The BI at ASBH 2018

ASBH18-WebBanner

The Berman Institute will be well represented at the 20th annual meeting of the American Society for Bioethics and Humanities (ASBH), as a group of faculty, fellows, and students are headed to Anaheim, Ca, October 18 – 21, 2018.

Preview our diverse presentations (full program available online), and plan a visit to our booth (7) in the ASBH exhibit hall replete with BI swag.

You can also follow us on Twitter: #ASBH18, featuring our @bermaninstitute, @aregenberg@kahnethx@tnrethx@DiStefano_MJ, @FaBioethics and more.

 


Schedule at a Glance:

Thursday, October 18


8 am–Noon
Preconference Sessions
1:15-4:45 pm
Concurrent Sessions
5–6:15 pm
Welcome Plenary Session
6:30–8 pm
Opening Reception with
Exhibits 


Friday, October 19


7–9 am
Continental Breakfast in the
Exhibit Hall
7:30-9 am
Meet-the-Professor Session
8 am–9 am
Concurrent Sessions
9:15–10:15 am
Plenary Session
10:45 am–12:15 pm
Concurrent Sessions

12:15–1:45 pm
Lunch (on your own)
12:45-1:45 pm
Affinity Group Meetings
2–3:30 pm
Concurrent Sessions
3:45–5:15 pm
Annual Members’ Meeting
Award Presentations
President’s Address
5:30–6:30 pm
Reception for New Members
and Students
5:30-7:30 pm
Affinity Group Meetings

Saturday, October 20


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

9:15–10:15 am
Plenary Session
10:30 am–12:00 pm
Concurrent Sessions
12:00–1:30 pm
Lunch (on your own)
2–5:30 pm
Concurrent Sessions
6-8:30 pm
Affinity Group Meetings

Sunday, October 21


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

Full Schedule:


–Thursday, October 18–


Preconference Sessions


8:00 am – 12:00 pm | Location: Monorail ABC | Session 620

Resilience Training: Redress for Clinical Distress

Cynda Hylton Rushton PhD, RN, FAAN; Theresa Drought PhD, RN; Heather Fitzgerald, MS, RN; Anita Tarzian, PhD, RN

“Resilience is not simply bouncing back from stress; it is both recovering and deepening as a consequence of encountering stress in the right way with adequate inner strength” (Wicks & Buck, 2010). One proposed strategy for mitigating the effects of moral distress in health care professionals (HCPs) and allied health students is the cultivation of resilience. Clinical ethics consultants are ideally situated to bring education and expertise to those experiencing (or at risk of developing) moral distress. One important way to start this is by nurturing their own resilience so they can model it to others and avoid burnout themselves. In this workshop, clinical ethics consultants from various backgrounds and locations will present a brief overview of the moral distress literature and its relationship to resilience. Two different approaches to teaching, training, and mentoring resilience in an academic and a health care setting will be presented. Attendees will interact in small groups to share ideas and apply concepts discussed. Lastly, presenters will share one example of how they have nurtured resilience in themselves by developing their own peer support group. This workshop will feature novel methods of engaging the participants, such as pecha kucha (http://www.pechakucha.org).


Concurrent Sessions


1:15 – 2:15 pm | Location: Western | Research & Global Health I

Challenges and Opportunities Faced by Research Ethics Committees Reviewing Clinical Trial Protocols with Pregnant Women: Perspectives of Southern African Stakeholders

Kristen Sullivan, PhD, MSW, MBA; Mary Kasule, PhD, MPH, MSc; Elana Jaffe, BA; Maggie Little, BPhil, PhD; Ruth Faden, PhD, MPH; Anne Drapkin Lyerly, MD, MA

One of the greatest achievements of the HIV research enterprise has been in the prevention of maternal-to-child transmission, largely due to research conducted in Southern Africa. Nonetheless, globally reticence remains about including pregnant women in clinical research; as a result, significant evidence gaps exist about how to safely and effectively treat and prevent maternal HIV during pregnancy. While global biomedical and bioethics communities are increasingly recognizing and advocating for the ethical inclusion of pregnant women in clinical research, the perspectives of expert stakeholders in the HIV research community in Southern Africa on the challenges and opportunities research ethics committees (RECs) face in reviewing these studies have not been explored, though may offer implications for advancing the HIV research agenda in pregnancy. To fill this gap, we conducted interviews with 60 stakeholders in the Southern African HIV research community: 18 in South Africa, 17 in Malawi, and 25 in Botswana, including clinicians, investigators, ethicists, REC chairs and members, and community advisory board members. Many considerations regarding review of research with pregnant women overlapped between these three contexts. Commonly cited challenges to RECs in reviewing/approving studies involving pregnant women included a high burden on RECs, lack of pregnancy-specific expertise, protectionist beliefs around pregnancy that negated consideration of the potential benefits of research participation, and the classification of pregnant women as a vulnerable or a paradigmatically “sick” population. Some respondents expressed a need for further capacity building on these issues and the potential value of greater ethical guidance in this area.


