The BI at ASBH

October 8, 2014

Many Berman Institute faculty and trainees will travel to sunny San Diego October 16-19 for the 16th annual meeting of the American Society of Bioethics and Humanities (ASBH), as well as the overlapping meeting of the American Society of Human Genetics (ASHG) October 18-22.

 

In addition to an informational booth in the ASBH exhibit hall (come visit us!), the Berman Institute will be well-represented among presenters. Below is a briefing on where we’ll be when, and you can also access the full programs online: here for ASBH and here for ASHG.

 

If you can’t attend in person, follow along on Twitter: #ASBH14 with our  @bermaninstitute@aregenberg, and @kahnethx


At a glance:

Thursday, October 16
8 am–Noon
Preconference Sessions
Concurrent Sessions
Concurrent Sessions
Concurrent Sessions
5:15–6:30 pm
Welcome Plenary Session
6:30–8 pm
Opening Reception with
Exhibits and Poster Display
Friday, October 17
7:30–9 am
Continental Breakfast in the
Exhibit Hall
Meet-the-Professor and Meet-
the-Author Sessions
8–9 am
Concurrent Sessions
9:15–10:15 am
Plenary Session
Concurrent Sessions
12:15–2:30 pm
Lunch (on your own)
Career Path in the Exhibit Hall
2:30–3:30 pm
Concurrent Sessions
4–5:30 pm
Members’ Meeting
Awards Presentations
President’s Address
6–7 pm
Reception for New Members
and Students
Saturday, October 18
7–8 am
Continental Breakfast in the
Exhibit Hall
Concurrent Sessions
9:15–10:15 am
Plenary Session
11 am–Noon
Concurrent Sessions
ASBH/ASHG Satellite
Concurrent Sessions
Concurrent Sessions
4:15–5:45 pm
Concurrent Sessions
7:15 pm–8:30 pm
Special Presentation
Sunday, October 19
7–8 am
Continental Breakfast
Concurrent Sessions
Concurrent Sessions
Concurrent Sessions

October 16


12:30pm – Location: Indigo Foyer

Kevin Riggs, “Riggs_2013_sm-1-100x100Should Consent for Invasive Life-Saving Technologies be Presumed?”
Poster Session
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.


1:30pm-2:30pm – Location: 206

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Betty Black. “Caregivers’ Perspectives on Their Role as Study Partner in Dementia Research”
Research Ethics Paper Session 1
Research on Alzheimer disease and other dementia usually requires a study partner for each participant. Typically, study partners are family members who are often the patient’s informal caregiver. While study partners are vital to dementia research, little is known about their experiences. This qualitative study examined the responsibilities and experiences of caregivers serving as dementia research study partners. Semi-structured interviews with 60 study partners involved in 11 dementia studies at two research sites were recorded. Interview transcripts were content analyzed by summarizing, coding the text and identifying themes and sub-themes in the data. Most caregivers were white (91.7%), the subject’s spouse/partner (80.0%), female (61.7%) and retired (51.7%). On average, they were age 64.6 (±11.6), with 16.6 (±3.3) years of education. Study partner tasks included participating in enrollment and post-enrollment decision-making, facilitating study visits (e.g., scheduling, transporting, accompanying the patient), serving as an informant (e.g., reporting changes in function/behaviors, adverse events), and ensuring protocol adherence (e.g., monitoring pill-taking, fasting for blood draws). They provided comfort and encouragement to enable subjects to participate in procedures (e.g., cognitive testing, MRIs, LPs, infusions) and to complete studies. Aspects of attending study visits (e.g., travel/traffic, long visits/waiting) were burdensome to the majority of study partners, but most viewed studies’ potential benefits (e.g., information on patient’s status, hope for positive outcomes, contributing to scientific advancement) as outweighing study burdens. Study partners are critical to conducting dementia research. Their responsibilities should be made explicit during recruitment, and their interests as caregivers should be considered during research involvement.


2:45pm-3:45pm – Location: 204A

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Karen Rothenberg, “Illuminating Interprofessionalism: The Drama of DNA from Prenatal to Newborn Screening and Sequencing”
The significance of interprofessional collaboration when applying genomic screening and diagnosis to newborns, pregnant women, and fetuses is illuminated in this panel session that integrates the premiere of a play. Our experience supports using dramatic narratives as a pedagogical approach to stimulate discourse amongst professionals from differing disciplines and perspectives on complex ethical, psychosocial and policy issues raised by information discovered through next-generation sequencing.

