductive rights framework, the Trump administration’s “pro-life” or “pro-family” approach to undocumented minors who seek to terminate their pregnancies may seem at odds with attempts to deny appropriate prenatal care to undocumented adults who wish to continue their pregnancies or with the practice of separating families at the border.
In this presentation, we introduce the Reproductive Justice framework and then demonstrate how these policies and practices violate all three primary tenets of Reproductive Justice: the right to have children, the right not have children, and the right to parent children in safe and secure environments. We argue that when analyzed within this conceptual framework, these policies can be seen as components of a single, targeted strategy to control the reproductive autonomy of vulnerable immigrants.

3:00 pm- 4:00 pm | Location: West Atrium

Against Principled Thresholds: A Conventionalist Defense of Abortion

Justin Bernstein, PhD

There is a moral presumption against killing an entity with full moral status (FMS). Those opposed to abortion often object that defenses of the moral permissibility of abortion cannot identify a principled threshold at which point fetuses acquire FMS. While some attempt to avoid this conclusion or even bite bullets in response, I offer a different reply: defenders of the moral permissibility of abortion should embrace the claim that there isn’t a principled threshold for FMS. My argument for this claim turns on the observation that in some contexts, the difficulty in identifying principled thresholds for some to have rights against others is evidence that, at the margins, there are no principled thresholds for the possession of these rights. Instead, such thresholds have to be established conventionally or through law. I illustrate this point by considering difficulties in identifying thresholds for property rights, difficulties that count in favor of the claim that boundaries of property rights have to be defined conventionally or legally. Defenders of the moral permissibility of abortion should take a similar tack. Questions about when some entity acquires FMS is a question about boundaries, albeit concerning rights that accompany FMS rather than rights that accompany ownership. The difficulty in identifying boundaries for FMS is evidence that there is no principled threshold for FMS. Instead, the boundaries for FMS have to be established conventionally or legally. Accordingly, it is unconvincing abortion is impermissible on the grounds that liberals cannot identify a principled threshold for full moral status.

4:15 pm-5:45 pm | Location: Room 304-305

Making Decisions with Parents about Chronic Mechanical Ventilation for their Children: Are We Helping or Harming the Dialogue?

Nicholas A. Jabre, MD, MS; Benjamin Wilfond, MD; Laura Sterni, MD; Renee Boss, MD, MHS

The decision to initiate or forgo chronic mechanical ventilation in a child with prolonged respiratory failure is complex and profound. Clinicians and bioethicists may struggle to weigh the implications of each choice, especially when death is a possible outcome. Guidance toward initiating chronic mechanical ventilation places families without adequate supports at risk of financial strain, social isolation, or psychological distress. Alternatively, guidance toward withholding ventilation risks alienating families who are singularly focused on their child’s survival. Deepening our understanding of how parents perceive interactions with clinicians while deliberating chronic mechanical ventilation could help us engage them in a more personalized manner that better addresses their individual goals. We conducted a multi-center, qualitative study examining parents’ experiences of decision-making surrounding chronic mechanical ventilation. We interviewed 40 parents across three regions in the United States from a variety of socioeconomic and familial backgrounds who made a decision to either initiate or forgo chronic mechanical ventilation for their child within the past three years. Here, we report the experiences of those parents and whether their interactions with clinicians during the deliberation process were perceived as helpful or harmful. Preliminary results show that parents’ individual values and viewpoints regarding life with mechanical ventilation heavily shape their approach to this high-stakes decision. Healthcare professionals should practice intentional curiosity about the unique attitudes and perspectives of parents in order to provide quality guidance that is both patient and family-centered.