1:15 – 2:15 pm | Location: Castle B-C | Bodies and Robots

Science Fiction, Gene Editing, and the Future of Nature

Rebecca Wilbanks, PhD

This paper argues that science fiction is an underutilized resource for understanding the values that underlie people’s commitments to science and technology. By combining textual analysis, participant observation, and interviews with synthetic biologists and “biohackers,” I found that participants used science fiction to think about the broader implications of their work and to envision the future of biology. Here, I analyze relevant works of science fiction as well as speculative nonfiction by synthetic biologists (including Rudy Rucker’s Ware Tetralogy [1982-2000], Kim Stanley Robinson’s 2312 [2012], and George Church and Ed Regis’s Regenesis [2012]) to reveal the narrative frameworks and affects that structure visions of the future in which the genetic modification of humans and nonhuman nature is significantly featured. My analysis finds while critics and proponents of genetic modification both value the sense that humans are part of a larger natural order, they have different conceptions of what that order consists of, and also adopt different timescales when thinking about the future. Finally, I connect these different conceptions of nature to discussions in environmental ethics that center around Keekok Lee’s notion of “nature-replacing” technologies, in order to show that Lee’s critique of genetic modification rests on a concept of nature that proponents of genetic engineering do not share. I conclude by demonstrating how literature and bioethics can be integrated to move towards a more honest and fruitful public discussion about the role of biotechnology in society.


1:15 – 2:15 pm | Location: Magic Kingdom Ballroom 1 | Session 541

“Doing” Clinical Ethics Consultation: The Interplay of Role, Process, and Responsibility

Lucia Wocial, PhD, RN, FAAN; Stuart Finder, PhD; Paula Goodman-Crews, MSW, LCSW; Joseph A. Carrese, MD, MPH, FACP

While debate continues regarding requirements for doing “good” ethics consultation, there can be little debate that in doing this work ethics consultants may confront personal, professional, and institutional challenges to their own commitments and sense of responsibility. This panel is designed to explore the meaning and limits of responsibility as experienced by ethics consultants in their actual practice of ethics consultation. The panelists, who all serve as ethics consultants but come from diverse backgrounds—nursing, social work, medicine, and philosophy—will engage attendees in thoughtful reflection using a case presentation and discussion on how the local political climate may complicate one’s usual practice of ethics consultation and challenge one’s understanding of the obligations of the ethics consultant. The panel will begin with a case presentation in which the following elements complicated the case: multiple members of the healthcare team, including the ethics consultant knew the patient professionally and had first-hand knowledge of preferences regarding life-sustaining treatment; the attending physician actively opposed the involvement of ethics; the request for assistance was textured by fears of retribution from the attending physician; and concern that the attending physician was advocating for a plan of care inconsistent with the patient’s preferences. Panelists will then offer commentary, exploring issues of moral neutrality and the role of ethics consultation; the status of input provided by the ethics consultant; and whether, under certain conditions, recusal from participation by an ethics consultant in a situation is not merely justifiable but required. The discussion will then be opened to the attendees.


1:15 – 3:30 pm | Location: Disneyland Grand Ballroom | Session 552

Dialoguing with the Stars: Imagining Bioethics with Hollywood Screenwriters

Felicia Cohn, PhD; Rick Loverd; Jeffrey Kahn, PhD, MPH; Gail Geller, ScD, MHS

Narrative science fiction films have arguably become more grounded in reality over the last decade. To what do we owe this apparent effort to fact check and explain fictional worlds that are often developed from wildly implausible comic books? In this session offered by The Science & Entertainment Exchange (The Exchange), screenwriters and scientists will offer a glimpse into the creative process. Storytellers who have brought to life some of our culture’s favorite fictional heroes will discuss how their inspiration from science and technology. When we imagine the future as a culture, what often resonates are images from mainstream media. How are bioethicists most commonly portrayed? How are real dilemmas in medicine, public health, education, and policy fictionalized? What is Hollywood’s role in shaping public attitudes about science and technology and what impact can media have on human health and politics? Do mainstream media makers have a responsibility to educate? How can bioethicists and Hollywood professionals collaborate to engage and change the future? The Exchange is a program of the National Academy of Sciences that inspires and facilitates more science in film and television by introducing entertainment professionals to great science communicators. Since its launch in 2008, The Exchange has facilitated more than 2,300 technical consults on a variety of projects including Avengers: Infinity War, Star Trek: Into the Darkness, Man of Steel, Punisher, Blade Runner, Madam Secretary, Black Panther, and Big Hero Six. Additionally, the program has produced and hosted over 250 live events for mainstream media professionals. This session will provide an opportunity to introduce the work of the Exchange to those in bioethics and medical humanities, making connections that may benefit future entertainment.


