Master of Bioethics c ap s to ne s ymp o sium 28 April 2020
Letter from the Director of the Capstone Experience Members and Friends of the Center for Bioethics Community: Herein, we provide a glimpse into our Master of Bioethics students’ Capstone Experiences. The Capstone Experience is comprised of attendance of the Capstone Seminar and fieldwork in the form of a Capstone Project. The work is impressive in several ways, not least of which being the students’ completion of their Capstone Projects during mitigation of the COVID-19 pandemic in the U.S. The Capstone Project allows students to delve deeply into a subject area, learning what is already known, and finding ways to apply or add to that knowledge. Capstone Seminars and Projects bring together what students have studied in classroom courses with what they discover in the field about the intricacies of messy real-world problems, making their own contribution to a topic and, in so doing, learning the practice of bioethics. The culmination of the Capstone Experience is visually presented in research posters that have been reviewed by peers, mentors, and faculty, “workshopped” in seminar, and presented in the Capstone Symposium. The written abstracts our students prepared are presented here, along with a brief biography of the student who conducted the work. Our highest aim in the MBE program is to give students a transformative education in bioethics. In its simplest form, students, Capstone mentors, and faculty together transform students’ interests into researchable questions, and lay the foundation for developing expertise in a subject area. At the same time, we seek to help students transform what they have learned into shareable knowledge disseminated through posters, abstracts, presentations, discussions with peers, weblogs, social media posts, and publications.
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The work is impressive in several ways, not least of which being the students’ completion of their Capstone Projects during mitigation of the COVID-19 pandemic in the U.S.
Due to the advent of COVID-19, students’ Capstone Experiences were also transformative in at least two unexpected ways. First, students had to adjust their goals and strategies, shifting mid-year from in-person activities to online work—which they did remarkably well. Second, they witnessed, most dramatically, the urgent need for ethical reasoning and calls for bioethics expertise to address the problems presented by a lifethreatening pandemic, confronting questions about triaging the sick, restricting liberties, allocating access to health care, rationing limited resources, and redressing the balance between individual rights and protecting population health. At its best, the Capstone Experience transforms students from learners to practitioners, from novices to experts in a particular area of interest, and from curious bystanders with questions to informed investigators exploring a landscape of potential solutions. They leave still curious questioners, but ready to conduct focused research, continue broad, lifelong learning, and contribute to knowledge in the field of bioethics. This year, we suspect many students may also have experienced an unexpected transformation in their understanding of the social value of an education in bioethics, brought about through the expansive and lasting effects of COVID-19. Throughout the course of the year, as our students have learned through their Capstone Experience, we too have learned. We hope you learn from these abstracts and biographies as well. Sincerely, Christine Mitchell Director of the Capstone Experience
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Sayf Al-Omaishi Capstone Mentor: Robert C. Green, MD, MPH Professor of Medicine, Harvard Medical School; Associate Physician, Brigham and Women’s Hospital; Director, Genomes2People Research Program Faculty Advisor: Jonathan M. Marron, MD, MPH Teaching Faculty, Harvard Medical School Center for Bioethics; Instructor in Pediatrics, Harvard Medical School; Attending Physician, Dana-Farber Cancer Institute and Boston Children’s Hospital; Ethics Associate, Boston Children’s Hospital
DNA-Based Dating App: An Ethical Way Forward? Currently, it is estimated that there are more than 1,300 recessively inherited genetic disorders. While occurring in fewer than 0.5% of live births, these recessive genetic disorders account for significant morbidity, mortality, and economic burden within the general population. Modern technological advances allow carrier screening to be used routinely, across ethnic groups, and for a wide range of recessive conditions. Recently, controversy arose regarding the role of genomics in society when a leader in the field, George Church of Harvard Medical School, proposed a DNA-based dating app. This proposed dating app aims to incorporate a user’s recessive carrier status, allowing them to avoid matching with a potential partner who carries the same recessive trait, thus reducing the likelihood of passing a genetic disease to a future child. This Capstone explored the community pushback against the use of genetic technology in the dating app context. Identified ethical concerns centered around several key categories: eugenics, autonomy, privacy, and justice. These concerns regarding the implementation of this app were addressed, and an ethical analysis was conducted on the merits of each. An ethical path forward takes public concerns into consideration in implementing genetic technology within a dating app context. This includes promoting an understanding of genetic risks through widespread counseling initiatives, allowing for individual choice in filter settings, making privacy of genetic information paramount, and minimizing barriers to access. Sayf Al-Omaishi, BSc, received his BSc in biochemistry from McGill University in Montreal, Canada. As an undergraduate, he worked at McGill’s Rosalind and Morris Goodman Cancer Research Centre where he completed projects studying noncoding and tumor suppressor mutations in melanoma. He is particularly interested in the ethical, legal, and social implications of emerging genomic technologies in clinical and commercial contexts. Sayf also focuses on global health and human rights, especially on improving health care outcomes for disadvantaged populations in the Middle East. After completing his MBE, he hopes to advocate for ethical innovation in health care and biotechnology. 2
Alicia Andersen Capstone Mentor: Barbara Bierer, MD Professor of Medicine (Pediatrics), Harvard Medical School; Senior Physician and Faculty Director, Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital; Director, Harvard Catalyst Regulatory Foundations, Law and Ethics Program Faculty Advisor: Rebecca H. Li, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Executive Director, Vivli Center for Global Clinical Research Data