–Sunday, October 27–

Concurrent Sessions

8:00 am-9:00 am | Location: Room 310-311

The Ethical, Legal, and Social Implications of Vaccinomics in the United States

Jennifer E. Gerber, MSc; Janesse Brewer, MPA; Andrea Sutherland, MD, MSc, MPH; Rupali J. Limaye, PhD, MPH, MA; Gail Geller, ScD, MHS; Jeff P. Kahn, PhD, MPH; Daniel A. Salmon, PhD, MPH

objectives: Vaccinomics may use genomics to make vaccines safer and more effective, increasing resilience to vaccine preventable infections. Public values around the ethical, legal, and social implications (ELSI) of vaccinomics were explored. methods: Adults ≥18 years-old attended discussion groups in Boulder, CO and Baltimore, MD in 2018. 95 participants (64% female) were recruited through community organizations and schools, approximating the sociodemographic distribution of each city. After a short animation introduced vaccinomics, participants were randomly assigned to 1 of 7 nested discussion groups. results: Participants generally supported the use of genomics to enhance the safety and effectiveness of vaccines. Ethical issues regarding vaccinomics included privacy/confidentiality, discrimination based on genetic information, prevention of adverse reactions, and justice. Vaccinomics-related ELSI concerns varied by age and trust in industry, government, medicine, and science. Fear of increased health insurance rates or losing coverage due to genetic information discovered through vaccinomics was higher among older versus younger participants. Participants trust government to implement vaccinomics more than industry. Participants who experienced or witnessed an adverse event following immunization (“remembrance”) expressed greater interest in vaccinomics’ potential to personalize vaccines. Participants in both cities recalled historical cases of African Americans’ rights and medical research ethics being violated. They worried vaccinomics would not be applied in ways that benefit vulnerable populations, contributing to stigmatization of marginalized communities. conclusion: These findings are informing the development of a nationwide online survey of vaccinomics-related ELSI concerns and support for personalized vaccines and schedules, overall and by level of vaccine confidence, among U.S. adults.

11:00 am-12:30 pm | Location: Room 320

Disrespectful Language in Prenatal Records

Marielle S. Gross, MD, MBE; Mary Catherine Beach, MD, MPH

Language within medical records may reflect clinicians’ biases and convey stigma about patients from one clinician to another. Women may be especially vulnerable to biases and judgment from clinicians during pregnancy, a time of frequent healthcare engagement about morally-fraught reproductive health. We conducted qualitative linguistic analysis of the history and physical (H&P) from 100 randomly selected women admitted for delivery at our academic center in 2017 to characterize language in prenatal records that may convey disrespect for pregnant women.
With thematic analysis, we identified three types of disrespect: objectifying women’s bodies, testimonial injustice, and signaling the “bad mother.” Women’s bodies are objectified by gratuitous, inappropriately intimate details (‘multiple gushes soaking her underwear and trickling down her leg’). Testimonial injustice occurs when subjective experiences, especially of pain, are trivialized and discredited by juxtaposing patient testimony with “objective data” (‘patient reports unbearable contractions, but cervix remains unchanged.’) Finally, clinicians evoke the “bad mother” by highlighting nonadherence (‘only seen in clinic once’ or ‘but declines genetic screening’), questioning judgment (‘aware of⋯increased risk of maternal and fetal morbidity and mortality, still desires trial of labor’), and implying poor self-care (‘patient has no idea when last pap smear was done’).
Prenatal records manifest disrespect for, and often insidiously mock, pregnant women. We discuss textual cues that may help identify disrespectful language, and potential strategies for preventing healthcare providers from codifying and propagating prejudice.


The 13th Annual Hopkins General Internal Medicine Housestaff Research Awards National Competition

The Johns Hopkins University Division of General Internal Medicine invites you to submit your research abstract to:

The 13th Annual Hopkins GIM Housestaff Research Awards National Competition

Application Deadline: Monday, September 10, 2018

Hopkins GIM offers 6 awards to recognize outstanding house officers who have the potential to become leaders in GIM-related research in:

  • Bioethics
  • Medical education
  • Clinical epidemiology and prevention
  • Health services and outcomes research
  • Behavioral medicine and health disparities
  • Population health and health system transformation
  • HIV-related research

Awards carry a cash prize of $500 each and an invitation to present your winning abstract to the Hopkins GIM faculty at a special divisional grand rounds on December 7, 2018. Travel and lodging in Baltimore will be covered.

