The BI at ASBH 2015

October 14, 2015

The Berman Institute will be well represented at the 17th annual meeting of the American Society of Bioethics and Humanities (ASBH), as a group of faculty, staff and trainees are headed to Houston October 22-25.

 

In addition to visiting our booth in the ASBH exhibit hall, check out our diverse presentations (see below, and you can also access the full program online).

 

You can also follow us on Twitter: #ASBH15, with our @bermaninstitute, @aregenberg, and @kahnethx

 


Schedule at a glance:


Thursday, October 22

8 am–Noon
Preconference Sessions
1:30–5:20 pm
Concurrent Sessions
5:30–6:30 pm
Welcome Plenary Session
6:30–8 pm
Opening Reception with
Exhibits and Poster Display

Friday, October 23

7:30–9 am
Continental Breakfast in the
Exhibit Hall
Meet-the-Professor Session
7:45–9 am
Concurrent Sessions
9:15–10:15 am
Plenary Session
10:45 am–12:15 pm
Plenary Session
12:15–1:45 pm
Lunch (on your own)
12:45-1:45 pm
Affinity Group Meetings
2–3:55 pm
Concurrent Sessions
4–5:30 pm
Annual Members’ Meeting
Awards Presentations
President’s Address
6–7 pm
Reception for New Members
and Students

Saturday, October 24

7–8 am
Affinity Group Meetings
7:30-9 am
Continental Breakfast in the
Exhibit Hall
7:45–9 am
Concurrent Sessions
8-9 am
Affinity Group Meetings
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
2–5:55 pm
Concurrent Sessions
6-7 pm
Affinity Group Meetings
8–10 pm
Film Screening

Sunday, October 19

7–8 am
Continental Breakfast
8 am–12:05 pm
Concurrent Sessions
9:30–10:30 am
Concurrent Sessions

 


–Thursday, October 22–


Poster Session


1:00 pm

Jeffrey Kahn, Gail Geller, Theodore Bailey, Rachel Dvoskin, Priya Duggal, Michelle Lewis, Daniel Salmon, Andrea Sutherland, Chloe Thio
“Ethical, Legal and Social Implications of Genomics in Infectious Disease Management”

kahn_2014gellerTedBaileyracheldvoskinmichellelewis

 

Informed consent requires that physicians obtain permission from patients or their surrogates prior to treatment, but this requirement is essentially waived in emergencies. When patients are unable to give consent and seeking consent from surrogates would cause delay that threatens the effectiveness of treatment, consent is typically presumed. While criteria under which physicians can justifiably provide potentially life-saving therapies without consent have not been explicitly developed, the implicit criteria appear to primarily rest on considerations of beneficence. For example, presumed consent for cardiopulmonary resuscitation (CPR) after cardiac arrest has been firmly established in practice, largely because of its perceived effectiveness in preventing sudden cardiac death. However, it is unclear whether presumed consent should apply to other potentially life-saving therapies, such as extracorporeal membrane oxygenation (ECMO) after failed CPR. ECMO is a high-tech, invasive treatment that can provide circulatory and ventilation support in critical illness. As ECMO becomes less expensive and easier to use, its use is increasing. It may eventually be available in most emergency departments to provide a last-chance therapy as a default for those who suffer out of hospital cardiac arrest and have failed CPR. In this paper, we explore the moral basis of presumed consent for emergency treatments. We then apply those considerations to invasive, potentially life-saving therapies that can potentially be offered on a public health scale, using ECMO after failed CPR as a sustained case example. Finally, we propose explicit criteria under which consent for emergency treatments can be presumed.