Contraceptive Management in Clinical Research Involving Adolescents Clinical research involving pediatric patients and adolescents is essential to furthering our understanding of drug safety and efficacy in these populations. There is no commonly accepted practice or guidance regarding management of the risk of pregnancy through the use of contraception by adolescent populations who participate in clinical research. Any practice regarding contraception and/ or abstinence must consider the various social, developmental, and cultural factors that may allow or impede a patient and his or her family from enrolling in a clinical trial. In order to assess the current landscape of pregnancy prevention methodology, the Capstone identified 122 protocols from clinicaltrials.gov. Two reviewers coded each protocol on various dimensions, including the presence of contraceptive language in eligibility criteria, definitions of effective contraception, and ongoing pregnancy testing, among others. Findings demonstrated that while many protocols mandated use of one or more contraceptive methods, several did not clarify what is meant by an “effective method.” Similarly, protocols that required a negative pregnancy test to meet study inclusion criteria were inconsistent regarding ongoing pregnancy testing as a condition of continued enrollment. The rationale for these and other inconsistencies was not often clearly addressed. Application of contraceptive requirements for both male and female patients should be tiered according to drug risk category and consistently applied in clinical research involving adolescents. Future directions include creation of a guide to explain the components of required contraceptive behavior and pregnancy testing for adolescents who wish to participate in clinical trials. Alicia Andersen, BA, received her BA in human biology with a minor in psychology from Stanford University. Prior to joining the MBE program, she managed phase III clinical trials in oncology and researched factors that contribute to timely clinical trial recruitment and performance. She continues to be interested in the ethical foundations of human participants research, the regulatory challenges posed by novel sources of de-identified research data, and potential impacts on individual privacy and willingness to participate. She plans to pursue a career applying the ethical frameworks learned in the MBE to improve academic and industry research initiatives. 3
Mary Brennan Capstone Mentor: Christy L. Cummings, MD Assistant Professor of Pediatrics, Harvard Medical School; Attending Neonatologist, Director of Medical Ethics & Humanities in Newborn Medicine, and Ethics Associate, Boston Children’s Hospital Faculty Advisor: Melissa Uveges, PhD, MA, RN Teaching Faculty and Postdoctoral Research Fellow, Harvard Medical School Center for Bioethics, Research Fellow, Global Health and Social Medicine, Harvard Medical School
Development and Validation of the Pediatric Ethics & Professionalism Assessment Tool (Pedi-EPAT) The goal of this Capstone was to improve the applied ethical behavior of trainees through direct evaluation and feedback. The project focused on the validation of part of a larger group of educational tools designed to help improve ethics and professionalism knowledge and behavior of pediatric medical trainees. The ethics and professionalism training was expanded with the development and validation of another assessment tool, the Pediatric Ethics & Professionalism Assessment Tool (PediEPAT), following the development of an online curriculum for trainees in neonatology through OPENPediatricsTM. The Pedi-EPAT evaluates applied ethical behavior and professionalism of trainees in pediatric and pediatric subspecialties. A two-round modified Delphi method was used to develop the items of the tool. Tool validation has begun; raters will view video simulations of trainees leading family meetings in the inpatient pediatric clinical setting in order to evaluate the items of the tool and determine inter-rater reliability.
Mary Brennan, RN, BSN, received her bachelor’s degree from Saint Anselm College and is a registered nurse who specializes in caring for children in intensive care settings. Prior to pursuing her MBE, she worked in pediatric intensive care units as both a nurse and an ECMO. Mary is interested in ethical issues related to parent and family decision-making in critical care settings and plans to pursue a PhD in nursing.
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Beatrice (Bea) Brown Capstone Mentors: I. Glenn Cohen, JD Faculty Director, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics; James A. Attwood and Leslie Williams Professor of Law, Harvard Law School Carmel Shachar, JD, MPH Executive Director, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School Faculty Advisor: Brendan Abel, JD Teaching Faculty, Harvard Medical School Center for Bioethics; Director of Advocacy & Government Relations, Massachusetts Medical Society
Redefining Healing: Arriving at a New Argument for a Constitutional Right to Physician-Assisted Death Eight states and Washington, D.C., have legalized physician-assisted death (PAD) through death with dignity laws. However, various professional medical associations remain opposed to PAD; most notably, the American Medical Association (AMA), which holds that PAD is “fundamentally incompatible with the physician’s role as healer.” This conflict between professional ethics and state laws legalizing PAD creates a moral dilemma for physicians in states where PAD has been legalized. Although there is literature on whether PAD conflicts with professional integrity and ethics, none of this work has focused on what it means to heal. This Capstone sought to redefine healing as follows: to heal is to allow the patient to transcend suffering through either 1) a return to wholeness, or 2) the removal of this suffering through death. Such a definition reconciles the practice of PAD with the physician’s role as healer, and allows physicians to fulfill their obligation of non-abandonment to patients approaching the end of their life. This new definition of healing is then used to argue that there should be a constitutional right to PAD on equal protection grounds, rebutting the US Supreme Court’s distinction between withdrawal of life-sustaining treatment and PAD in Vacco v. Quill on three philosophical grounds: intent, causation, and professional integrity. As medical capabilities continue to advance, future work should explore the implications of this new definition of healing for the practice of medicine more broadly. Beatrice (Bea) Brown, BA, received her BA in ethics, politics, & economics from Yale University. At Yale, she was the principal flutist of multiple musical ensembles. During her year in the MBE program, Bea was a student fellow at the Petrie-Flom Center at Harvard Law School and was selected as a participant for the Medical Review Auschwitz Scholarship Program. Her interests in bioethics include moral and legal issues surrounding end-oflife care and reproductive rights. Following her MBE, Bea will work as a research assistant in the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham & Women’s Hospital and Harvard Medical School (PORTAL) prior to attending law school. 5