2:30 – 3:30 pm | Location: Wilderness | Research & Global Health II

Startup Companies and the Shifting Landscape of the Global Pharmaceutical Industry

Alexis Walker, PhD

From gene therapy for acute lymphoblastic leukemia to the first drug to treat spinal muscular atrophy, the FDA has approved a series of breakthrough medical innovations in recent years carrying price tags of up to three quarters of a million dollars for a course of treatment. In addition to such massively expensive treatments, prices for prescription medication and healthcare as a whole have come under intense public debate, figuring centrally in American electoral politics. But beyond large pharmaceutical companies, prices for drugs and diagnostics arise out of a complex innovation system involving many players, among which startup companies play an increasingly central role. Large pharmaceutical companies have progressively externalized their research functions, focusing on acquiring small companies that have already identified promising drug targets, rather than pursuing this risky research stage within the pharmaceutical company itself. Startup companies now strongly influence the kinds of technologies being pursued and the financial relationships of the biopharmaceutical industry, especially in personalized medicine and genomics—from companies combining artificial intelligence with genomic data to identify new drug targets, to those developing new sequencing technologies for research and clinical contexts. This paper presents an empirical analysis of these shifting dynamics of pharmaceutical development through an examination of the genomics startup industry, based on interviews with key industry stakeholders as well as a systematic analysis of industry publications. The paper demonstrates how companies of varying sizes and specialities position themselves against one another, highlighting how these relationships shape pharmaceutical development and pricing today.


3:45 – 4:45 pm | Location: Western | HIV/AIDS Research

Women’s Views About Participating in HIV Treatment Trials While Pregnant: How Context Shapes Perceptions of Risk

Kristen Sullivan, PhD, MSW, MBA; Maggie Little, BPhil, PhD; Elana Jaffe, BA; Tiwonge Mtande, MSSci; Sappho Gilbert, MPH; Chifundo Zimba, PhD, GCGH, RN, RM; Ruth Faden, PhD, MPH; Anne Drapkin Lyerly, MD, MA

Exclusion of pregnant women from clinical trials of newer antiretroviral (ARV) medications has resulted in limited data on their use in pregnancy. Though some have raised concerns about pregnant women’s willingness to take on uncertain risks of trial participation, little is known about how women living with HIV reason about participation in trials of new ARVs during pregnancy. We conducted seventy semi-structured, in-depth interviews with pregnant or recently pregnant women living with HIV: 35 in the U.S. and 35 in Malawi. Questions explored decision-making around enrollment while pregnant in 3 hypothetical HIV clinical trial vignettes with differing risk/benefit profiles. The majority of women reported willingness to join at least one trial, with a higher proportion of women in Malawi agreeing to enroll as compared to U.S. women. In general, women in the United States were more risk averse, citing concerns about risks to their own health and particularly to the fetus, while women in Malawi were more likely to highlight the potential benefits of a newer, potentially more efficacious and more tolerable ARV for both themselves and their babies. We also identified a diversity of considerations and priorities within countries. These findings highlight the importance of considering how research subjects themselves reason about risk in the context of their lives. They also suggest inter-country differences in risk/benefit assessments that should be taken into consideration in developing an inclusive and responsive approach to advancing the evidence base for pregnant women living with HIV.


–Friday, October 19–


Concurrent Sessions


8:00 – 9:00 am | Location: Wilderness Access to Care & Research

Challenging Medicaid Work Requirements: A Disability Law Dilemma

Christian Morales, MA

At the beginning of 2018, after the Centers for Medicare and Medicaid Services (CMS) announced its willingness to approve Section 1115 Medicaid demonstration waivers that impose work requirements (a.k.a. community engagement) as a condition for eligibility, 10 states submitted waiver applications. These proposed work requirements are expected to result in the loss of health insurance coverage for many who are otherwise eligible, but the administrative challenges and costs associated with complex waiver provisions pose a particular threat to Medicaid beneficiaries with disabilities. Although much turns on how each individual state defines their exemption for people with disabilities, it is not immediately clear whether the ostensible goals of these policy changes contradict or complement existing disability law and the historical goals of the disability rights movement. This presentation will provide a brief historical account of disability law, the disability rights movement, and the shift in priorities from anti-discrimination toward the welfare system. After presenting the tension between universal and targeted approached to securing welfare rights, a dilemma, having important implications for anyone hoping to challenge the proposed Medicaid work requirements through disability law, will be introduced.