Yashar Saghai
“Global Food Ethics Project”

saghai

 

Discussions about global food security can be riven with disagreement—disagreement about the empirical facts as well as disagreements about what are the most ethical responses to food insecurity. Assessing these ethical disagreements, and the core ethical issues at the heart of the global food security challenge, is the mission of the 3-year project that this poster will introduce to ASBH members. More specifically, our goal was to identify, through an iterative deliberative process, ethical issues in global food security that are both of critical moral importance and tractable in 3 to 5 years. This work culminated in a multiday meeting involving 23 leading academics and experts from four continents and seventeen disciplines. The objective of this poster is to present our project, its process, and its main outcome, a research and policy agenda for global food security and ethics. Topics include: “Ethical Issues in Global and National Projections of Food Demand and Supply;” “Climate Justice, Agrifood Systems, and the World’s Most Disadvantaged Populations;” “Ethics of Meat-Consumption Reduction Interventions in High- and Middle-Income Countries;” “The Food Sovereignty Movement and the Exceptionality of Food Thesis;” “The Case for the Professionalization of Farming;” “Global Agricultural Research and Development: Ethics, Priorities, and Funders;” “Consumers, Certifications, and Labels: Ethically Benchmarking Food Systems.” This poster explicates the significance of food and agricultural ethics for bioethics, broadly construed.


Concurrent Sessions


1:30 – 2:30 pm

Cynda Rushton, Melissa Kurtz, Elizabeth Epstein, Martha Turner
“Nurses Fulfilling Their Ethical Mandate: Living the Code of Ethics”
Location: Level Two E

Rushton_JHU1140_a_square

 

Ethical issues are embedded in the daily practice of nursing. The ethical issues that keep nurses up at night are diverse and far-reaching. Given this reality and the urgent need to strengthen the ethical competence of all nurses‚ the first National Nursing Ethics Summit was convened to develop a blueprint for 21st Century Nursing Ethics. Fifty nurse ethicists and leaders representing the major nursing organizations created a blueprint focusing on clinical practice‚ education‚ policy and research.Prior to the Summit‚ The Code of Ethics for Nurses with Interprtive Statements underwent a 4 year revision process with publication of a revised Code in January 2015. The Code was posted for public comment with over 2700 responses suggesting updates or deletions. Based on these responses a Steering Committee prepared a second draft for public comment with final revisions approved by the ANA Board of Directors‚ updated language‚ an increased emphasis on leadership‚ and a stronger voice of the profession in health policy and global health are some of the changes.The Blueprint‚ coupled with the release of the revised ANA Code of Ethics‚ has been a catalyst for action within the profession. This session will review the context for ethical issues faced by nurses‚ highlight some of the recommendations from the National Nursing Ethics Summit and the key revisions of the ANA Code of Ethics for Nurses. Implications for how to “live the Code” in everyday nursing practice will be discussed.

5:00 – 5:20 pm


Rachel Fabi
“Ethical and Policy Implications of State-Level Variation in Access to Publicly-Funded Prenatal Care for Undocumented Immigrants”

Location: Grand Ballroom

RachelFabi

 

Current estimates place the population of undocumented immigrants living in the United States at approximately 11.2 million men‚ women‚ and children‚ representing approximately 3.7% of the U.S. population. Of the nearly four million babies born in the U.S. each year‚ 8% have at least one parent who is an undocumented immigrant.Because all children born within the borders of the United States are legal citizens‚ the government has a strong policy interest in ensuring that babies born to undocumented immigrants have the best possible health outcomes. There are also ethical arguments for providing care to all pregnant women‚ regardless of their immigration status.Undocumented immigrants face many challenges in accessing adequate prenatal care‚ including financial‚ structural‚ and psychosocial barriers. While several policy strategies exist to improve the ability of pregnant immigrants to access prenatal care—including state-funded expansion of Medicaid to all pregnant women regardless of immigration status‚ extending CHIP to the unborn fetus of pregnant immigrants‚ and presumptive eligibility mechanisms that do not require proof of citizenship—considerable variation exists across states in the uptake of such strategies.In this paper‚ we examine evidence from the literature about the problem of inadequate access to prenatal care for undocumented immigrants‚ summarize the existing policy mechanisms that states may use to provide this care‚ and examine the range of ethical complexities presented by variation in access to prenatal care.