Jonathan Elias Chernoguz Capstone Mentor: Alicia Ely Yamin, JD, MPH Adjunct Lecturer on Global Health and Population, Harvard TH Chan School of Public Health; Affiliated Faculty, Harvard Medical School Department of Global Health and Social Medicine; Senior Fellow in Global Health and Rights, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School Faculty Advisor: David Sontag, JD, MBE Teaching Faculty, Harvard Medical School Center for Bioethics; Lecturer on Medicine, Harvard Medical School; Managing General Counsel; Beth Israel Lahey Health; CoChair, Ethics Advisory Committee, Beth Israel Deaconess Medical Center
Heritable Gene Editing and Human Rights: A Policy Brief for the Center for Reproductive Rights (CRR) Currently, there is a lack of both advocacy and regulation surrounding heritable gene editing. The purpose of this Capstone was to provide an information brief and oral presentation for the international Center for Reproductive Rights (CRR) to support advocacy of global regulations and policies pertaining to inheritable genetic modification practices. The information brief explained scientific and ethical concepts relevant to heritable genetic modifications and aims to assist CRR staff in identifying and engaging with the relevant questions pertaining to this issue. The project addressed human rights laws and ethical principles CRR has identified as potentially relevant to future advocacy in different iterations and drafts of the brief throughout the semester. Future directions include continued research of the international human rights implications of heritable genetic modification technology in order to develop a more substantial policy advocacy tool for CRR and for the United Nations Office of the High Commissioner for Human Rights (OHCHR), more broadly.
Jonathan Elias Chernoguz, BA, received his BA from the University of California, Berkeley, in political economy and public policy with a concentration in the political economy of emerging biotechnologies. Jonathan works in communication roles at the Center for Genetics and Society and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. His academic background, coupled with his work experience, has focused his interest on developing health law and policy through a bioethical lens. His achievements include organizing Being Human in a Biotech Age, a film series at UC Berkeley. He was a recipient of the California Alumni Association Leadership Award. Following the MBE program, Jonathan plans to attend law school. 6
Jane Fallis Cooper Capstone Mentor: John Wesley Boyd, MD, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Associate Professor of Psychiatry, Harvard Medical School; Co-Director, Human Rights and Asylum Clinic, Cambridge Health Alliance Faculty Advisor: Louise P. King, MD, JD Director of Reproductive Ethics, Harvard Medical School Center for Bioethics; Assistant Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School; Surgeon, Division of Minimally Invasive Surgery, Brigham and Women’s Hospital
The Role of Psychological and Medical Evaluations in the Asylum Process, Ethics, and the Law Despite the right to seek asylum being enshrined in both American and international law, it is frequently a point of political contention. Currently, the right to be granted asylum is restricted to migrants who have experienced persecution based on race, religion, nationality, political opinion, or membership in a particular social group. Psychological and/or medical evaluations of asylum seekers have become increasingly important in supporting asylum seekers’ cases as recent US legal decisions have attempted to narrow the grounds under which individuals can seek asylum. These evaluations are conducted by clinicians (including physicians, psychologists, social workers, and others) and submitted as affidavits. In-person testimony by the experts is also sometimes necessary. These affidavits document the physical and psychological effects of trauma, including (when present) post-traumatic stress disorder (PTSD) and major depressive disorder (MDD), and have been strongly correlated with increased rates of being granted asylum. This Capstone included a practical component in accompanying an accomplished clinical psychiatrist conducting ten asylum evaluations, and a written paper exploring the benefits and drawbacks of these forensic evaluations. An argument for a professional obligation to provide these psychological/medical evaluations is made through an exploration of the ethical principles of autonomy, beneficence, nonmaleficence, and justice. Finally, the impact of secondary trauma on, and reciprocal obligations to, participating clinicians is discussed. Jane Fallis Cooper, BScH, received her BS (honors) in biology from Queen’s University, Kingston, Ontario, Canada. As an undergraduate, Jane worked with Toronto’s University Health Network bioethics program, publishing on the subject of patient behavioral contracts. For this work, she received funding from an Arts and Science Research Fund grant. She also volunteered with Corrections Canada, where she organized job training workshops for people in federal prisons. Jane’s current interests include environmental ethics, human rights, and prison reform. Beginning in the fall of 2020, Jane will attend law school at the University of Toronto.
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Kyle Fitzpatrick Capstone Mentor: Joel Thompson, JD Managing Attorney and Clinical Instructor, Harvard Prison Legal Assistance Project, Harvard Law School Faculty Advisor: John Wesley Boyd, MD, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Associate Professor of Psychiatry, Harvard Medical School; Co-Director, Human Rights and Asylum Clinic, Cambridge Health Alliance
Solitary Confinement in Massachusetts: Policy, Practice, and Philosophy Solitary confinement is a controversial practice in Massachusetts. Some think the practice is necessary for maintaining safe prisons, while others see it as a form of torture due to the significant negative health outcomes associated with it. The goal of this Capstone was to analyze Massachusetts’ solitary confinement policies and practices throughout history in order to characterize its current practice and to determine if further reform is needed. This project began with a review of historical and contemporary materials, including case files kept by the Harvard Prison Legal Assistance Project at Harvard Law School. This work revealed that in the 1800s, solitary confinement was implemented in the Commonwealth’s criminal justice system in order to improve prisoner health, rehabilitate prisoners, and to make them economically useful. In present-day use in Massachusetts, however, it is now a form of Foucauldian discipline that strives, but fails, to motivate behavioral changes merely in order to keep prisons safe. Furthermore, many of the issues that made solitary confinement problematic in the early days of its use, such as negative health outcomes and excessively long periods of isolation, continue to be causes for concern today. This study therefore concluded that solitary confinement practices have not evolved in accordance with contemporary societal norms and that further reform is urgently needed.