10:45 am – 12:15 pm | Location: Mark Twain Environmental Ethics

Modified Mosquitoes in my Backyard? Historical Precedents and Contemporary Approaches to Public Engagement in the Release of GMOs for Public Health Purposes

Rebecca Wilbanks, PhD

This paper reviews recent projects that aim to release genetically modified organisms (GMOs) into the environment in order to control infectious disease, paying particular attention to their public engagement approaches. I place these projects in a longer history of “genetic control” of pests, and analyze the factors that led to the breakdown of research on an earlier mosquito-release project in the 1970s. From 1969-1975, the World Health Organization (WHO) and the Indian Council of Medical Research (ICMR), with support from the US government, carried out collaborative research and field-testing on the genetic control of mosquito populations. The collaboration was prematurely ended after it was criticized in the Indian press and later in Nature. I discuss lessons learned from this incident and find that many of the same contributing factors are at play in contemporary mosquito-release projects. My review of the assumptions and procedures surrounding public engagement in these projects provides a setup to begin addressing these questions: Should communities have a say in whether genetically modified mosquitoes are released in their neighborhoods, and if so, what would an ethical process of community engagement look like? How do notions of consent come into play and how might they need to be altered? How can we integrate insights from environmental ethics, public health ethics, and biomedical ethics to take into account all aspects of this situation?


Affinity Group Meeting


12:45 – 1:45 pm | Location: Disneyland Grand Ballroom  | Environmental Bioethics

The Case for ‘Contributory Bioethics’

Travis Rieder, PhD

In recent years, a small philosophical literature has sprung up around what sure looks like a pressing ethical problem. In short, the problem is this: many of us believe that we can and do have individual obligations to refrain from contributing to massive collective harms—say, from producing luxury greenhouse gas (GHG) emissions; however, our individual actions are so small as to be practically meaningless. Can we then, justify the intuition that we ought to refrain? Or should we abandon this intuition and admit that there is nothing wrong with taking a transatlantic flight for the sake of a good meal?
In this paper, I argue that this debate may have been mis-framed. Rather than investigating whether or not we have obligations to refrain from contributing to collective action, perhaps we should ask whether we have reason to do so. However, this framing brings challenges of its own, since having reason not to contribute to collective harms will entail that we each have lots of reasons to act in contradictory ways at each moment. So how should we move forward? This question is the central puzzle of what I call ‘contributory bioethics’, and although I offer a few thoughts about how we might answer it, I mostly want to suggest that it’s a topic worthy of pursuit.

Concurrent Sessions


2:00 – 3:30 pm | Location: Magic Kingdom Ballroom 4 | Session 535

Bundled Surgical Care: Is It Ethical and Is It Optimal?

Casey Humbyrd, MD; Matthew DeCamp, MD, PhD; Scott Grant, MD, MBE; Kavita Shah Arora, MD, MBE

Our panel brings together four scholars who have different academic backgrounds, clinical practices, and different ethical theoretical commitments to facilitate discussion of this evolving health policy issue. While there is widespread agreement that the longstanding “fee-for-service” model is problematic as it incentivizes volume rather than quality, there is less agreement on which model should instead be implemented. Bundled payments (one payment for all providers during a defined period of care surrounding a specific diagnostic code) and global billing periods (one payment for all services by a provider and his/her covering partners during a defined period of care surrounding a specific common procedural terminology code/s) have been offered and trialed as one such alternative. However, data are mixed regarding its the efficacy in terms of reducing cost while maintaining quality of care. Furthermore, such bundling may create disincentives to physicians to provide needed care or lead to “cherry-picking” of patients leading to disparities. One panelist will review the health services background of both fee-for-service and bundled surgical care, providing a balanced clinical, ethical, and policy framework of each model. Then, these frameworks will be applied to contemporary surgical practice in orthopedics, general surgery, and obstetrics/gynecology to illustrate strengths and pitfalls. Audience discussion will be facilitated in order to examine objections to presented ideas and work towards clarifying these important societal questions.


–Saturday, October 20–


Concurrent Sessions


8:00 – 9:00 am | Location: North Exhibit D-E Conceptual Approaches to Decision-Making I

Conceptual Analysis of Shared Decision Making in Clinical Care: When, Why, and How?