–Friday, October 23–


Concurrent Sessions


7:45am-8:05pm

Theodore Bailey
“The Ebola Ethics Cascade: Mapping the Interconnected Ethical and Human Rights Dilemmas of the Ebola Epidemic”
Location: Level Two D

TedBailey

 

Now in its second year‚ the Ebola epidemic in West Africa has caused some 10‚000 deaths and 24‚000 infections while threatening and disrupting the lives of many thousands more; it has also precipitated a cascade of interconnected ethical and human rights dilemmas‚ the Ebola Ethics Cascade‚ that must be understood‚ anticipated‚ planned for‚ and to the extent possible averted or ameliorated as part of the global response to this epidemic and any future epidemics. An appropriate global response to Ebola must not only urgently and effectively treat those infected and prevent ongoing disease transmission but do so in a manner and by the means and measures that most fully satisfy the norms of ethics‚ human rights‚ and social justice. To guide such efforts‚ this paper looks to events and responses in the current Ebola epidemic to map the Ebola ethics cascade as an interconnected system of ethical and human rights dilemmas in which international‚ national‚ community‚ and personal responses to one dilemma can trigger or worsen other dilemmas. The normative coordinates of the map are drawn from infectious disease ethics‚ international human rights‚ and Madison Powers and Ruth Faden’s framework of social justice that prioritizes averting and alleviating clusters of mutually reinforcing disadvantages in multiple ethically fundamental dimensions of human well-being. These are applied to identify and characterize interdependencies among the ethical and human rights dilemmas that have arisen in relation to key clinical and public health measures‚ social responses‚ and scenarios during the current Ebola epidemic.


Kevin Riggs
“Physician Cost-Consciousness: Normative and Empirical Dimensions of an Emerging Concept”
Location: 343B

Riggs_2013_sm-1

 

Physicians drive much of health care spending‚ but the role they should play in cost-containment is uncertain. The term “cost-consciousness” has recently emerged in debates about cost-containment‚ usually used with positive connotations to describe the notion that being conscious of costs will be an important part of any solution to restraining health care costs. However‚ the term has not been clearly defined and is sometimes equated with related concepts such as cost-awareness‚ high-value care‚ and waste reduction. First‚ we construct a conceptual framework of cost-consciousness as a descriptive concept. We define cost-consciousness as an intentional posture of incorporating cost considerations into clinical decision making‚ in addition to expected medical risks and benefits. This definition requires stipulation of additional facets‚ including whose costs are being considered and how cost information gets incorporated into the process. Next‚ we review the empirical research literature‚ and explore how results might support various normative claims. Surveys and qualitative studies of patient and physician attitudes support a concept of “appropriate cost-consciousness.” Finally‚ we describe how this conceptual framework will improve the ongoing debate surrounding normative aspects of physicians’ role in cost-containment. This includes delineating cost-consciousness from related concepts. Ultimately‚ a clear concept of cost-consciousness will be critical to ensuring that physicians are able to meet their duties to patient well-being and the just distribution of scarce societal resources.


8:00 – 9:00 am


E. Charlise Caga-Anan, Liza Dawson, Kelly Edwards, Debra Mathews
“Bioethics Research within NIH: Strategies and Metrics for Success”
Location: 329
mathews

 


2:00 – 3:30 pm


Rachel Fabi
Student Paper Award Competition
“Bioethicists or Bunglers? The Role of Empirical Bioethics in Kant’s Moral Law”
Location: 329

RachelFabi

 


3:30-3:50 pm


Travis Rieder, Miriam Shapiro
“Chronic Critical Illness: How Does Our Evaluation of a Child’s Interests Change?”
Location: 335C

traviscrop

 

The goal of critical care medicine is not only to save life but also to restore function. An increasingly prevalent side effect of medical technological capabilities is partial success—life with limited function and prolonged hospitalization. We are concerned with infants and children who become “chronically” critically ill‚ unable to leave an ICU or be weaned from life-sustaining technologies.We focus here on the dual factors of advancing technology that continually pushes the bar on ‘obligatory’ care and the psychological effect of prior decisions on both parents and medical staff. We worry that successes in medically managing life-threatening events lead us to continually feel both obligated to use aggressive interventions and confident in our ability to manage each discrete event without thinking critically about how each day of medical management fits into a long-term goal of care. This is further compounded by the fact that our past decisions create psychological effects in the present: if utilizing life-saving technology was the right thing to do yesterday‚ how could it not be today?We suggest that there are relatively common cases in which ongoing aggressive intervention is no longer in the child’s interest‚ but that the factors cited above make it very difficult for the parents and medical team to come to this conclusion. There is moral concern that this unintended effect of well-intentioned treatment results in suffering‚ to which our systems of care are only slowly responsive.