Kyle Fitzpatrick, BA, received his BA in psychology from Guilford College, UK. He previously worked as a surgical technologist in the United States military, and was an intern at the Yale Interdisciplinary Center for Bioethics at Yale University. Kyle is interested in the ethics of correctional medicine, mental health care in the criminal justice system, and military medicine. In the fall, he will continue his education in the fields of psychology and public health in a PhD program at Michigan State University. His research will focus on the mental health of vulnerable populations.
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Carolyn Friedhoff Capstone Mentors: Bizu Gelaye, PhD, MPH Teaching Faculty and Co-Director of Research Ethics, Harvard Medical School Center for Bioethics; Assistant Professor of Psychiatry, Massachusetts General Hospital and Harvard Medical School; Assistant Professor of Psychiatric Epidemiology, Harvard T. H. Chan School of Public Health Elizabeth Levey, MD Instructor in Psychiatry, Harvard Medical School; Child, Adolescent, & Adult Psychiatrist, Chester M Pierce, MD Division of Global Psychiatry, Massachusetts General Hospital; Visiting Scientist, Harvard T.H. Chan School of Public Health Faculty Advisor: Anthony Breu, MD Teaching Faculty, Harvard Medical School Center for Bioethics; Assistant Professor in Medicine, Harvard Medical School; Director of Resident Education and Hospitalist, VA Boston Healthcare System
Desire for Greater Autonomy Amongst Adolescent Mothers in Peru Individual autonomy is a value central to North American and Western European medicine and ethics. However, bioethicists often caution researchers and health care providers against transposing that value into Latin American health care for two reasons. The first is that most Latin American patients prefer those highest in the social hierarchy, such as elders and physicians, make decisions on their behalf. The second is that autonomy is not an authentic or traditional value in Latin American culture, and should, therefore, be rejected as a form of foreign cultural imposition. However, there are Latin Americans who value autonomy, and deserve to have their values supported by their health care providers. This project found that adolescent mothers in Peru desire greater autonomy, identified the areas of their lives in which they desire that autonomy, and investigated the obstacles they face in achieving it. Specifically, adolescent Peruvian mothers want greater control over the way they live their lives and more independence in decision-making.. Cultural barriers to adolescent mothers gaining greater autonomy include traditional Latin American values that stem from a culture of interdependence. The challenge of how or whether to support an adolescent mother who values autonomy is at odds with significant parts of her family’s culture becomes even more difficult when she depends on her family’s emotional and financial support. Carolyn Friedhoff, BA, received her bachelor’s degree in philosophy and cognitive science from Carleton College. She has experimented with a variety of roles, including that of freelance ballet and modern dancer, Indian textile gallery attendant, On Being podcast editor, and clinical trial research assistant and recruiter. She is currently a nontraditional pre-medical student with both medical and bioethical interests in psychiatry, addiction medicine, and neurology. Her Capstone reflects her plans to work in global health and to honor her heritage by advancing the health of Latin American people.
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Sydney Goldberg Capstone Mentor: Brian Cummings, MD Assistant Professor of Pediatrics, Harvard Medical School; Attending in Pediatric Critical Care Medicine; Associate Chief Quality Officer, Center for Quality and Safety and Chair, Pediatric Ethics Committee, Massachusetts General Hospital Faculty Advisor: Anthony Breu, MD Teaching Faculty, Harvard Medical School Center for Bioethics; Assistant Professor of Medicine, Harvard Medical School; Director of Resident Education and Hospitalist, VA Boston Healthcare System
Young Adults and Advance Care Planning: A Promising Path Forward with Social Networking Sites Advance care planning (ACP) is an ongoing topic in the United States health care system, particularly in bioethical conversations. Although the process of advance care planning has gained significant traction in the United States over the last few decades, it has not widely engaged young adults. This lack of preparedness, however, is a major public health challenge because the cause of death for young adults is most frequently unintentional accidents that leave no time for continued conversations about desired care. Given this need, new methods of engagement to effectively reach the young adult population are needed. This Capstone addressed advance care planning in young adults by proposing that a campaign piloted on multiple social networking sites (SNS) could be an effective intervention to reach this population and influence engagement with ACP and conducted research on the feasibility of such a project. Young adults spend substantial amounts of time on SNS and these sites, therefore, are important in shaping their identities. The influence that SNS have on young adults makes this medium the perfect avenue to reach this specific population. Evidence from previous public-health related SNS campaigns highlights how SNS has been effective in creating conversations and motivating behavioral changes in other stigmatized health-related topics. Given this evidence and the vast amount of time that the target population is already spending on this platform, social networking sites are ideal platforms for engaging young adults in advance care planning. Sydney Goldberg, BA, received her bachelor’s degree in bioethics from the University of Rochester. As an undergraduate, she conducted research on minors’ involvement in their health care decisions which culminated in a thesis exploring the potential to use tests for medical competency in this population. Sydney is particularly interested in ethical issues that arise at the intersection of clinical care and policy. Following the MBE program, she will work as a research assistant in Massachusetts General Hospital’s Health Policy Research Center before applying to law school.