Enter the competition by electronically submitting:

  • The application form including statement of interest
  • Your abstract summarizing a research project
  • Two letters of recommendation

All award application forms and details of the competition can be found at

Please note:  Due to funding restrictions on federal grants related to the Awards Program, applicants must be citizens or noncitizen nationals of the United States or admitted for permanent residence by the time the awards are presented.

Ruth Faden receives 2017 Adam Yarmolinsky Medal from the National Academy of Medicine

Johns Hopkins Berman Institute of Bioethics Founder, Ruth Faden received the Adam Yarmolinsky Medal at a ceremony on Monday, October 16, during the 2017 annual meeting of the NAM.

The Adam Yarmolinsky Medal, awarded to an NAM member from a discipline outside the health and medical sciences, honors distinguished service and contributions to the mission of the National Academy of Medicine.

“Faden, a bioethicist who has shared her expertise as a member of many National Academies’ committees since the late 1980s, is an oustanding scholar, teacher, and citizen, whose contributions to the NAM and the National Academies have been extensive and significant. In her work for the National Academies and Johns Hopkins University, Faden continues to set the agenda for emerging issues in bioethics and to prepare the next generation of scholars”, NAM. (Read an interview with Ruth Faden)

Dr. Faden was the Berman Institute’s Director from 1995 until 2016, and the inaugural Andreas C. Dracopoulos Director (2014-2016). Dr. Faden was, and is currently, the inaugural Philip Franklin Wagley Professor of Biomedical Ethics. In the twenty years in which Dr. Faden led the Institute, she transformed what was an informal interest group of Hopkins faculty into one of the leading and largest bioethics programs in the world.

Dr. Faden’s current research focuses on global justice theory and on national and global challenges in food and agriculture, learning health care systems, health systems design and priority setting, and access to the benefits of global investments in biomedical research. Dr. Faden also works on ethical challenges in biomedical science, with a particular focus on women’s health.

The Annual Meeting also included the formal induction of Berman Institute Director, Jeffrey Kahn, into the NAM as a member of the class of 2016.

The BI at ASBH 2017

The Berman Institute will be well represented at the 19th annual meeting of the American Society for Bioethics and Humanities (ASBH), as a group of faculty, staff and trainees are headed to Kansas City, MO, October 19 – 22, 2017.

Preview our diverse presentations (full program available online), and plan a visit to our booth (4) in the ASBH exhibit hall replete with BI swag.

You can also follow us on Twitter: #ASBH17, with our @bermaninstitute, @aregenberg@kahnethx@tnrethx, @govindpersad@texaskiddoc@fabioethics, @zackbergerMDPhD, @Pete_Young_ , and more.


–Thursday, October 19–

Concurrent Sessions

2:45 – 3:45 pm
Location: Chicago A
Rescuing the Child, but Abandoning the Family: Exploring Our Moral Obligation to Support Families of Medically Complex Children
Emily Hahn, MD, Travis Rieder, PhD, Rebecca Seltzer, MD

With advances in critical care medicine, a growing number of children are surviving once fatal conditions, such as severe prematurity, genetic syndromes, and congenital anomalies. Being able to rescue these children often comes at major costs–financial, emotional, and physical. Many of these children have prolonged and recurrent hospitalizations, require multiple medications, and are technology dependent. For those fortunate enough to be discharged home, the intensive home care needs place significant burden on the families. Caregiver parents spend significant time and money providing home care needs. They experience exhaustion, stress, anxiety, burnout, and financial strain. Appropriate supports and resources, such as home nursing, respite, and care coordination, are inadequate or altogether lacking. If we value saving children’s lives at such costs, then why do we allow families to struggle without the necessary supports to successfully care for the very child that we saved? This places both the family and child in a harmful situation. Our first panelist, a neonatologist and palliative care fellow, will present a case of a critically ill infant and discuss what is known about the family experience of chronically critically ill children. Our second panelist, a primary care pediatrician and bioethics research fellow, will continue the case from the outpatient perspective and discuss the challenges faced by families who lack appropriate supports. The third panelist, a philosopher and bioethics scholar, will argue that our current rescue practices concerning such children imply the existence of an obligation to aid families in continuing to care for such children.

