The Adam Yarmolinsky Medal, awarded to an NAM member from a discipline outside the health and medical sciences, honors distinguished service and contributions to the mission of the National Academy of Medicine.
“Faden, a bioethicist who has shared her expertise as a member of many National Academies’ committees since the late 1980s, is an oustanding scholar, teacher, and citizen, whose contributions to the NAM and the National Academies have been extensive and significant. In her work for the National Academies and Johns Hopkins University, Faden continues to set the agenda for emerging issues in bioethics and to prepare the next generation of scholars”, NAM. (Read an interview with Ruth Faden)
Dr. Faden was the Berman Institute’s Director from 1995 until 2016, and the inaugural Andreas C. Dracopoulos Director (2014-2016). Dr. Faden was, and is currently, the inaugural Philip Franklin Wagley Professor of Biomedical Ethics. In the twenty years in which Dr. Faden led the Institute, she transformed what was an informal interest group of Hopkins faculty into one of the leading and largest bioethics programs in the world.
Dr. Faden’s current research focuses on global justice theory and on national and global challenges in food and agriculture, learning health care systems, health systems design and priority setting, and access to the benefits of global investments in biomedical research. Dr. Faden also works on ethical challenges in biomedical science, with a particular focus on women’s health.
The Berman Institute will be well represented at the 19th annual meeting of the American Society for Bioethics and Humanities (ASBH), as a group of faculty, staff and trainees are headed to Kansas City, MO, October 19 – 22, 2017.
–Thursday, October 19–
2:45 – 3:45 pm
Location: Chicago A
Rescuing the Child, but Abandoning the Family: Exploring Our Moral Obligation to Support Families of Medically Complex Children
Emily Hahn, MD, Travis Rieder, PhD, Rebecca Seltzer, MD
With advances in critical care medicine, a growing number of children are surviving once fatal conditions, such as severe prematurity, genetic syndromes, and congenital anomalies. Being able to rescue these children often comes at major costs–financial, emotional, and physical. Many of these children have prolonged and recurrent hospitalizations, require multiple medications, and are technology dependent. For those fortunate enough to be discharged home, the intensive home care needs place significant burden on the families. Caregiver parents spend significant time and money providing home care needs. They experience exhaustion, stress, anxiety, burnout, and financial strain. Appropriate supports and resources, such as home nursing, respite, and care coordination, are inadequate or altogether lacking. If we value saving children’s lives at such costs, then why do we allow families to struggle without the necessary supports to successfully care for the very child that we saved? This places both the family and child in a harmful situation. Our first panelist, a neonatologist and palliative care fellow, will present a case of a critically ill infant and discuss what is known about the family experience of chronically critically ill children. Our second panelist, a primary care pediatrician and bioethics research fellow, will continue the case from the outpatient perspective and discuss the challenges faced by families who lack appropriate supports. The third panelist, a philosopher and bioethics scholar, will argue that our current rescue practices concerning such children imply the existence of an obligation to aid families in continuing to care for such children.
Location: Benton A
Autonomy and Moral Duty Paper Session: Do Prisoners Have Abortion Rights? An Examination of the Legal and Ethical Questions
This paper explores the moral and legal rights to access abortion care while incarcerated and argues that it is both unconstitutional and unjust for jails and prisons to deny female inmates access to abortion services. In the United States, there are currently 295,000 women incarcerated in jail, state prison, or federal prison, are all subject to different abortion policies, even within the same state. Federal courts have split on whether inmates have the right to elective (non-therapeutic) abortion, and if so, on what grounds. This paper reviews these decisions in light of the 1980 Supreme Court case Harris v. McRae which in upholding the Hyde Amendment’s ban on the use of federal funds for abortion care, explained that while Roe v. Wade established that the right to privacy encompasses a woman’s decision to terminate a pregnancy without government interference previability, it does not entitle her to any public enabling of that decision. The implications of this decision are complicated for those who are incarcerated, because inmates are not free from interference by the state. In order for an inmate to access abortion care, she must be enabled by the State; it is physically impossible for a pregnant inmate to exercise her right to choose without the State’s assistance. To address this legal and ethical dilemma, this paper considers the two legal tests applied by four Circuit courts, examines the philosophical literature on negative and positive rights, and proposes two new arguments in favor of abortion rights for the incarcerated.