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Leanne Homan Capstone Mentors: Wendy McHugh, RN, MS, Clinical Nurse Ethicist and Member of Ethics Advisory Committee, Beth Israel Deaconess Medical Center Martha Jurchak, PhD, RN, Teaching Faculty, Harvard Medical School Center for Bioethics; Executive Director, Ethics Service, and Co-Chair, Ethics Committee, Brigham and Women’s Hospital Aimee Milliken, PhD, RN, HEC-C, Teaching Faculty, Harvard Medical School Center for Bioethics; Clinical Ethicist, Nurse Scientist, and Director of Research, Brigham and Women’s Hospital Faculty Advisor: Melissa Uveges, PhD, MA, RN Teaching Faculty and Postdoctoral Research Fellow, Harvard Medical School Center for Bioethics; Research Fellow, Global Health and Social Medicine, Harvard Medical School
Understanding the Impact of Unit-Based Ethics Rounds: An Integrative Literature Review Health care providers frequently encounter ethically challenging situations. For decades, clinical ethicists have constructed, implemented, and revised clinical ethics support programs, striving for the best approach to help providers understand and cope with these challenges. One type of clinical ethics support frequently identified as being helpful is unit-based ethics rounds, however empirical data is limited. This Capstone was comprised of a literature review of the empirical evidence supporting use of unit-based ethics rounds, identified alternative clinical ethics support activities similar to unit-based ethics rounds, informed the practice of clinical ethics support, and identified areas of focus for further research. Based on a qualitative analysis of forty papers, two main themes were identified: 1) facilitators and barriers to unitbased ethics rounds; and 2) impact of unit-based ethics rounds on personal development and professional relationships. This review revealed unit-based ethics rounds have a positive impact on health care professionals’ ability to navigate ethical challenges. However, some ethical issues continue to pose challenges and create frustration for health care providers. To complement the literature review, fieldwork was conducted at Beth Israel Deaconess Medical Center and Brigham and Women’s Hospital’s ethics support services to experience unit-based ethics rounds gaining an understanding of the structure and framework utilized at each facility. Leanne Homan, BSN, RN, CCRN, CEN, received her AAS from North Shore Community College in 2003 and her BSN from Endicott College in 2018. Leanne is a registered nurse at Massachusetts General Hospital with nearly seventeen years of clinical work experience in both critical care and emergency nursing. Her primary interests in bioethics include clinical ethics, health law and policy, and racial disparities in clinical trial research. Leanne plans to use her education in bioethics to improve formal ethical training programs for health care providers to assist in the prevention and reduction of caregivers’ moral distress. 11
Taiwo Iyiola Capstone Mentor: K. Babu Krishnamurthy, MD, MBE Core Faculty, Essentials of the Profession I and II, Harvard Medical School; Director of Epilepsy, Lead of Ethics (Neurology), and Member of the Ethics Support Service, St. Elizabeth’s Medical Center Faculty Advisor: Anthony Breu, MD Teaching Faculty, Harvard Medical School Center for Bioethics; Assistant Professor of Medicine, Harvard Medical School; Director of Resident Education and Hospitalist, VA Boston Healthcare System
Assessing the Benefits of a Scripted Orientation to Patients, Families, and Staff In MICU The intensive care unit (ICU) is the most complex and sophisticated center of care in any hospital. Over the years, medical advancements have made the ICU crucial to the recovery of many patients. Yet, it can be an overwhelming environment to many patients and their relatives, who do not understand how to navigate it. Equally, ICU patients are often unable to make decisions for themselves thereby necessitating family and relatives to assume responsibility for decision-making. To perform this function properly, the medical team has the moral and professional obligation to orientate patients and families to the ICU environment and its functions. This Capstone focused on developing an orientation script for patients and families entering the ICU. The script provides a clear, coordinated, and consistent source of information for the patients and families on their immediate needs and what to expect as they navigate the ICU. The current Coronavirus pandemic adds a unique challenge to patient/family orientation and education in the ICU and makes the need for flawless information exchange between the health care providers and families even more important.
Taiwo Iyiola, MBBS, received his MBBS degree from the Ladoke Akintola University of Technology, Ogbomosho, Nigeria, and completed a postgraduate diploma in HIV management at Stellenbosch University, South Africa. He is a general medical physician who has worked in different capacities in many hospitals in South Africa and Nigeria for more than a decade. He is interested in bioethical issues arising from clinical care delivery to low-income, resource-poor, high-disease burden areas. He will begin a doctoral program in global health at the College of Graduate Health Studies, A.T. Still University in Arizona, after completing the MBE program.