4:00–5:00 pm
Location: Benton A
Autonomy and Moral Duty Paper Session: Do Prisoners Have Abortion Rights? An Examination of the Legal and Ethical Questions
Ariella Messing

This paper explores the moral and legal rights to access abortion care while incarcerated and argues that it is both unconstitutional and unjust for jails and prisons to deny female inmates access to abortion services. In the United States, there are currently 295,000 women incarcerated in jail, state prison, or federal prison, are all subject to different abortion policies, even within the same state. Federal courts have split on whether inmates have the right to elective (non-therapeutic) abortion, and if so, on what grounds. This paper reviews these decisions in light of the 1980 Supreme Court case Harris v. McRae which in upholding the Hyde Amendment’s ban on the use of federal funds for abortion care, explained that while Roe v. Wade established that the right to privacy encompasses a woman’s decision to terminate a pregnancy without government interference previability, it does not entitle her to any public enabling of that decision. The implications of this decision are complicated for those who are incarcerated, because inmates are not free from interference by the state. In order for an inmate to access abortion care, she must be enabled by the State; it is physically impossible for a pregnant inmate to exercise her right to choose without the State’s assistance. To address this legal and ethical dilemma, this paper considers the two legal tests applied by four Circuit courts, examines the philosophical literature on negative and positive rights, and proposes two new arguments in favor of abortion rights for the incarcerated.

4:00 – 5:00 pm
Location: Atlanta A
A New Framework for Animal Research Ethics
Tom Beauchamp, PhD, David DeGrazia, PhD, John Gluck, PhD, Jeffrey Kahn, PhD MPH

Several developments call for a reconstruction of animal research ethics. First, public concerns about animal welfare have increased substantially over time. Second, the scientific study of animal cognition has afforded deeper insight into animals’ needs and capacities. Third, animal ethics, a relatively new scholarly discipline, is growing rapidly. Together these developments challenge traditional assumptions about animals’ moral status and human responsibilities towards animals. Two of us have produced a new framework for animal research ethics, consisting in three principles of social benefit and four principles of animal welfare. The principles grow from three pivotal ideas: (1) Sentient animals have moral status and are not mere tools for human use; (2) The only acceptable justification for harming beings with moral status in research appeals to substantial, otherwise unattainable social benefits (if they exceed anticipated costs and harms); and (3) Any harms to animal subjects must also satisfy certain criteria of animal welfare. These principles are compatible with Russell and Burch’s influential Three Rs (reduction, replacement, and refinement) but call for a much more comprehensive program of animal subjects protection and greater emphasis on demonstrating an expectation of net social benefits. Suggesting the possibility of convergence between the biomedical and animal-protection communities, this framework shows that the socially beneficially involvement of animals in research is compatible with their having decent lives. The first speaker will situate the framework of principles in historical context. The second speaker will present the framework’s content and rationale. The third speaker will critically evaluate the framework.

4:00 – 5:00 pm
Locatin: Empire B
Beyond the Therapeutic Misconception: The Challenges of New Misconceptions About Research
Stephanie Alessi Kraft, JD, Sandra Lee, PhD, Jeremy Sugarman MD, MPH, MA, Kevin Weinfurt, PhD