4:00 – 5:00 pm
Location: Atlanta A
A New Framework for Animal Research Ethics
Tom Beauchamp, PhD, David DeGrazia, PhD, John Gluck, PhD, Jeffrey Kahn, PhD MPH
Several developments call for a reconstruction of animal research ethics. First, public concerns about animal welfare have increased substantially over time. Second, the scientific study of animal cognition has afforded deeper insight into animals’ needs and capacities. Third, animal ethics, a relatively new scholarly discipline, is growing rapidly. Together these developments challenge traditional assumptions about animals’ moral status and human responsibilities towards animals. Two of us have produced a new framework for animal research ethics, consisting in three principles of social benefit and four principles of animal welfare. The principles grow from three pivotal ideas: (1) Sentient animals have moral status and are not mere tools for human use; (2) The only acceptable justification for harming beings with moral status in research appeals to substantial, otherwise unattainable social benefits (if they exceed anticipated costs and harms); and (3) Any harms to animal subjects must also satisfy certain criteria of animal welfare. These principles are compatible with Russell and Burch’s influential Three Rs (reduction, replacement, and refinement) but call for a much more comprehensive program of animal subjects protection and greater emphasis on demonstrating an expectation of net social benefits. Suggesting the possibility of convergence between the biomedical and animal-protection communities, this framework shows that the socially beneficially involvement of animals in research is compatible with their having decent lives. The first speaker will situate the framework of principles in historical context. The second speaker will present the framework’s content and rationale. The third speaker will critically evaluate the framework.
4:00 – 5:00 pm
Locatin: Empire B
Beyond the Therapeutic Misconception: The Challenges of New Misconceptions About Research
Stephanie Alessi Kraft, JD, Sandra Lee, PhD, Jeremy Sugarman MD, MPH, MA, Kevin Weinfurt, PhD
Comparative effectiveness research and pragmatic clinical trials aim to gain knowledge by conducting systematic research in the context of patients receiving usual clinical care. This approach can present ethical challenges in the form of misconceptions as the assessment of risk and benefit and the approach to informed consent can differ from research that tests new interventions or that is conducted by researchers not providing care to the patient-participants. This interdisciplinary panel will discuss emerging ethical issues related to potential misconceptions about this research approach identified in recent empirical findings and discuss patients’ misunderstandings that seem related to the increasingly blurring boundaries between research and practice. After a brief introductory presentation, the second presentation will discuss the implications of results from a mixed methods study of patients’ views on comparative effectiveness research that point to an ‘investigational misconception,’ arising from the assumption that all research involves testing a new, non-validated intervention. The third presentation will present quantitative data from a nationally representative study of U.S. adults that suggest substantial misunderstandings about the nature of comparative effectiveness studies, arising from confusions with traditional clinical trials of new therapeutics. The final presentation will provide an historical analysis of conceptualizations of misconceptions about research, beginning with the therapeutic misconceptions, and address the ethical implications of emerging misconceptions for comparative effectiveness research and pragmatic clinical trials.
4:00 – 5:00 pm
Location: Van Horn A
Forging a New Paradigm for Public Health Emergency Research that Includes Pregnant Women in the Response: What We Can Learn from HIV, Ebola, and Zika
Ruth Faden PhD, MPH, Carleigh Krubiner, PhD, Anne Lyerly MD, MA
Biomedical research addressing infectious disease epidemics has provided the global health community with critical tools to combat new and reemerging threats, including advances in vaccine science and new therapies. Yet one segment of the population – pregnant women-is consistently left behind, due in part to concerns about the ethical inclusion of pregnant women in biomedical research. While challenges at the intersection of pregnancy and research are not limited to public health emergencies, they bring an extra layer of urgency and complexity with the accelerated pace of research and the close link between the research agenda and the emergency response. Assessing interventions in pregnancy late in product development or post-licensure may leave pregnant women without adequate preventives across multiple epidemic cycles. Moreover, pregnant women may face more severe or different threats from infectious pathogens than non-pregnant individuals that require pregnancy-specific research to address. A new paradigm is needed for emergent infectious disease research that is inclusive of pregnant women’s needs, ensuring that they fairly benefit from the research enterprise. This panel will explore what lessons we can learn from responses to past epidemics in meeting the needs of pregnant women. Drawing on the 35-year history of the HIV response, the 2014 Ebola crisis, and the recent Zika virus epidemics, we will examine how research in pregnancy has advanced, the challenges and gaps that remain, and how the research community can be better prepared to address pregnant women’s needs in future outbreaks.