Mary Catherine Beach, MD, MPH; Somnath Saha, MD, MPH

Shared decision making (SDM), where doctors and patients discuss treatment options and arrive at a decision together, is universally advocated but has vastly different goals depending on circumstances. The objective of this paper is to address confusion regarding nuances of when, why and how patients ought to be involved in decisions. There is considerable disagreement about when SDM ought to take place. Some scholars advocate a process of shared decision making for all medical decisions, while others focus strictly on “preference sensitive” decisions. Our analysis considers the following factors that are relevant to decisions about when SDM ought to take place: risks and benefits, invasiveness of procedure, what counts as “reasonable” options, clinical practice guidelines, preference sensitivity, uncertainty, and prevention vs. treatment distinctions. We also address whySDM ought to occur. Most clinicians, even without ethics training, recognize SDM has a moral foundation built on respecting patient autonomy. In addition, utilitarian arguments are increasingly made about the instrumental value of involving patients in decisions in terms of future treatment adherence. Our analysis considers how the context changes the moral arguments made in its favor. Finally, we address how shared decision making ought to occur. Depending on the context, we outline a portfolio of communication behaviors that address its underlying moral goal. We outline communicative acts that represent the provision of information, emotional support, equalization of power, engagement of patient in treatment, and allowance for patients to disagree with recommendations or participate more fully in deciding between reasonable options if they desire.


2:00 – 3:00 pm | Location: Western | Emerging Topics in Research Ethics

Gain-of-Function Research and the 2018 Synthesis of Horsepox: Where Are We Now, and Where Are We Headed?

Alexandra Ruth, BA (PhD student)

In early 2018, a research team funded by Tonix Pharmaceuticals Inc. published results of an experiment that produced the blueprints for laboratory synthesis of a horsepox virus closely related to smallpox. The paper received considerable media attention and renewed debates about gain-of-function research (GOFR), which involves manipulating a pathogen to increase its virulence with the aim of better understanding future pandemic threats. First, this paper briefly summarizes the regulatory history of GOFR and current GOFR ethical frameworks. Next, Selgelid’s 2016 ethics framework for GOFR is applied to the recent case of horsepox. Key domains assessed in Selgelid’s framework include research imperatives, proportionality, minimization of risks, justice, good governance, evidence, and international outlook and engagement. This framework analysis will compare the 2018 horsepox case to the case of GOFR with influenza viruses for the purpose of vaccine development, contrasting the salient ethical concerns of each. Lastly, this paper will address the common utilitarian argument that GOFR is a waste of scarce government research funds given its limited epistemic value and potential risks, an argument enacted in reality in 2014 when the U.S. government halted all funding of GOFR. How might this limited-resources argument against GOFR be challenged by a future where private biotech companies with abundant financial resources may be the primary stakeholders involved in setting the GOFR research agenda? The paper concludes with an exploration of this question, forecasting the regulatory future of GOFR.


2:00 – 3:00 pm | Location: Disneyland Grand Ballroom | Session 548 –

Uncertain Times Call for Empirical Bioethics: Using Qualitative and Quantitative Methods to Inform Debate About Patient-Centered Outcomes Research

Stephanie Morain, MPH, PhD; Emily Largent, RN, JD, PhD; Stephanie Kraft, JD; Jeremy Sugarman, MD, MPH, MA

The rise of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) has sparked considerable debate over how well suited traditional ethical and regulatory oversight mechanisms are to these new research contexts, and how those charged with oversight of human subjects research should respond. This panel identifies areas of uncertainty regarding PCOR/CER oversight and illustrates the strengths and limitations of different empirical methods to characterize and address bioethics challenges in PCOR/CER. The session will use three empirical bioethics studies to elicit insights regarding (1) the appropriate role of empirical data in PCOR/CER policy; (2) identification of remaining PCOR/CER-related questions; and (3) selection of methods for future empirical ethics research. First: In an uncertain regulatory environment, empirical research can describe stakeholders’ views on what constitutes appropriate regulation. This presentation draws on a series of surveys with IRB members, patients, and the public to examine critical questions about balancing, interpreting, and implementing disparate stakeholder perspectives on oversight for PCOR/CER. Second: Patient preferences to inform consent approaches are a central consideration in decision making about ethical oversight for PCOR/CER. However, patients may lack understanding of relevant contextual considerations. This presentation describes the use of deliberative engagement methods to elicit patients’ informed preferences regarding oversight in PCOR/CER. Third: Uncertainty persists about whether PCOR/CER poses novel oversight challenges demanding new approaches, or whether existing frameworks satisfactorily address oversight challenges. This presentation describes the use of a Delphi panel comprised of ethicists, regulators, investigators, IRB members, patients, and others to develop consensus-based recommendations for PCOR/CER oversight.