–Saturday, October 24–


Concurrent Sessions


10:45 – 11:45 am


Lynn Bush, Christine Mitchell, Karen Rothenberg, Robert Truog
“Expressing Uncertainty: Pediatric Genomics in Play”
Location: 335C

rothenbergsq

 

The rapid advancement of comprehensive genome sequencing into the clinical pediatric setting calls for creative pedagogical approaches to explore the ethical and psychosocial dilemmas surrounding uncertainty that multidisciplinary healthcare professionals and families currently experience with frequency. An original play will premiere to illuminate implications of uncertainty, inherent with genomic technologies, and facilitate interprofessional discourse amongst the presenters, actors, and audience. (Actors include Christine Grady, George Hardart, Charlotte Harrison, John Lantos, Christine Mitchell, Bob Truog.)

 

The 30-minute play illustrates how much context matters in the ethical debate surrounding genome-based sequencing by weaving in scenarios that bring to life clinical paradigms of uncertainty from fictional characters with diverse perspectives. A spectrum of views will then be shared by the interdisciplinary bioethicists-presenters (psychologist, attorney, nurse, physician) and cast of distinguished ethicists-actors to further engage the audience in lively discussion concerning ethical implications for patients, families, and healthcare providers when faced with the complexity of uncertain genomic information.

 

Because tolerance for uncertainty is varied and often shifting as are phenotypic expressions, and characterizations of genetic variation are not always static, all involved in the communication and decision-making process are affected. Further influencing the informed consent process, the return of findings, and beyond is the reality that our understanding of functions and database curation are limited and subject to modification over time. Although uncertainty is present in all of medicine, pediatric genomics creates even broader implications, to include blood relationships and ethnic communities. While these challenges provide the session’s drama, the play serves as a vehicle for enhancing interprofessional ethics education, enabling us to learn to better manage uncertainty.


2:00 – 3:00 pm


Debra Mathews, Travis Rieder, Tina Rulli, Justin Lowenthal
“On the Ethics of Mitochondrial Replacement IVF: Medical Resources‚ Relative Risk‚ and the Way Forward”
Location: Level Four D

mathewstraviscrop

 

The goal of this panel discussion is to reflect on a variety of ethical and policy considerations related to mitochondrial replacement IVF (mtIVF). Although the speakers do not share a uniform view concerning how we should move forward regarding this technology‚ they do share the view that much of the discussion on this topic has been misguided. Media coverage‚ in particular‚ has tended toward the sensational with regard to the discussion of both the risks and benefits.This panel aims to de-sensationalize the discussion surrounding this technology‚ and to advance a more sober accounting of its risks and benefits. First‚ our moderator suggests that an honest look at the benefits of mtIVF paints a very different picture from that portrayed by some of its advocates. As a result‚ our first presenter argues that the technology does not meet the social value requirement necessary for ethical clinical research‚ given that it does not treat the mtDNA disease of actual sufferers. Our next presenter‚ however‚ argues that the risks of mtIVF are no greater than many other risks that we already accept‚ and so we must be careful not to object to the technology simply based on its novelty. Our final presenter then situates the other speakers’ remarks in the current US policy debate‚ given the UK experience in the seven months following legalization‚ and discusses how we can move into the regulatory phase with a realistic picture of the technology?