–Friday, October 20–
Location: Benton B
Ethical Challenge, Policy Access, Critical Thinking, and Celebrating Collaboration Flash Session: Centering Health Care and Public Health Policy: Should We Cater to the Middle Class?
Govind Persad, JD, PhD
One value that frequently centers real-world policies, both literally and figuratively, is their effect on the middle class. Both health care and public health policies are frequently defended on the basis that they benefit the middle class or ensure its continuation. But policies that benefit the middle class at the expense of the absolutely disadvantaged raise ethical concerns. This preliminary project examines health care and public health policies that are designed to cater to middle class interests, and considers whether catering to these interests can be ethically justified. Such policies include retiree health care plans that are more generous to middle class earners, subsidies for health insurance that target the middle class, and public health initiatives that focus on conditions that are most prevalent among the middle class. I then examine potential justifications for these policies, including economic efficiency, solidarity, and moral desert. I conclude that while it may be politically appealing to center health policy around the middle class, doing so is difficult to ethically justify.
Location: Atlanta A
Bioethics & Genomics Center Stage: A Play Explores Ethical Challenges that Throw Medical Centers Off-Center
Lynn Bush, PhD, MS, MA, Christine Mitchell, RN, MS, MTS, FAAN, Karen Rothenberg, JD, MPA, Robert Truog, MD, MA, Rebecca Seltzer, MD
The ethical complexities and implications of comprehensive genomic sequencing in prenatal, neonatal, and pediatric settings take center stage, providing the inspiration and drama for the premiere of a vignette-play. As genomic technologies dive deeper, from before conception to fetuses, newborns, and children, so too does the play, with provocative scenarios centering on dilemmas that throw patients, health care teams, and bioethicists off-center. Our interactive journey to the center of bioethics and humanities begins with a new fictionalized case-based drama grounded in the real world of clinical genomics that is centered on a thorny landscape of ethical, psychological, and policy challenges at medical centers today. The play’s dialogue illuminates the role of bioethicists in helping genetics professionals and other healthcare providers center their focus to critically examine the significance of contextual variation, such as managing uncertainty and balancing diverse perspectives amongst families and inter-professionally. The play sets the stage to enhance reflective ethical consideration and foster lively inter-professional discourse. After the performance, the multidisciplinary presenters and cast of distinguished bioethicist-actors share insights based on their character’s role and their own professional experiences, followed by focus questions to elicit broad audience discussion. Presenters will then engage the audience in further conversation exploring commonalities and distinctions, especially involving the processes of decision-making, informed consent, and return of genomic findings. Lastly, participants will be encouraged to describe their experiences using this creative pedagogical approach elsewhere, both as a teaching tool inter-professionally and for community engagement to facilitate exploration and dialogue of ethical issues.