315 – 415 pm | Location: North Exhibit I-J | Ethics & Emerging Technologies II

The Ethical, Legal, and Social Implications of Incorporating Human Genetics into Containment Care Science and Practice: A Survey of Biocontainment Unit Staff

Angie Boyce, PhD; Gail Geller, ScD, MHS; Jeffrey Kahn, PhD; Lisa Maragakis, MD; Jessica Mpamugo, M.S.; Brian Garibaldi, MD

After the 2014 Ebola virus disease (EVD) outbreak, such high consequence infections became a priority for infrastructure-building in the U.S. healthcare system; a national network of biocontainment units (BCUs) are actively working on preparedness efforts. Because of the severity of these infections, this network is likely to be an early adopter of new technologies, such as genome-based technologies. For example, if host genomics plays a role in who develops chronic sequelae to EVD infection, it is important to consider whether genotypic information should inform staffing and care decisions. In this presentation, we report the results of a national survey of biocontainment unit staff on their perceptions of the ethical, legal, and social implications of incorporating human genetics into containment care science and practice. A participatory design process was used for survey development, including consultation from national leaders in biocontainment, to maximize the utility of the findings for influencing containment care science and practice. The survey examines five biocontainment topics where human genetics may play a future role: activation decisions, BCU research, workplace genetic testing, incorporating genotyping into patient care, and scarce resource allocation. These findings of the survey will inform the development of guidelines and policies for biocontainment units to evaluate and adopt genomic technologies in an ethically and socially responsible manner.


3:15 – 4:15 pm | Location: Wilderness | Healthcare Ethics in Society

Reconfiguring “Civil Unrest” As a Public Health Determinant

Michael DiStefano, M. Bioethics

Following the death on April 19, 2015, of Freddie Gray following his arrest, many citizens of Baltimore took to the streets. An article in the September 2017 issue of The American Journal of Public Health characterizes this period of “civil unrest” as community violence and describes the effect of this period on maternal and child health. In my paper, I challenge this conception of civil unrest as community violence. Broadly, this conception fails to consider a greater range of possible motivations, behaviors, aims, and value inherent in civil unrest. I provide a brief negative argument against this conception of civil unrest as community violence before providing positive arguments for two alternative conceptions. I reconfigure civil unrest first as hopeful protest and second as apt anger, drawing on the work of Margaret Urban Walker and Amia Srinivasan, respectively. Finally, I discuss the implications for public health research and practice that arise from these alternative conceptions. I show how conceiving of civil unrest as hopeful protest directs researchers to identify and study the impacts on health of those participating in civil unrest and not simply its victims. In the case of civil unrest as apt anger, I discuss how this reconfiguration both identifies the value of effectively registering injustice and calls on others to share in this appreciation of injustice, thus forming the basis for a renewed co-reactive relationship in which a moral community can be made and sustained, and through which—hopefully—real improvements in individual lives can be made.


3:15 – 4:15 pm | Location: Magic Kingdom Ballroom I | Session 531

Does “No” Mean “No” in Pediatric Research?

Micah Hester, PhD; Erin Talati Paquette, MD, JD, MBe; Lainie Ross, MD, PhD; Margaret Moon, MD, MPH

According to 45 CFR 46, a minor’s dissent is only dispositive in research that provides no prospect for direct benefit (sections 404, 406, and 407, but not 405). This raises questions regarding the role of minors in research decision-making. The panel explores the meaning of “assent,” the purpose of “dissent,” the scope of parental authority, and the value of “benefit” in research.Panelist #1 (PhD) argues that the regulations equivocate on the concept of “assent” which leads to requiring assent for all trials but only requiring “affirmative agreement” in “non-beneficial” research. Panelist #2 (MD, JD, MBe) argues that assent should be dispositive, but prioritizes parental authority when there is the prospect of direct benefit that is solely available through research. Further, because the goals of research and clinical care differ, minors can independently consent to clinical care covered by specialized consent statutes (like contraception), but parental involvement is needed for research on these conditions.Panelist #3 (MD, PhD) argues that parents should have discretionary authority in enrolling their children into research in minimal risk research (404) and research that offers the prospect of direct benefit (405). She supports a role for both minors and parents in other research (406, 407, and conditions covered by specialized consent statutes).Panelist #4 (MD, MPH) argues that assent in pediatric research can be, at its worst, a comforting fiction that leaves children unprotected. At its best, it provides a chance to respect and promote the developing autonomy capacity of older children and adolescents.