Comparative effectiveness research and pragmatic clinical trials aim to gain knowledge by conducting systematic research in the context of patients receiving usual clinical care. This approach can present ethical challenges in the form of misconceptions as the assessment of risk and benefit and the approach to informed consent can differ from research that tests new interventions or that is conducted by researchers not providing care to the patient-participants. This interdisciplinary panel will discuss emerging ethical issues related to potential misconceptions about this research approach identified in recent empirical findings and discuss patients’ misunderstandings that seem related to the increasingly blurring boundaries between research and practice. After a brief introductory presentation, the second presentation will discuss the implications of results from a mixed methods study of patients’ views on comparative effectiveness research that point to an ‘investigational misconception,’ arising from the assumption that all research involves testing a new, non-validated intervention. The third presentation will present quantitative data from a nationally representative study of U.S. adults that suggest substantial misunderstandings about the nature of comparative effectiveness studies, arising from confusions with traditional clinical trials of new therapeutics. The final presentation will provide an historical analysis of conceptualizations of misconceptions about research, beginning with the therapeutic misconceptions, and address the ethical implications of emerging misconceptions for comparative effectiveness research and pragmatic clinical trials.

4:00 – 5:00 pm
Location: Van Horn A
Forging a New Paradigm for Public Health Emergency Research that Includes Pregnant Women in the Response: What We Can Learn from HIV, Ebola, and Zika
Ruth Faden PhD, MPH, Carleigh Krubiner, PhD, Anne Lyerly MD, MA

Biomedical research addressing infectious disease epidemics has provided the global health community with critical tools to combat new and reemerging threats, including advances in vaccine science and new therapies. Yet one segment of the population – pregnant women-is consistently left behind, due in part to concerns about the ethical inclusion of pregnant women in biomedical research. While challenges at the intersection of pregnancy and research are not limited to public health emergencies, they bring an extra layer of urgency and complexity with the accelerated pace of research and the close link between the research agenda and the emergency response. Assessing interventions in pregnancy late in product development or post-licensure may leave pregnant women without adequate preventives across multiple epidemic cycles. Moreover, pregnant women may face more severe or different threats from infectious pathogens than non-pregnant individuals that require pregnancy-specific research to address. A new paradigm is needed for emergent infectious disease research that is inclusive of pregnant women’s needs, ensuring that they fairly benefit from the research enterprise. This panel will explore what lessons we can learn from responses to past epidemics in meeting the needs of pregnant women. Drawing on the 35-year history of the HIV response, the 2014 Ebola crisis, and the recent Zika virus epidemics, we will examine how research in pregnancy has advanced, the challenges and gaps that remain, and how the research community can be better prepared to address pregnant women’s needs in future outbreaks.

–Friday, October 20–

Concurrent Sessions

8:00–9:00 am
Location: Benton B
Ethical Challenge, Policy Access, Critical Thinking, and Celebrating Collaboration Flash Session: Centering Health Care and Public Health Policy: Should We Cater to the Middle Class?
Govind Persad, JD, PhD

One value that frequently centers real-world policies, both literally and figuratively, is their effect on the middle class. Both health care and public health policies are frequently defended on the basis that they benefit the middle class or ensure its continuation. But policies that benefit the middle class at the expense of the absolutely disadvantaged raise ethical concerns. This preliminary project examines health care and public health policies that are designed to cater to middle class interests, and considers whether catering to these interests can be ethically justified. Such policies include retiree health care plans that are more generous to middle class earners, subsidies for health insurance that target the middle class, and public health initiatives that focus on conditions that are most prevalent among the middle class. I then examine potential justifications for these policies, including economic efficiency, solidarity, and moral desert. I conclude that while it may be politically appealing to center health policy around the middle class, doing so is difficult to ethically justify.

8:00-9:00 am
Location: Atlanta A
Bioethics & Genomics Center Stage: A Play Explores Ethical Challenges that Throw Medical Centers Off-Center
Lynn Bush, PhD, MS, MA, Christine Mitchell, RN, MS, MTS, FAAN, Karen Rothenberg, JD, MPA, Robert Truog, MD, MA, Rebecca Seltzer, MD