3:50 – 4:10 pm


Stephanie Morain
“Physician Truthfulness in Primary Care: A Qualitative Exploration”
Location: 343A

morain

 

Physicians’ duty to communicate honestly with patients is a clear norm of medical practice. Near-universal agreement on the theoretical importance of truthfulness notwithstanding‚ the realities of clinical practice are often more complex. Prior research identifies several situations in which physicians may find it difficult to be truthful with patients‚ including disclosure of medical errors or grim diagnoses. However‚ both empirical research and ethical analyses have generally focused on communication within specialty practice‚ particularly oncology and end-of-life care. The situations encountered in primary care remain relatively unexplored. In what types of situations do primary care physicians face difficult decisions related to truthfulness? How do they determine whether to tell the truth in various situations‚ or how much to tell?In this paper‚ we report on a qualitative study of truthfulness in primary care. Through focus groups and individual interviews‚ we identify: circumstances in which primary care physicians face challenges related to truthfulness‚ their reasons for deviating from truthfulness‚ and their beliefs on the acceptability of such deviations. We find that‚ while physicians report honesty to be a core value of medicine‚ other considerations may override this value in everyday practice. Common circumstances presenting challenges involved prescribing pain medications‚ patient dementia‚ and communicating clinical uncertainty. Our results provide a nuanced understanding of truthfulness in primary care‚ and the factors that influence truthful communication. Moreover‚ they suggest the need to augment opportunities for additional training in the identification‚ analysis‚ and management of issues related to truthfulness encountered in everyday clinical practice.


–Sunday, October 25–


Concurrent Sessions


7:45 – 8:05 am


Amy McGuire, Jason Vassy, Leila Jamal, Latrice Landry, Robert Green
“An Initiative for Whom, Precisely? On Equity and Evidence in Precision Medicine”
Location: Level Two A

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In January 2015‚ President Obama announced that the United States government will invest hundreds of millions of dollars in a Precision Medicine Initiative to develop disease prevention and treatment strategies that take patient variability into account. Whether this investment will reduce or exacerbate health disparities in the future depends critically on how current developments in genomic research‚ infrastructure and policy unfold. One urgent justice concern is that for historical reasons‚ and because of delays in constructing clinical genome databases‚ individuals with European ancestry stand to benefit more from precision medicine than any other group. In this session‚ we will use case studies of African American participants from the MedSeq Project‚ a randomized controlled trial of clinical genome sequencing‚ to illustrate how current infrastructures and policies for genomic medicine may exacerbate healthcare disparities unless (a) key knowledge gaps are filled and (b) clinical tools are optimized to enhance their performance in non-European patients. We will subsequently propose two strategies to prevent genomics from contributing to health disparities at this critical phase of infrastructure development for precision medicine‚ namely: a) the prioritization of African-American variant sharing in non-proprietary databases and b) the advancement of a medical and social scientific research agenda that is integrated with regular clinical care. We will end the session by reviewing ethical issues that may arise in the pursuit of these strategies.


8:00 – 9:00 am


Benjamin Wilfond, Holly Taylor, Mildred Cho, Kathryn Porter
“Novel Approaches in Research Ethics Consultation: The Impact of Collaboration”
Location: Level Four E

holly_taylor

 

Research ethics consultation‚ in contrast to clinical ethics consultation‚ is in its relative infancy. This panel will present three ongoing approaches for clinical research ethics consultation collaboration among a group of 40 consultants. First‚ a repository has been created that has collected data on ethics consultations from 10 institutions from 2012 and 2103. The 352 cases illustrate the range in the types of research and ethical questions addressed. An analysis of these data will be presented. Second‚ the group has regular webinars in which challenging or novel cases are presented. Since 2013‚ 10 of these cases have been published along with three commentaries each. A description of these 10 cases and commentaries and a systematic analysis of the approaches taken to address them will be presented to illustrate the a range of ethical issues brought to research ethics consultation services and the diversity of approaches taken to address them. Third‚ the group has been developing a “collaborative consultation” model where a consultant from one institution can invite colleagues from around the country to participate via phone for real-time consultations. The collaborative model can help the consultant to whom the case has been brought take advantage of additional expertise and broader diversity of analysis. Additionally‚ it can serve as a venue for interinstitutional training for new consultants. The model will be described and the complexity of the endeavor discussed. This panel is intended for those who already participate in research ethics consultation and anyone who is interested in research ethics generally.