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Yechaan (Eric) Joo Capstone Mentors: Martin McKneally, MD, PhD Professor Emeritus of Surgery, University of Toronto, the Joint Centre for Bioethics and Toronto General Hospital Richard Whyte, MD, MBA Professor of Surgery, Harvard Medical School; Vice Chair of Surgery, Beth Israel Deaconess Medical Center Faculty Advisor: Jon Wesley Boyd, MD, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Associate Professor of Psychiatry, Harvard Medical School; Co-Director, Human Rights and Asylum Clinic, Cambridge Health Alliance
Qualitative/Quantitative Assessment of Ethics Morbidity and Mortality Conferences in Surgical Education The surgical morbidity and mortality (M&M) conference, colloquially referred to as the “golden hour� of surgical education, is a meeting for faculty and trainees to discuss adverse events and errors that have occurred during surgery, and to share surgical knowledge and skills. The ethics M&M conference addresses the ethics that surround those adverse events and errors and promotes reflective thinking to improve decisionmaking. At Beth Israel Deaconess Medical Center (BIDMC), four ethics M&M conferences were held between August 2019 and January 2020. This Capstone sought to assess whether ethics M&M conferences 1) help residents develop conceptual frameworks for addressing ethical issues in surgery, 2) strengthen familiarity with ethics terminology, and/ or 3) encourage bioethics discourse. Online surveys and semi-structured interviews were conducted with general surgery residents at BIDMC who attended at least one ethics M&M conference. Results from the surveys and responses from the interviews show that almost all respondents and interviewees value ethics M&M conferences as an effective surgical education tool. Due to the COVID-19 pandemic, future ethics M&M conferences at the BIDMC were cancelled and the response rate for the survey and phone interview was less than 25%. However, these promising results may promote the introduction of ethics M&M conferences at other health care institutions and further enrich the surgical learning environment. Yechaan (Eric) Joo, MPH, earned his BS in chemistry from Boston College, and his MPH with a concentration in environmental health from the Harvard T.H. Chan School of Public Health. For his MPH practicum, Yechaan investigated the impact of passive smoke exposure on bone mineral density in adolescents at the Maine Medical Center Research Institute. Yechaan believes that bioethics is a linchpin that links medicine, public health, and research. After graduation, Yechaan plans to attend medical school and to integrate his background and experience in public health and bioethics to practice medicine that heals patients, bridges communities, and transforms society. 13
Melina Kim Capstone Mentor: Jonathan Marron, MD, MPH Teaching Faculty, Harvard Medical School Center for Bioethics; Instructor in Pediatrics, Harvard Medical School; Attending Physician, Dana-Farber Cancer Institute and Boston Children’s Hospital; Ethics Associate, Boston Children’s Hospital Faculty Advisor: Melissa Abraham, PhD, MSc Teaching Faculty, Harvard Medical School Center for Bioethics; Assistant Professor of Psychology, Harvard Medical School Department of Psychiatry; Psychologist, Massachusetts General Hospital Department of Psychiatry and Division of Clinical Research
Health Care Providers’ Perspectives on Utilization of Genomic Sequencing in Clinical Practice With decreasing costs and increased availability of genome sequencing, health care providers are increasingly considering use of these services. Due to the potential risks and uncertainty of genomic data, many ethical questions arise not only for patients, but also for providers. However, limited research has been conducted analyzing providers’ views on, and understanding of, genomic sequencing: its role, uses, and limitations. There is also limited research on how providers discuss these issues with patients and their families. As providers play a crucial role in patients’ experiences with genomic services, it is important to gain a better understanding of providers’ perspectives. This Capstone had three main objectives: First, to better understand providers’ views and practices regarding genomic sequencing; second, to identify ethical challenges that providers face when integrating genomics into clinical practice; and third, to examine similarities and differences among different providers who request genomic sequencing in different scenarios. Providers’ perspectives on genomic sequencing for patient care were examined through a review of the literature and identification of common themes and messages. The results revealed themes including variable knowledge and comfort with genetic concepts, and their specific applications to clinical practice. The results also revealed practical challenges such as time constraints during patient visits and ethical dilemmas surrounding unclear clinical benefits and absence of clinical guidelines. Further study in this complex, evolving topic is recommended to ensure ethical use of genomic sequencing in medicine. Melina Kim, BA, EdM, received her BA from Columbia University in East Asian studies and visual arts, and her EdM from Harvard Graduate School of Education in technology, innovation, and education. During her time at Harvard, she worked in the Office for Sponsored Programs, where she managed sponsored research projects from the beginning stage through closeout, and attained a Research Excellence in Administration certificate. She also served as the vice chair for diversity at the Harvard Graduate Council. She is particularly interested in bioethical issues related to decision-making, informed consent, and emerging technologies in dentistry. After graduation, she will attend dental school. 14
Nathan Ko Capstone Mentor: Lisa Moses, VMD, DACVIM, CVMA Teaching Faculty, Harvard Medical School Center for Bioethics; Research Fellow, Global Health and Social Medicine, Harvard Medical School; Lead, Angell Animal Medical Center Pain and Palliative Care Service Faculty Advisor: Anthony Breu, MD Teaching Faculty, Harvard Medical School Center for Bioethics; Assistant Professor of Medicine, Harvard Medical School; Director of Resident Education and Hospitalist, VA Boston Healthcare System
Medical Decisions on Behalf of Animals: Towards a More Patient–Centered Approach Medical interventions currently available for animal patients in a veterinary clinical setting often require practitioners and the patients’ human guardians to deliberate on the most appropriate course of treatment. During decision-making conversations, conflict can arise about what is best for, or what is owed to, the animal in question, resulting in moral distress for veterinary providers and potential harm to the animal. This Capstone examined whether a shift towards patient-centered veterinary medicine based on entangled empathy might help to manage such conflicts. Entangled empathy involves acknowledgement of the relationships humans are in with others, including other species, in order to attend more responsively and responsibly to a nonhuman animal’s well–being. When applied to an end-of-life case concerning a geriatric golden retriever with advanced lymphoma, two different standards of decision-making in human medicine have merit when appropriately modified to veterinary practice. Those are substituted judgment and shared decision-making. However, shared decision–making involves placing both the veterinarian and client in the position of patient advocate, which better reduces provider moral distress and minimizes patient harms. Use of shared decision–making in veterinary clinical settings could assist providers seeking to practice a more patient–centered method of care.