The ethical complexities and implications of comprehensive genomic sequencing in prenatal, neonatal, and pediatric settings take center stage, providing the inspiration and drama for the premiere of a vignette-play. As genomic technologies dive deeper, from before conception to fetuses, newborns, and children, so too does the play, with provocative scenarios centering on dilemmas that throw patients, health care teams, and bioethicists off-center. Our interactive journey to the center of bioethics and humanities begins with a new fictionalized case-based drama grounded in the real world of clinical genomics that is centered on a thorny landscape of ethical, psychological, and policy challenges at medical centers today. The play’s dialogue illuminates the role of bioethicists in helping genetics professionals and other healthcare providers center their focus to critically examine the significance of contextual variation, such as managing uncertainty and balancing diverse perspectives amongst families and inter-professionally. The play sets the stage to enhance reflective ethical consideration and foster lively inter-professional discourse. After the performance, the multidisciplinary presenters and cast of distinguished bioethicist-actors share insights based on their character’s role and their own professional experiences, followed by focus questions to elicit broad audience discussion. Presenters will then engage the audience in further conversation exploring commonalities and distinctions, especially involving the processes of decision-making, informed consent, and return of genomic findings. Lastly, participants will be encouraged to describe their experiences using this creative pedagogical approach elsewhere, both as a teaching tool inter-professionally and for community engagement to facilitate exploration and dialogue of ethical issues.

10:45am – 12:15 pm
Location: Van Horn A
Research Ethics Paper Session 1: Parental Views About Rare Disease Research and Advocacy: Implications for Patient Engagement Programs
Leila Jamal, PhD, MS

Background: Patient advocacy organizations (PAOs) have been involved in all aspects of health research, including recent patient-centered efforts to make research more respectful and relevant to patients. In the rare pediatric disease arena, PAOs are often led by parents of affected children. Little is known about why some parents become involved patient advocacy while others do not, or how parents experience and view patient advocacy and its role in research. Methods: This qualitative study interviewed parents of children with rare diseases about their experiences and views related to patient advocacy and research. Interview transcripts were coded and analyzed thematically using a combined deductive and inductive approach. Results: Thirty-four parents completed interviews. Sixteen held roles in advocacy organizations and 18 did not. Parent advocates became involved in advocacy to cope with their child’s condition or contribute professional skills. Those who were uninvolved in patient advocacy cited their caregiving obligations, a desire for privacy, and negative social dynamics among affected families as reasons. Most parents thought it made sense for researchers to partner with PAOs to engage patients in research but noted limitations of this approach. Conclusion: Not all patients and their families find patient advocacy accessible or helpful, and some parents see limitations to using PAOs as partners for patient engagement in research. These findings should inform the design of patient engagement efforts that aim to make research more relevant and respectful to patients by partnering with patient advocacy organizations.

–Saturday, October 21–

Concurrent Sessions

8:00-9:00 am
Location: Van Horn C
Undocumented Immigrants: Health Care and Moral Limits Paper Session: Provider Perspectives on Prenatal Care for Undocumented Immigrants: A Case Study in Practice and Ethics
Rachel Fabi

In the United States, undocumented immigrants are ineligible for most forms of public health insurance, but 19 states have enacted one of two prenatal policy options that provide undocumented women with pregnancy coverage. One option is an exclusively state-funded Medicaid lookalike program for pregnant women regardless of immigration status, and the second is a State Plan Amendment that extends Children’s Health Insurance Program (CHIP) benefits to the unborn fetus of pregnant immigrants. The remaining 31 states do not provide public insurance, but women can seek care at Federally Qualified Health Centers (FQHCs) on a sliding fee scale. The ethical underpinnings of these policies may influence their implementation across different states, including the experiences of providers. This case study seeks to explore the attitudes and practices of clinical providers and staff who serve undocumented pregnant women in states with different prenatal policies, as well as the ethical tensions they encounter in their professional capacities. Data was collected using in-depth interviews with purposively sampled providers and staff at FQHCs in four states with different prenatal polices (MD, NY, CA, and NE). Interviews covered both the process through which undocumented women actually access prenatal care in practice in each case state and the ethical values at play for the professionals who provide this care. This presentation examines the various themes that arose across and within states, suggesting points of overlap and probing areas of disagreement.