3:15 – 4:15 pm  | Location: Monorail B-C | Session 580

The Drama of Uncertainty and Shifting Open Futures: Reimagining a Genomic Crystal Ball for Newborns

Lynn Wein Bush, PhD, MS, MA; Robert Truog, MD; Karen Rothenberg, JD, MPA; Christine Mitchell, RN, MS, MTS, FAAN

As the application of cutting-edge genomic technologies are currently being offered to parents at an exponential rate to predict conditions and traits of asymptomatic newborns, and emerging gene-editing treatments for infants with severe genetic disorders are reported increasingly as proof-of-concepts, the future is now for the inter-professional ASBH community to critically examine and debate the ethical complexities, psychosocial challenges, and policy implications of uncertain and shifting boundaries. Since almost a decade has passed when a fictionalized vignette-play imagining a genomic crystal ball was presented at various venues while exploring the hypothetical shift from newborn screening to newborn sequencing, a new vignette-play is being created to engage ASBH 2018 participants in re-imagining the genomic crystal ball for newborns and the implications with technologies on the current and near horizon. A diverse inter-professional panel and distinguished cast will use the pedagogical approach of dramatic narratives to actively engage bioethicists and humanities scholars together by going back to the future to reflect on the present and re-imagine the future to further enhance the interdisciplinary dialogue. More specifically, the 20-minute play and 40 minutes of robust discussion amongst panelists, actors, and audience will address the complex issues facing our multicultural society as we implement these technologies on newborns: the tradition to protect a child’s open future; re-imagining concepts of normalcy, identity, health, and illness; concerns of health disparities, justice, and equity in access to resources; respect for diversity and the dignity of the disability community; and potential consequences for altering DNA on future generations.


4:30 – 5:30 pm | Location: Western | Language, Rhetoric, and Ethics

Testimonial Injustice Reflected in Language Within Medical Records

Mary Catherine Beach, MD, MPH; Somnath Saha, MD, MPH

Language within medical records may reflect providers’ unconscious biases, reveal misconceptions, and convey stigmatizing attitudes from one provider that influence subsequent providers who care for the patient. We sought to characterize how these negative perspectives might manifest within the language of patient medical records. We conducted a qualitative analysis of the language used in medical records of 83 patients seen in the emergency department or admitted to the hospital with sickle cell disease, a genetic disorder primarily affecting persons of African descent characterized by unpredictable episodes of severe pain. We identified three themes describing how clinicians reveal negative attitudes: casting doubt on the validity of patients’ experience, stereotypes, and blame. Doubt about the validity of patient experience is conveyed by juxtaposing patient reports with discrediting comments (patient reports 10/10 pain but labs are stable). Negative stereotypes are perpetuated by highlighting patient comments that convey low education or socioeconomic status (pt not able to keep food down because “it goes straight through me in the diarrhea”). Finally, patients are blamed when providers highlight nonadherence (e.g. “still complains of pain but not wearing mandatory oxygen”). Although it is natural for clinicians to have both positive and negative feelings about patients, how such feelings impact information transmission in medical records may be unrecognized. This reflects a particular type of testimonial injustice, whereby the perspectives of patients are devalued due to prejudice on the part of clinicians. We suggest that this language be more carefully considered, and potential biases be acknowledged and addressed.


Affinity Group Meeting


6:00 – 7:00 pm | Location: Magic Kingdom Ballroom 2 | Public Health

What role should bioethics and medical humanities play in public discourse about public health issues? 

Travis Rieder, PhD

The Public Health Affinity Group welcomes scholars and public health practitioners interested in the relationship between scholarship and advocacy as we explore the following questions in a moderated panel session: What role should bioethics and medical humanities play in the public discourse about public health issues? When, how, and where should scholars speak out against unjust policies and advocate for vulnerable populations? 
This session will feature speakers who have promoted public awareness and/or political recognition of the ethical dimensions of two controversial public health issues which have recently captured public attention: (1) access to care for undocumented immigrants and (2) the opioid epidemic. Speakers include Nancy Berlinger, PhD; Mark Kuczewski, PhD; and Travis Rieder, PhD.

–Sunday, October 21–


Concurrent Sessions


9:45 – 11:15 am | Location: Magic Kingdom Ballroom 2 | Session 544

Children, Cancer, Culture: To Tell or Not Tell. Should Nondisclosure Requests Be Respected?