10:45am – 12:15 pm
Location: Van Horn A
Research Ethics Paper Session 1: Parental Views About Rare Disease Research and Advocacy: Implications for Patient Engagement Programs
Leila Jamal, PhD, MS
Background: Patient advocacy organizations (PAOs) have been involved in all aspects of health research, including recent patient-centered efforts to make research more respectful and relevant to patients. In the rare pediatric disease arena, PAOs are often led by parents of affected children. Little is known about why some parents become involved patient advocacy while others do not, or how parents experience and view patient advocacy and its role in research. Methods: This qualitative study interviewed parents of children with rare diseases about their experiences and views related to patient advocacy and research. Interview transcripts were coded and analyzed thematically using a combined deductive and inductive approach. Results: Thirty-four parents completed interviews. Sixteen held roles in advocacy organizations and 18 did not. Parent advocates became involved in advocacy to cope with their child’s condition or contribute professional skills. Those who were uninvolved in patient advocacy cited their caregiving obligations, a desire for privacy, and negative social dynamics among affected families as reasons. Most parents thought it made sense for researchers to partner with PAOs to engage patients in research but noted limitations of this approach. Conclusion: Not all patients and their families find patient advocacy accessible or helpful, and some parents see limitations to using PAOs as partners for patient engagement in research. These findings should inform the design of patient engagement efforts that aim to make research more relevant and respectful to patients by partnering with patient advocacy organizations.
–Saturday, October 21–
Location: Van Horn C
Undocumented Immigrants: Health Care and Moral Limits Paper Session: Provider Perspectives on Prenatal Care for Undocumented Immigrants: A Case Study in Practice and Ethics
In the United States, undocumented immigrants are ineligible for most forms of public health insurance, but 19 states have enacted one of two prenatal policy options that provide undocumented women with pregnancy coverage. One option is an exclusively state-funded Medicaid lookalike program for pregnant women regardless of immigration status, and the second is a State Plan Amendment that extends Children’s Health Insurance Program (CHIP) benefits to the unborn fetus of pregnant immigrants. The remaining 31 states do not provide public insurance, but women can seek care at Federally Qualified Health Centers (FQHCs) on a sliding fee scale. The ethical underpinnings of these policies may influence their implementation across different states, including the experiences of providers. This case study seeks to explore the attitudes and practices of clinical providers and staff who serve undocumented pregnant women in states with different prenatal policies, as well as the ethical tensions they encounter in their professional capacities. Data was collected using in-depth interviews with purposively sampled providers and staff at FQHCs in four states with different prenatal polices (MD, NY, CA, and NE). Interviews covered both the process through which undocumented women actually access prenatal care in practice in each case state and the ethical values at play for the professionals who provide this care. This presentation examines the various themes that arose across and within states, suggesting points of overlap and probing areas of disagreement.
Location: Van Horn A
Advancing HIV Care and Transplantation: Ethical, Legal, and Social Issues at the Center of HIV+ to HIV+ Solid Organ Transplants
Macey Henderson, JD, PhD, Sarah Rasmussen, Jeremy Sugarman, MD, MPH, MA
The HIV Organ Policy Equity (HOPE) Act was promulgated in 2013, allowing for organ transplants from HIV+ donors (HIV D+) into HIV+ recipients (HIV R+). Such potentially risky transplants aim to improve care for people living with HIV as well as help alleviate the organ shortage crisis more generally. In March 2016, our team performed the first HIV D+/R+ transplants in the United States. We are now leading efforts to develop and implement protocols so that organ procurement organizations and hospitals across the country can perform these novel, potentially life-saving transplants. This panel presentation will explore the challenging ethical, legal, and social issues we have encountered in procuring and transplanting of organs under the HOPE Act. We will describe preliminary data about the acceptability of HIV+ transplantation and motivations for organ donation among people living with HIV and discuss state-level legal barriers should HIV D+/R+ transplants move from their current status as research to clinical practice. This panel will include professionals from different disciplines who are working together to support the ethically appropriate advancement of HIV care and transplantation. The panelists include a physician and bioethicist evaluating and navigating the ethical issues related to HIV D+/R+ organ transplants, an expert in legal epidemiology working to remove state-level legal barriers to these transplants and bring clarification to HIV disclosure laws under HOPE Act research protocols, and a social scientist conducting interviews and surveys with individuals living with HIV about their experiences, attitudes, and perceptions of organ donation and transplantation.
Philosophy Affinity Group Meeting
Location: Benton A
Govind Persad, JD, PhD, will give a presentation during the Philosophy Affinity Group Meeting: “Rethinking Financial Risk Protection in Universal Health Coverage.” This presentation was selected as the top presentation by blind review from all submissions to the Philosophy Interest Group’s call for proposals.