This drama brings to life the promises and challenges brought forth by the application of genomic technologies prenatally and at the beginning of life, in clinical, public health, and research domains. The fictionalized characters cover thorny ethical terrain traversing from non-invasive prenatal testing to newborn sequencing. As these technologies segue temporally, so too does the play. Act I illuminates the journey embarked on by a couple considering prenatal testing and their interprofessional healthcare team, while Act II revolves around a diverse group of professionals collaborating on screening, sequencing, and caring for the newborn.

The panel-presenters and actors are bioethicists from multiple professions across academic institutions throughout the country. Before and after each Act, the presenters explore implications raised in the play. To enhance interprofessional insight, actors play roles other than their chosen profession and share perspectives while engaging in discussion with the audience following the play.

By highlighting variation of voices on issues and contextual nuances, including the commonalities and distinctions between screening and diagnostic testing and the quality of information and counseling generated by genomic technologies, this session encourages interprofessional communication.

Actors will include: Jeff Botkin, Christine Grady, Barbara Koenig, John Lantos, Amy McGuire, and Christine Mitchell.


4:00pm-5:00pm – Location: Indigo CDGH

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Debra Mathews, “Articulating the Goals and Assessing the Impact of Bioethics Projects: A Report from the ABPD Working Group”
A working group of the Association of Bioethics Program Directors (ABPD) will present its efforts to develop metrics for assessing the impact of National Institutes of Health (NIH)–funded bioethics research as part of an ongoing conversation with NIH leadership. In an effort to get feedback on our progress from the broader community, we will make a short presentation and follow with a moderated discussion of our process and products, including questions related to the goals of bioethics research in all its forms.


October 17


10:45am-12:15pm – Location: Aqua AB

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Carleigh Krubiner, “Advancing Research on Pregnancy and HIV: Ethics and Engagement”
Despite tremendous advances in the science to prevent, treat, and manage HIV since the epidemic emerged, we still know very little about how to best address the needs of a key population affected by HIV: pregnant women. An estimated 16.1 million women are living with HIV worldwide, with millions more at risk of becoming infected. Many are of reproductive age, raising important medical and ethical questions about optimal HIV prevention and management strategies surrounding conception and pregnancy. Yet research critical to addressing questions at the intersection of women’s reproduction and HIV have been thwarted. Ethical and legal concerns about medical research that includes women who are pregnant, or may become pregnant, have led to their widespread exclusion from studies. To address this gap, we launched a collaborative, Interdisciplinary (2) discuss our inclusive and inter-professional approach to developing an actionable, ethical framework for responsible conduct of research on HIV and pregnancy; (3) present findings from a series of engagement meetings with HIV investigators to identify pressing scientific questions, perceived barriers, and ethically and legally challenging cases; (4) interactively work through case studies to navigate the ethical, legal, and regulatory challenges associated with including women who are or may become pregnant in specific HIV research activities.


October 18


8:00am-9:00am – Location: Aqua D

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Cynda Rushton, “Managing Conscientious Objections in the ICU: American Thoracic Society Recommendations”
ICU clinicians sometimes have conscientious objections (COs) to providing or disclosing information about medical services. The American Thoracic Society convened a multi-disciplinary working group to develop guidelines for managing COs in ICUs. The four recommendations in the guidelines will be the subject of the panel: 1) COs in ICUs should be managed through institutional mechanisms rather than ad hoc by clinicians.  Healthcare institutions should develop and implement CO policies that encourage prospective management of foreseeable COs and that provide a clear process to manage unanticipated COs. 2) Institutions should accommodate COs in ICUs if the following criteria are met: a) the accommodation will not create undue risks of harm for the patient; b) the accommodation will not create undue burdens for other clinicians or the institution; and c) the CO is not based on invidious discrimination. 3) An individual clinician’s CO should not be accepted as sufficient justification to forgo life-prolonging therapies that the clinician views as medically inappropriate or futile against patient/surrogate wishes. 4) Institutions should promote open moral dialogue, provide moral support services, and generally foster a culture that respects diverse values in the critical care setting.

The moderator, a pediatric intensivist, will present reasons for developing a CO management policy and will describe the process of its development. One panelist, a philosopher, will explain and analyze the first and second recommendations. Another panelist, an adult intensivist, will explain and analyze the third recommendation. A third panelist, a nurse, will explain and analyze the fourth recommendation.