Nathan Ko, BA received his BA in biology from Wesleyan University. Nathan is a story time assistant at the Harvard Museum of Natural History; and a violinist/vocalist in the “progedelic folk rock” band Cactus Island. Fascinated with flora and fauna from an early age, he has decided to use his ethics education in the service of animals, and is experimenting with applying ethical frameworks from human medicine to veterinary clinical practice. After graduating, he plans to work as a veterinary assistant before applying to veterinary school.
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Isabel Legarda Capstone Mentor: Louise P. King, MD, JD Director of Reproductive Ethics, Harvard Medical School Center for Bioethics; Assistant Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School; Surgeon, Division of Minimally Invasive Surgery, Brigham and Women’s Hospital Faculty Advisor: Robert D. Truog, MD Director, Harvard Medical School Center for Bioethics, Frances Glessner Lee Professor of Medical Ethics, Professor of Anaesthesia and Pediatrics, Harvard Medical School; Senior Associate in Critical Care Medicine, Boston Children’s Hospital
How to Teach an Ethics Class: Case Content Selection for Case-Based Ethics Education This Capstone explored whether the role and value of narrative in ethics pedagogy, and case narratives in particular, can be optimized in a pre-clerkship course in medical ethics and professionalism at Harvard Medical School. A literature review was conducted, a syllabus was developed, and instruction was provided to undergraduate and medical students. Findings included the implementation of case-based pedagogy since at least the time of Aristotle and has long been a staple of medical ethics education. However, in terms of knowledge acquisition, sense-making, and perceived competency, not all cases achieve equal benefit in subsequent ethical decision-making. Case content may be a significant determinant of the pedagogical value of case-based learning. Emotionally charged features, for instance, may aid recall, but hinder discussion. Clinically salient components may enhance perceptions of relevance for medical students but focus their ethical reasoning process too narrowly. In reproductive ethics in particular, careful case selection that includes content that illuminates conflicting interests and requires nuanced clinical decision-making and analysis, appears to allow for richer discussion and greater perceived inclusivity of all viewpoints than cases without such clinical features. Developing an effective ethics curriculum for medical students demands awareness of the narrative, experiential, and reflective aspects of case-based learning, with special attention to the importance of case content selection. Isabel Legarda, MD, completed an undergraduate degree in English and American literature and language at Harvard College, a master’s degree at Tufts University in child development, a medical degree at New York Medical College, and a residency in insert specialty at Brigham and Women’s Hospital. She is an anesthesiologist at Massachusetts General Hospital. She is interested in medical humanities, narrative ethics, clinical ethics, and ethics education. She plans to join the medical ethics faculty at Harvard Medical School upon completion of the Master of Bioethics Program.
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Dian Liu Capstone Mentor: Rebecca Li, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Executive Director, Vivli Center for Global Clinical Research Data Faculty Advisor: Natasha Aljalian, MBE, JD, LLM Teaching Faculty, Harvard Medical School Center for Bioethics; Senior Associate Director, License Oversight & Enforcement, Office of Technology Development, Harvard University
Cultivating Reciprocity in Rare Disease Data Sharing This Capstone addressed rare disease patients’ values and perspectives. Although individually rare, more than 7,000 identified rare diseases affect one in ten people in the United States. Ninety-five percent of these diseases do not have FDA-approved treatments. Currently, stakeholders, including physicians, researchers, funding agencies, and pharmaceutical companies, lack consensus to guide rare disease data sharing. Input from patients has been limited. The benefits of patient-level data sharing to further scientific knowledge and improve patient health have been increasingly recognized. However, inconsistent policy standards have led to emphasis on informed consent and data anonymization, neglecting rare disease patients’ unique risks, while simultaneously creating data sharing barriers. For rare diseases for which recruiting research participants is extremely difficult, data sharing can play a crucial role in enhancing disease understanding and accelerating timely new medical interventions. The project findings highlight rare disease patients’ priority and willingness to have their data contributions leveraged for research. However, the power differential between patients and other stakeholders also deters patients from asserting their opinions. In fact, rare disease patients have tremendous trust in academic investigators and federal agencies. They are willing to collaborate for a cure and share data in a transparent and accountable manner. Ultimately, patients value shared decision-making and aim to cultivate reciprocity in data sharing practices. This project sheds light on the much-needed patients’ voices and helps rare disease communities participate in ethical discussions to shape effective data sharing strategies. Dian Liu, BA, received her BA in African studies from Mount Holyoke College and executive coaching certificate from Columbia University. She is a patient advocate and business advisor, and has collaborated with Grünenthal Group, a pharmaceutical company headquartered in Germany, to create patient-centered clinical trials. Her interest in bioethics focuses on patient experience and coproduction in research. Prior to working in health care, she gained experience in the arts, investment banking, and entrepreneurship. She founded several companies, including Dance United, an after-school program for children from low-income neighborhoods in New York City that teaches life skills through dance. 17
Michael Martin Capstone Mentor: Stephen Wood MS, ACNP-BC Research Fellow, Department of Global Health and Social Medicine, Harvard Medical School; Nurse Practitioner, Winchester Hospital Faculty Advisor: Aimee Milliken PhD, RN, HEC-C Teaching Faculty, Harvard Medical School Center for Bioethics; Clinical Ethicist, Nurse Scientist, and Director of Research, Brigham and Women’s Hospital
Enhancing Bioethics Education through Simulation Bioethics education is typically provided using didactic methods, including lectures, case reviews, and analysis. Simulation offers an alternative means of providing bioethics education. However, ethics simulation has been discussed less extensively in professional publications. This Capstone focused on exploring the existing literature supporting the use of simulation as an applied method of providing bioethics education. Current research demonstrates that ethics simulation benefits providers and students of various health professions by enhancing their ability to identify ethical conflicts, explore value origins associated with these conflicts, and provide them with the skills and confidence necessary to address them. Disaster relief, rationing, and moral distress are ethical themes that emerge when caring for patients who fail to meet the criteria for ECMO therapy (extracorporeal membrane oxygenation). Rather than focusing on the more technical aspects of this complex therapy, an ethics simulation was developed with the intent of enhancing the ability of health care providers to engage in goals of care conversations with loved ones. Emphasis was placed on the development of a story that portrayed a multitude of values encountered by various stakeholders during goals of care conversations. Debriefing questions were structured with the intent of eliciting such values. When applied according to professional standards at simulation centers, ethics simulation has the potential to enhance bioethics education and practice for providers and students of various health professions.