Yoram Unguru, MD, MS, MA; Abby Rosenberg, MD, MS, MA; Dan O’Connor, PhD; Rebecca Pentz, PhD

Truth-telling, including disclosure of “difficult diagnoses” like cancer, is a fundamental component of clinical encounters largely accepted by Western clinicians and adult patients. The predominant US view favoring disclosure is a minority view; globally, nondisclosure of a terminal cancer diagnosis remains common. Requests for nondisclosure often result from beliefs about cancer and the roles of families in caretaking. Ideas about health, sickness, and truth-telling are inevitably influenced by a particular culture and social milieu. Until the 1970s, it was widely believed that children should be protected from bad news such as a cancer diagnosis, resulting in a conspiracy of silence between parents and physicians. With improved therapies, greater psychosocial support, awareness that many children often know of their diagnosis, and the benefits of disclosure, attitudes shifted towards greater disclosure.In many non-US countries, the family unit has priority over the individual. Children are viewed not as individuals, rather as family members for whom parents are responsible. Accordingly, medical decisions for minors (and the elderly) are often made by the family. For example, in Asian-Indian culture, it is widely believed that a child’s death will be hastened if the child is unable to cope with a terminal diagnosis, explaining why some Asian-Indians prefer nondisclosure.Should parents prevent adolescents from knowing they have cancer? How should physicians reconcile their responsibility to be forthright and respect adolescents’ evolving autonomy while simultaneously respectful of culture and parental request? Is it ever acceptable to be less than completely honest? The panel presentation will be case-based.


9:45 – 11:15 am | Location: Western | Session 547

The Future of Bioethics Journals and Publication: How Can We Ensure Quality, Access, Sustainability and Impact

James DuBois, DSc, PhD; Holly A Taylor, PhD; Gregory Kraebnick, PhD; Karen Mashke, PhD

The future of bioethics as a field depends on the excellence, sustainability, and vision of the journals publishing bioethics research and analysis. As journals in many fields consider how to ensure the quality and rigor, reproducibility, and integrity of the research they publish, this workshop will feature the editors of four leading bioethics journals to discuss the challenges that bioethics journals and authors face. Multiple journal models are in competition, including open source vs. subscription-based and print vs. online. And authors confront predatory journals soliciting their work, impact factors susceptible to manipulation, and varying peer review. The National Academies’ 2017 report on Fostering Research Integrity argued that journals have a key role to play in requiring integrity and facilitating public accountability. This workshop will examine the role of journals in building an ecosystem of integrity and quality. The editors will explore the challenges facing their journals, compare journal responses, and engage the audience in a searching discussion of the future of bioethics journals and publication. This interdisciplinary workshop includes editors trained in philosophy, psychology, public health, and political science. The moderator will introduce the issues facing journals, authors, and the public. Each of the four editors will then present the challenges facing their journal, the journal’s strategy to date, and a vision for the future. The moderator will then pose questions to structure a highly interactive discussion with the audience. The workshop will culminate in synthesis of recommendations for the future of bioethics journals and publication.


9:45 – 11:15 am | Location: North Exhibit D-E | Session 626

Mapping the Terrain of Moral Suffering in an Uncertain World: Toward Transdisciplinary Collaboration

Joanne Braxton, PhD; Eric Busse, MBE; Cynda Hylton Rushton, PhD, RN, FAAN

The study of moral distress, moral injury, moral trauma, and moral conflict as well as diametrically related notions of moral resilience, moral repair, and moral integrity has gained increasing attention in the fields of clinical ethics, nursing, military psychology, theology, medical anthropology, chaplaincy, humanitarian response, education and more. However, there remains little consensus about the theoretical validity or applied utility of these terms across (and within) these disciplines despite their conceptual power and experiential salience. The proliferation of specialized and conflicting definitions occurs even as these terms seek to clarify shared ethical problems surrounding harmful conflicts of moral conscience and inequitable distributions of power in an ambiguous and uncertain world. In response to this general trend, we present a critical analysis of representative literature from related fields to set forth a preliminary conception of “moral suffering” through which researchers might situate broad inquiry on harmful or traumatic moral experience and possibilities for moral/ethical repair. Specifically, we identify various disciplinary and professional lacunae to argue that robust transdisciplinary collaboration is necessary for charting the spectra of moral experience and for interrogating the implications these distinctions might have for matters of justice in education, public health, military service, clinical care, incarceration, and future possibilities for deliberative democracy writ large. We conceptualize moral suffering as a locus for gathering researchers and practitioners to work cooperatively toward understanding the complex dynamics of moral suffering in diverse contexts and for mapping out an agenda toward its ethical amelioration.