8:00am-9:00am – Location: 311A

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Stephanie Morain, “Responsible Government or Nanny State? Evaluating the Legitimacy of Public Health Laws for Noncommunicable Disease Control”
Law and Public Health
What is the appropriate scope of government authority to address noncommunicable disease and its behavioral underpinnings? As evidenced by the recent and heated controversy raised by New York City’s proposal to limit the size of sodas and other sugar-sweetened beverages, how broadly we understand the scope of public health authority shapes how we evaluate the legitimacy of public health strategies to protect and promote population health. Within the field of public health ethics, evaluations of this scope and the resulting implications for public health policies have focused around the Millian harm principle. From this perspective, public health policies that restrict individual liberty are only permissible insofar as they are undertaken to prevent harm to others. In this paper, I challenge the appropriateness of the harm principle to evaluate the legitimacy of public health policies to address noncommunicable disease. I argue that we should move away from the harm principle as the basis for assessing the legitimacy of public health policies, and introduce John Rawls’s legitimacy principle as an alternative framework by which to assess the state’s moral authority to enact such policies. To explore how this principle might guide policy decision-making, I offer three test cases: mandatory vaccination for epidemic disease control, “calorie posting laws” for obesity, and bans on smoking in private spaces. I suggest that the legitimacy principle better frames the relevant liberty interests at issue in questions of public health policy, and may offer a more robust protection for individual liberty than does the harm principle.


11:55am-1:00pm – Location: San Diego Convention Center, Room 30, Upper Level

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Gail Geller and Jeffrey Kahn, “The Role of Genomics in the Prevention and Treatment of Infectious Disease: Identifying the Ethical, Legal, and Social Implications (ELSI) for Public Health and Clinical Practice (listed on agenda as Issues in Immunogenic Screening for Infection Risk)”
ASBH/ASHG Satellite Meeting
The Johns Hopkins P20 (planning CEER) is designed to identify and anticipate the ethical, legal, social, and policy (ELSI) implications of incorporating genomics in the prevention, treatment, and control of infectious diseases and epidemics.  Drawing on a novel framework for mapping ELSI issues at the intersection of genomics and infectious disease, this presentation will highlight and compare the clinical and public health implications in the context of two different types of viral infections: acute/airborne (e.g., pandemic influenza) and chronic/blood-borne (e.g., hepatitis B or HIV).  Addressing the ELSI issues as the science advances will inform the development of ethically-responsible recommendations regarding applications of genomics to the management of a broad range of infectious diseases that create significant public health burdens both domestically and internationally.


1:30pm-2:30pm – Location: Indigo CDGH

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Cynda Rushton, “A National Nursing Ethics Summit: Implications for Inter-Professional Practice and Education”
From its early beginnings, ethics has been imbedded in the profession of nursing. New ethical issues have emerged in contemporary nursing that were not recognized 20-30 years ago. Despite the centrality of the American Nurses Association Code of Ethics for Nurses, the recent Robert Wood Johnson “Future of Nursing” report is largely silent on the ethical aspects of nursing practice. Likewise, ethical issues are rarely explicitly highlighted in the strategic agendas of professional organizations or visible in nursing curricula. The absence of ethics from the research agendas of universities, professional organizations and government funding agencies has forestalled progress in building the evidence to guide interventions to address the gaps in clinical practice, education and policy. A groundbreaking National Nursing Ethics Summit of prominent nurse ethicists, professional nursing organization leaders and key stakeholders will be convened in the summer of 2014 to define the priorities and components of a call to action and strategic agenda for nursing ethics in the United States. The Summit will include consensus development of a comprehensive road map for disseminating and implementing recommendations focusing on clinical practice, education, policy and research. This inter-professional panel will present the recommendations from the Summit. Each of the panelists (Physician, Philosopher, and Ethicist) will review and critique the recommendations and offer insights regarding the strengths, gaps and recommendations for implementation and dissemination. Insights from their disciplinary perspectives will be used to engage participants in discussing the implications of the recommendations on inter-professional ethics in clinical practice, education, policy and research.


1:30pm-2:30pm – Location: Aqua EF

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Yashar Saghai, “Doing With, Doing For, and Doing To: Nudges and Participatory Influence”
Following the ground-breaking work of Richard Thaler and Cass Sunstein, scholars and policymakers are busy exploring how research on ‘nudges’ (small changes in the architecture of choice that have large behavioral effects) can be applied to make people better off and to help solve a wide range of social problems. In this presentation, we discuss some normative questions regarding the relationship between the nudgers and the nudgees. We address the ways in which nudge theory, methods, and policy embody or conflict with approaches to welfare promotion and problem solving that are inclusive, participatory, or democratic.