8:00-9:00 am
Location: Van Horn A
Advancing HIV Care and Transplantation: Ethical, Legal, and Social Issues at the Center of HIV+ to HIV+ Solid Organ Transplants
Macey Henderson, JD, PhD, Sarah Rasmussen, Jeremy Sugarman, MD, MPH, MA

The HIV Organ Policy Equity (HOPE) Act was promulgated in 2013, allowing for organ transplants from HIV+ donors (HIV D+) into HIV+ recipients (HIV R+). Such potentially risky transplants aim to improve care for people living with HIV as well as help alleviate the organ shortage crisis more generally. In March 2016, our team performed the first HIV D+/R+ transplants in the United States. We are now leading efforts to develop and implement protocols so that organ procurement organizations and hospitals across the country can perform these novel, potentially life-saving transplants. This panel presentation will explore the challenging ethical, legal, and social issues we have encountered in procuring and transplanting of organs under the HOPE Act. We will describe preliminary data about the acceptability of HIV+ transplantation and motivations for organ donation among people living with HIV and discuss state-level legal barriers should HIV D+/R+ transplants move from their current status as research to clinical practice. This panel will include professionals from different disciplines who are working together to support the ethically appropriate advancement of HIV care and transplantation. The panelists include a physician and bioethicist evaluating and navigating the ethical issues related to HIV D+/R+ organ transplants, an expert in legal epidemiology working to remove state-level legal barriers to these transplants and bring clarification to HIV disclosure laws under HOPE Act research protocols, and a social scientist conducting interviews and surveys with individuals living with HIV about their experiences, attitudes, and perceptions of organ donation and transplantation.

Philosophy Affinity Group Meeting

6:00-7:00 pm
Location: Benton A
Govind Persad, JD, PhD, will give a presentation during the Philosophy Affinity Group Meeting: “Rethinking Financial Risk Protection in Universal Health Coverage.” This presentation was selected as the top presentation by blind review from all submissions to the Philosophy Interest Group’s call for proposals.

–Sunday, October 22–

Concurrent Sessions

8:00-9:00 am
Location: Empire B
Philosophy / History Paper Session 5: The Many Moral Reasons Not to Make New People
Travis Rieder, PhD

Antinatalism, the view that creating a new person is (or tends to be) bad or wrong, seems to be gaining steam. Although still unpopular, in the last decade there has been a significant increase in the number of academic antinatalist arguments. Although there are certainly variations, such arguments tend to defend the claim that each of us is obligated not to procreate for some particular reason. For instance, we are obligated not to procreate, because doing so harms the created child, damages the environment, or fails to respond to the need of an existing orphan.
An interesting feature of the antinatalist landscape is that most antinatalists tend to focus on one, or perhaps two, features of procreation that they find morally problematic. As a result, it may often seem that, if the particular argument being made can be resisted, then the challenge from antinatalism has been successfully defeated. In this talk, I will argue that this comforting thought is misguided. An honest look at all of the morally relevant considerations for and against procreating reveal the striking power of the antinatalist position. By abandoning the quest for an ‘obligation’ not to procreate, and instead arguing that there are many good reasons not to procreate, I suggest it becomes more difficult to feel we have defeated antinatalism entirely. My conclusion of a ‘moderate antinatalism’ is that there is at least a burden of justification on those who defend procreation, and that this burden is likely very serious.

11:00am-12:00 pm
Location: Exhibit Hall B
Deciding Together and Family Experience of Care Paper Session: The Family Experience of Care During a Child’s BMT
Katherine Heinze, PhD