11:00 am – 12:00 pm


Jeffrey Kahn, Gail Geller, Anna Mastroianni, Eric Meslin
“Ethics at the Intersection of Genomics and Infectious Disease: Assessing Equitable Distribution of Risks and Benefits
Location: Level Two F

kahn_2014geller

 

Genomics offers the opportunity for ‘personalized prevention’ in public health and clinical practice. To date‚ such efforts have focused on chronic diseases and their behavioral risk factors. Now there is growing interest in applying genomics to the prevention and treatment of infectious diseases. With greater understanding of genetic factors that affect immunologic responses to infection and the implications for treatment and prevention‚ complex ethical‚ legal and social implications (ELSI) will arise. In this session‚ an interdisciplinary panel will explore these issues‚ paying particular attention to the equitable distribution of risks and benefits among different subpopulations and in different public health contexts. A sociologist will present findings from stakeholder engagement activities to illustrate the perceived benefits and burdens of using genomics to assist in vaccine and treatment allocation decisions in the management of infectious diseases like hepatitis C and pandemic influenza. A philosopher will offer an international perspective by discussing the ethical opportunities and challenges that genomics introduces in the developing world generally and illustrate some of the particular challenges arising from genome-based approaches to addressing highly infectious diseases. A lawyer who is working on equitable inclusion of pregnant women in research will explore the ethical implications of integrating genomics into research on the prevention of HIV/AIDS that would target and potentially benefit at-risk pregnant women. The session will conclude with a general discussion of the relevance and policy implications of these ethical issues to a broad range of infectious diseases that create public health burden domestically and internationally.


Stephanie Morain, Rebecca Harris, Anne Barnhill, Joan Wolf
“The Ethics of Breastfeeding Promotion”
Location: 335 B

morain

 

Policies designed to increase breastfeeding rates and promote exclusive and longer duration breastfeeding engender considerable controversy. While proponents of breastfeeding champion these policies as vital to public health and as supporting women’s choices‚ opponents object to the intrusion into what is perceived as a private choice and object to the tone and content of breastfeeding promotion as stigmatizing or insensitive to families’ experiences.This panel seeks to make progress towards understanding the ethics of breastfeeding promotion policy by discussing three areas of ethical complexity. The moderator will provide a brief overview of ethical issues raised by breastfeeding promotion. The first presenter will then discuss financial conflicts of interest between health care providers and formula manufacturers‚ as well as contemporary efforts to end hospital-based formula supplementation and giveaways.The second presenter will take up the ethics of framing public health promotion in terms of “risks” and “benefits‚” including how such terms are defined‚ who stands to gain or suffer‚ and who pays the costs of the ostensibly health-promoting behavior. This discussion will address the social organization of responsibility for child and family health by problematizing an increasingly expansive narrative of maternal obligation.The third presenter will discuss the ethics of describing breastfeeding as having other desirable attributes besides being healthier‚ for example‚ being cheaper‚ more environmentally sustainable‚ natural‚ and better for mother-infant bonding. This could be interpreted as giving women information that enables them to make a better choice for themselves; but it could also be interpreted as overstepping the bounds of health promotion.

Also in attendance:

carresesq3Joseph Carrese: Core Faculty, Johns Hopkins Berman Institute of Bioethics; Director at Large, Board of Directors, ASBH
Janet Childerhose: Hecht-Levi FellowChilderhose
Emily Hahn: Hecht-Levi Fellowhahn
Okeke, Cameron - PicSQCameron Okeke: MBE Student
AmyPaulAmy Paul: Hecht-Levi Fellow
regenbergAlan Regenberg: Director of Outreach and Research Support
(@bermaninstitute, @aregenberg)
Theo Schall: Research Program Coordinator
seltzer_photoRebecca Seltzer: Hecht-Levi Fellow
YUsqYoram Unguru: Core Faculty

 

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