Panelist 1 will focus on the clinical context, where informational asymmetries, high stakes, and patient vulnerabilities conspire to complicate doctor-patient deliberation and choice. The central conclusion of this paper is that nudging is inconsistent with the inclusive aim of the ‘shared decision making’ model in clinical care.

Panelist 2 will discuss the promises and hazards of workplace design to enhance performance, health, and wellness. The paper argues that usual procedures of participatory design do not sufficiently protect certain employees against the pressure exerted by environmentally, technologically and socially embedded nudges to conform to certain norms and expectations.

Panelist 3 focuses on the question of how the choice architect should determine the good towards which to nudge the patient or population and how to be inclusive, democratic, and sensitive to power differentials. The paper argues that the guiding theories (informed desires, hedonic utility, and perfectionism) all face theoretical objections and problems/paradoxes in application.  


2:45pm-3:45pm – Location: Aqua AB

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Lauren Ellis, “Exploring Ethical Rationales for Patient Engagement in Research”
Research Ethics Paper Session 6
Described as research conducted with patients rather than to them, patient engagement encompasses a range of activities that involve patients in research in ways other than as subjects of research. While research decisions have traditionally been the exclusive purview of scientists, interest in engaging patients in research is rapidly growing. For example, the Patient-Centered Outcomes Research Institute (PCORI), which was Congressionally authorized under the Patient Protection and Affordable Care Act of 2010 to fund research addressing questions important to patients, requires patient and stakeholder engagement in the planning, conduct, and/or dissemination of the research it funds. Despite this substantial interest, there is a lack of research examining both the pragmatic and ethical reasons for engaging patients. In this presentation, I will give a brief overview of the existing rationales for engaging patients in research including both ethical and pragmatic motivations. I will then introduce findings from a qualitative study in which interviews were conducted with PCORI-funded researchers engaging patients and with patients participating in the researchers’ patient engagement activities. Preliminary findings suggest that a primary reason for engaging patients is to obtain their expertise, which can be understood as a way to enhance the legitimacy of the research and the accountability of researchers. Drawing on relevant philosophical literature on accountability and legitimacy, I will flesh out this argument as an ethical rationale for patient engagement and discuss its implications for patients, researchers, and funders.


October 19


8:00am-9:00am – Location: 311B

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Holly Taylor, “Ebola: New and Old Lessons for Ethics and Public Health, Healthcare and Research”
Understanding history and also the genre conventions of the outbreak narrative is helpful in analyzing the current response to the Ebola epidemic in West Africa and its perceived threat to the U.S. We have all heard about the possibility of a cordon around the U.S., as well as of quarantine. Thinking critically about the experiences of Spanish flu and HIV/AIDS offers an instructive set of examples that we should heed as we consider responses to this humanitarian crises.


8:00am-9:00am – Location 204A

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Debra Mathews, “Integrating Ethics and Neuroscience Research: Recommendations from the Presidential Bioethics Commission and Integration in Practice”
As part of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, President Obama asked the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) “to identify proactively a set of core ethical standards—both to guide neuroscience research and to address some of the ethical dilemmas that may be raised by the application of neuroscience research findings.” The Bioethics Commission issued initial recommendations in response to the President’s charge concerning ethics integration in neuroscience research. Ethics integration aids scientists in recognizing and addressing ethical issues as they arise, and bioethicists in understanding science and technology with which they engage. This panel will focus on the Bioethics Commission’s recommendations and two examples of ethics integration in practice.

The first panelist will discuss the Bioethics Commission’s findings and recommendations. The second panelist will describe efforts undertaken by the Defense Advanced Research Projects Agency (DARPA)—a federal partner in the BRAIN Initiative—to integrate ethics into neuroscience research, for example, through an independent advisory panel, consultation services, and ethics research funding. The final panelist will discuss the integration of ethics and science through all levels of education, from secondary education through continuing education for experienced scientists. The audience will be invited to engage in discussion about ethics integration, including challenges facing integration, approaches to integration, and evaluation of these approaches.

Building from the Bioethics Commission’s recommendations, this panel will highlight opportunities for inclusive and interprofessional relationships among ethicists, scientists, and other stakeholders through ethics integration in neuroscience research.