–Sunday, October 22–
Location: Empire B
Philosophy / History Paper Session 5: The Many Moral Reasons Not to Make New People
Travis Rieder, PhD
Antinatalism, the view that creating a new person is (or tends to be) bad or wrong, seems to be gaining steam. Although still unpopular, in the last decade there has been a significant increase in the number of academic antinatalist arguments. Although there are certainly variations, such arguments tend to defend the claim that each of us is obligated not to procreate for some particular reason. For instance, we are obligated not to procreate, because doing so harms the created child, damages the environment, or fails to respond to the need of an existing orphan.
An interesting feature of the antinatalist landscape is that most antinatalists tend to focus on one, or perhaps two, features of procreation that they find morally problematic. As a result, it may often seem that, if the particular argument being made can be resisted, then the challenge from antinatalism has been successfully defeated. In this talk, I will argue that this comforting thought is misguided. An honest look at all of the morally relevant considerations for and against procreating reveal the striking power of the antinatalist position. By abandoning the quest for an ‘obligation’ not to procreate, and instead arguing that there are many good reasons not to procreate, I suggest it becomes more difficult to feel we have defeated antinatalism entirely. My conclusion of a ‘moderate antinatalism’ is that there is at least a burden of justification on those who defend procreation, and that this burden is likely very serious.
Location: Exhibit Hall B
Deciding Together and Family Experience of Care Paper Session: The Family Experience of Care During a Child’s BMT
Katherine Heinze, PhD
Introduction: Pediatric Blood and Marrow transplantation (BMT) is an intensive treatment that lasts months to years and places physical, emotional, and financial demands on pediatric patients and their family members. Pediatric BMT clinicians strive to provide high-quality care, which includes assisting families to navigate the BMT process. However, despite this commitment, little is known regarding factors that influence the family experience of pediatric BMT.
Methods: The family-as-group method was used to interview pediatric BMT patients and family members following BMT. Inclusion criteria included pediatric BMT patients and family members ? 6 years old, consent/assent to participant, and ability to speak English. A semi-structured interview guide was used to conduct the interviews according to Van Manen’s phenomenological human science approach. Line-by-line coding was used to construct themes. The interviews focused on families’ self-management experiences, and results presented here focus on family descriptions of experiences that lead to frustration or satisfaction.
Results: Thirteen families consented to join the study including 11 mothers, 5 fathers, 4 BMT patients, and 4 siblings. Interviews were conducted in hospital, home, and by phone. Themes included: frustration factors (sub-themes: hospital nuisances; bureaucratic systems; and incomplete communication) and satisfaction aids (sub-themes: simulating normal life; value-based accommodations; and thoughtful care providers).
Conclusions: Understanding how families perceive their pediatric BMT experience is necessary to ensure care alignment between families and clinicians. The themes identified in this study suggest ways in which care may be improved. Future research is needed to study these concepts longitudinally.
11:00am – 12:00 pm
Location: Empire A
Law, Public Health Policy, and Organizational Ethics Paper Session 8: Ethical Sensemaking in Conditions of Uncertainty: An Organizational Ethnography of Morality in a Center of Coordination for Outbreak Surveillance
Angie Boyce, PhD
In public health, ethical decision-making is routinely fraught with scientific complexity and uncertainty (Callahan and Jennings, 2002), and only further ramified in public health emergencies. Prevention-oriented programs involve many challenging moral questions (Faden and Shebaya 2010): defining populations, good health, and good public health practice; weighing statistical and unidentified lives; judging the worth of present versus future health gains; scoping legal restrictions and regulations; and balancing consequentialism with individual rights and social justice. Though the broader landscape of public health ethics is well-established, additional research is needed on the real-time ethics of decision-making about specific situations in their organizational contexts. Drawing from Weick’s (1995) theory of ethical sensemaking (mental model formation in response to an ethical event via scanning and interpreting), I present results from an organizational ethnography of food-borne disease outbreak detection and response in a federal public health agency. The moral sensibility of public health practitioners, I argue, was intimately tied to the broader organization’s form as a center of coordination for the distributed intersectoral work of outbreak surveillance and control. Practitioners collected, made sense of, and stewarded outbreak data, synthesized information as quickly as possible, and moved it through a “chain of trust” (Anderson and Edwards 2010) to take prudent actions and have positive public health impact. That doing the right thing meant doing a good job highlights the fruitfulness of augmenting professional ethics and virtue theory with thick ethnographic description of ethical decision-making under conditions of uncertainty.