Introduction: Pediatric Blood and Marrow transplantation (BMT) is an intensive treatment that lasts months to years and places physical, emotional, and financial demands on pediatric patients and their family members. Pediatric BMT clinicians strive to provide high-quality care, which includes assisting families to navigate the BMT process. However, despite this commitment, little is known regarding factors that influence the family experience of pediatric BMT.
Methods: The family-as-group method was used to interview pediatric BMT patients and family members following BMT. Inclusion criteria included pediatric BMT patients and family members ? 6 years old, consent/assent to participant, and ability to speak English. A semi-structured interview guide was used to conduct the interviews according to Van Manen’s phenomenological human science approach. Line-by-line coding was used to construct themes. The interviews focused on families’ self-management experiences, and results presented here focus on family descriptions of experiences that lead to frustration or satisfaction.
Results: Thirteen families consented to join the study including 11 mothers, 5 fathers, 4 BMT patients, and 4 siblings. Interviews were conducted in hospital, home, and by phone. Themes included: frustration factors (sub-themes: hospital nuisances; bureaucratic systems; and incomplete communication) and satisfaction aids (sub-themes: simulating normal life; value-based accommodations; and thoughtful care providers).
Conclusions: Understanding how families perceive their pediatric BMT experience is necessary to ensure care alignment between families and clinicians. The themes identified in this study suggest ways in which care may be improved. Future research is needed to study these concepts longitudinally.

11:00am – 12:00 pm
Location: Empire A
Law, Public Health Policy, and Organizational Ethics Paper Session 8: Ethical Sensemaking in Conditions of Uncertainty: An Organizational Ethnography of Morality in a Center of Coordination for Outbreak Surveillance
Angie Boyce, PhD

In public health, ethical decision-making is routinely fraught with scientific complexity and uncertainty (Callahan and Jennings, 2002), and only further ramified in public health emergencies. Prevention-oriented programs involve many challenging moral questions (Faden and Shebaya 2010): defining populations, good health, and good public health practice; weighing statistical and unidentified lives; judging the worth of present versus future health gains; scoping legal restrictions and regulations; and balancing consequentialism with individual rights and social justice. Though the broader landscape of public health ethics is well-established, additional research is needed on the real-time ethics of decision-making about specific situations in their organizational contexts. Drawing from Weick’s (1995) theory of ethical sensemaking (mental model formation in response to an ethical event via scanning and interpreting), I present results from an organizational ethnography of food-borne disease outbreak detection and response in a federal public health agency. The moral sensibility of public health practitioners, I argue, was intimately tied to the broader organization’s form as a center of coordination for the distributed intersectoral work of outbreak surveillance and control. Practitioners collected, made sense of, and stewarded outbreak data, synthesized information as quickly as possible, and moved it through a “chain of trust” (Anderson and Edwards 2010) to take prudent actions and have positive public health impact. That doing the right thing meant doing a good job highlights the fruitfulness of augmenting professional ethics and virtue theory with thick ethnographic description of ethical decision-making under conditions of uncertainty.

11:00 am – 12:00 pm
Location: Van Horn C
Clinical Ethics Paper Session 17: Interprofessionals’ Take on Moral Resilience
Heidi Holtz, PhD

Background: Moral distress is a reality in health care. Healthcare providers face many ethical challenges that stem from the complexity of the health care environment, technological advances, patients with chronic, multi-faceted conditions and the diversity of values that shape patient and family preferences, healthcare professions, and organizational policies and practices. These ethical challenges can lead to pervasive and unrelenting moral distress. Effective strategies to mitigate the detrimental consequences of moral distress are limited. Moral resilience, however, is an emerging concept that leverages resilience concepts and research to specifically focus the moral capacities needed to transform ethical challenges and moral distress from only a negative experience to one of hope and positive forward movement.
Aim: The aim of this qualitative descriptive study was to describe common characteristics and themes of the concept of moral resilience as reported by interprofessional clinicians in healthcare.
Method: Qualitative descriptive methods were used to analyze the definitions of 207 inter-professionals’ description of moral resilience.
Results: A description of characteristics that establish a person’s trait of moral resilience included six categories: personal integrity, relational integrity, buoyancy, self-regulation, self-regard, and moral efficacy. In addition to the categories, qualities and skills that enable one to be morally resilient were described.
Conclusions: Healthcare clinicians and other professionals can use this descriptive study to understand the concept of moral resilience to guide strategies and interventions to cultivate individual capacities that contribute to a culture of ethical practice.