9:30am-10:30am – Location: Aqua C

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Stephanie Morain, “Public Engagement: From Tokenism to Full Accountability”
Clinicians, researchers, and policymakers are facing increased calls for greater engagement with patients, research participants, and citizens.  While engagement is often driven by desires to make processes more inclusive, the concept of inclusion is broad and, on closer inspection, has several different sub-rationales. Moreover, there is considerable variation in how engagement is undertaken, which may affect the realization of specific rationales. Notwithstanding broad contemporary enthusiasm for engagement in policy and practice, there remains a lack of clarity about who should be involved, in which processes, when, how, and on what grounds. This is especially true for public health measures, which, as potentially intrusive interventions, are prime candidates for well-designed engagement.

Presently, there is little systematic work that clarifies rationales and modes of engagement.  This panel seeks to make progress towards this end by identifying lessons for engagement from three health policy contexts.

In the introduction, a legal policy analyst from a local health department will provide an overview of current engagement processes.  One panelist will then introduce core rationales for engagement and identify normative and practice challenges raised by enhancing inclusion, using a case study of priority setting in Latin America.  The second presentation will summarize findings from an empirical analysis of public engagement in health technology assessment in the UK, Germany, and France. The third presentation will describe engagement in domestic public health policy, providing an overview of state and local efforts to engage the public in policy decisions. 


9:30am-10:30am – Location: 206

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Theodore Bailey, “Medical Drift and Medical Shift: Social Justice and Surge Capacity in Accountable Care Organizations and Prisons with Application to New Hepatitis C Treatments”
Health Policy Paper Session 1
The recent development of direct acting anti-viral agents such as sofosbuvir for Hepatitis C raises ethical issues of how best to incorporate these medications and related clinical guidelines within accountable care organizations (ACOs) and prisons given that sofosbuvir-based treatment is exorbitantly priced ($80k US for a complete 12 week course) but cost-effective with high rates of sustained virologic response and low rates of adverse events compared to previous treatments. This paper approaches these ethical issues as issues of articulating a socially just policy of surge capacity in ACOs and prisons for “medical shifts” defined as institutionally disruptive increases from historical baseline in the volume of evidence-based medically-indicated therapeutic or preventive needs, whether driven by punctuated changes in population-level health (e.g. pandemic flu) or revolutionary medical innovation (e.g. new Hepatitis C treatments). Using Norman Daniels’ work on justice, this paper defends ACO and prison health care planning and budgeting on the basis of prior historical benchmarks as a reasonable mechanism for dealing with “medical drift”—the general but contingent tendency of population level health care and public health needs and technologies to change incrementally over mid-sized planning cycles—but argues that it is a critically incomplete means to support fair equality of opportunity given the possibility of both health- and technology-driven medical shifts. From this perspective, we argue for a general duty of surge capacity in ACOs and prisons for both health- and technology-driven medical shifts and sketch the implications of this for Hepatitis C management.


11:00am-12:00pm – Location: 300A

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Leila Jamal, “Patient Perceptions of Whole Genome Sequencing Results and Intentions to Use Non-Actionable Findings”
Background: There is much debate over best practices for returning results from clinical whole-genome sequencing (WGS). An emerging trend is to categorize WGS results into ‘bins’ based on their clinical utility. How patients interpret and use WGS results is not well understood. Methods: The MedSeq Project is a randomized clinical trial exploring the use of WGS in cardiology and primary care settings. At baseline (before WGS), 106 patient-participants were surveyed and a subset of 20 completed in-person, semi-structured interviews. Transcripts of recorded interviews were consensus coded and analyzed thematically. Target enrollment of 200 patient-participants is expected by spring 2014. Results: Consistent with previous studies, the majority of patient-participants (87%) wanted all their WGS results. However, qualitative data show that all interviewed patient-participants to date (n=20) had difficulty distinguishing among result types. When asked, they struggled to provide clear examples of results associated with preventable or treatable conditions as distinct from results with less clinical utility. These difficulties did not reflect poor study understanding or genetic literacy. Many patient-participants (n=17) wanted results associated with non-preventable or treatable conditions to inform their professional or financial plans, supportive care, and quality of life. Conclusion: Patients may not easily distinguish among the types of results described in WGS informed consent documents. They value WGS results for both medical and non-medical reasons. These data challenge the conceptual framework underlying emerging models of WGS results disclosure, which define the clinical utility of results and base disclosure policies on these definitions.


Also in attendance:

Josepcarresesq3h Carrese: director at large of ASBH, member of the standing committee on Clinical Ethics Consultation Affairs (CECA) 
finkelsteinDaniel Finkelstein
kahn_2014Jeffrey Kahn
Alan Regenbergregenberg
Travis Riedertrieder
Miriam Shapirodomed
sugarmanJeremy Sugarman
UnguruYoram Unguru

 

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