11:00 am – 12:00 pm
Location: Van Horn C
Clinical Ethics Paper Session 17: Interprofessionals’ Take on Moral Resilience
Heidi Holtz, PhD
Background: Moral distress is a reality in health care. Healthcare providers face many ethical challenges that stem from the complexity of the health care environment, technological advances, patients with chronic, multi-faceted conditions and the diversity of values that shape patient and family preferences, healthcare professions, and organizational policies and practices. These ethical challenges can lead to pervasive and unrelenting moral distress. Effective strategies to mitigate the detrimental consequences of moral distress are limited. Moral resilience, however, is an emerging concept that leverages resilience concepts and research to specifically focus the moral capacities needed to transform ethical challenges and moral distress from only a negative experience to one of hope and positive forward movement.
Aim: The aim of this qualitative descriptive study was to describe common characteristics and themes of the concept of moral resilience as reported by interprofessional clinicians in healthcare.
Method: Qualitative descriptive methods were used to analyze the definitions of 207 inter-professionals’ description of moral resilience.
Results: A description of characteristics that establish a person’s trait of moral resilience included six categories: personal integrity, relational integrity, buoyancy, self-regulation, self-regard, and moral efficacy. In addition to the categories, qualities and skills that enable one to be morally resilient were described.
Conclusions: Healthcare clinicians and other professionals can use this descriptive study to understand the concept of moral resilience to guide strategies and interventions to cultivate individual capacities that contribute to a culture of ethical practice.
Rebecca Wilbanks received her PhD in 2017 from Stanford’s Program in Modern Thought and Literature and holds a BA in comparative literature and biological sciences from Cornell University. Her work engages with a number of fields, including 20th century to contemporary American literature, speculative fiction, bioethics, science and technology studies, the environmental humanities, and the history and philosophy of science. During her Hecht-Levi Fellowship, Rebecca will work with the BI Center for Bridging Infectious Diseases, Genomics & Society (BRIDGES), where she hopes to contribute to debates about the applications of gene editing technologies by comparing historical and contemporary initiatives to modify either the nonhuman environment or the human body to combat infectious disease.
Alexis Walker is a political and medical anthropologist trained in Cornell University’s Department of Science and Technology Studies, where she received her PhD in 2017. She has conducted research and authored publications on the history of health governance in the Caribbean, the politics of patenting biotechnology in the US and Europe, and the regulation of endocrine disrupters in the US and France, among other topics. As a Hecht-Levi fellow, she will be working with the Bridging Infectious Diseases, Genomics & Society (BRIDGES) project, directing a component of the pilot on Genetic Variation, Research Cohorts and Vulnerable Populations at Risk of HIV and HCV Infection. Alexis received her BA in Biology from Brown University in 2006.
Samuel Reis-Dennis received his PhD in philosophy from the University of North Carolina, Chapel Hill. He specializes in normative ethics and moral psychology, concentrating in particular on the role of negative emotions (such as anger, sadness, and disappointment) in moral life, and how an understanding of these attitudes can contribute to a better theory of responsible agency. During his Hecht-Levi fellowship, Sam is focusing on the ethics of blame as a response to medical error.
Kate Neubauer received her BS in Biochemistry from Siena College in 2008. She earned her MD at Boston University School of Medicine in 2012 and completed pediatric residency at the Johns Hopkins Hospital in 2015. She is currently a fellow in pediatric cardiology at the Johns Hopkins Hospital and aims to augment palliative care services for her patients. Her current research interests focus on communication between providers and family members, particularly in the intensive care setting with patients who would benefit from palliative care services.