Michael Martin, BSN, RN, CCRN received his AAS in nursing from Central Maine Medical Center School of Nursing and his BSN from the University of Maine, Augusta. He is a registered nurse with nearly twenty years of experience in acute care settings, specializing in adult critical care. Michael has held prior leadership roles in education and professional practice committees and has extensive experience training nurses in adult critical care settings. Michael’s primary interests in the field of bioethics include clinical ethics, health policy, and ethics education for nurses. Michael intends to continue his education, combining his interests in nursing and bioethics.
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Elaine C. Meyer Capstone Mentor: Jess Miner, PhD Executive Director, Harvard University Edmond J. Safra Center for Ethics Christopher Robichaud, PhD Director of Pedagogical Innovation, Harvard University Edmond J. Safra Center for Ethics; Senior Lecturer in Ethics and Public Policy, Harvard Kennedy School Faculty Advisor: Christine Mitchell, RN, MS, MTS Executive Director, Harvard Medical School Center for Bioethics; Director, Master of Bioethics Capstone Program; Lecturer on Global Health and Social Medicine, Harvard Medical School
Advancing Everyday Clinical Ethics Education through Innovative Simulation Most of clinical ethics focuses on dramatic, media-fueled health care issues. By contrast, everyday clinical ethics unfolds within the moral space of everyday encounters between clinicians, patients, and families. Even experienced, capable clinicians can be unaware of ethical dimensions of everyday care or uncomfortable in this realm of practice. Through literature review and semi-structured interviews, this Capstone defined everyday clinical ethics, identified core competencies and skills, and generated a range of simulation topics to advance everyday ethics education. Simulation-based educational approaches offer valuable learning and practice opportunities across a range of everyday ethical challenges before clinicians confront them in actual practice, offering the promise of improving care, building everyday ethics capacity, minimizing moral distress, and contributing to meaningful preventive ethics. A convenience sample of twenty interprofessional bioethicists participating in the Clinical Ethics Consortium series, organized by the Harvard Medical School Center for Bioethics, completed interviews (12 females (60%), 8 males (40%); total experience 560 years, x=28, range 8-50; 100% white). Through inductive thematic analysis, several core competencies and skills themes were identified: Values and Self-Reflective Capacity; Perspective-Taking and Empathic Presence; Communication and Relational Skills; and an Ethical Toolbox comprised of Ethical Awareness, Ethical Knowledge & Literacy; Ethical Analytic & Action Skills; and Organizational Savvy. The range of suggestions for simulation scenarios included: not heeding patient concerns; highproduction pressures; resource allocation; institutional rule adherence and prohibition; values, preferences and decision-making; disparagement of patients/families; and social media dilemmas. Elaine C. Meyer, PhD, RN, received her BSN and MSN from the University of Pennsylvania and PhD from University of Rhode Island. She is a psychologist at Boston Children’s Hospital, an associate professor of psychology at Harvard Medical School, a fellow of the Society for Simulation in Healthcare, and has published over 100 peer-reviewed articles. Her work emphasizes patient/family perspectives and priorities, end-of-life care, and simulation education. She looks forward to teaching, consulting in clinical and research partnerships, and writing about the interface of everyday ethics, autism and neurodiversity, and innovative simulation. 19
Zamina Mithani Capstone Mentor: Abigail Judge, PhD Instructor in Psychology, Harvard Medical School Department of Psychiatry; Clinical and Child Forensic Psychologist, Massachusetts General Hospital Nhi-Ha Trinh, MD, MPH Associate Director, HMS Holmes Society; Assistant Professor of Psychiatry, Director of Center for Diversity, Director of Multicultural Studies, Director of Clinical Services in the Depression Clinical and Research Program, Massachusetts General Hospital Faculty Advisor: Kelsey Berry, PhD Postdoctoral Research Fellow, Harvard Medical School Center for Bioethics; Research Fellow, Global Health and Social Medicine, Harvard Medical School
The Ethics of Mental Health Care and Substance Abuse Treatment for Women Affected by Commercial Sexual Exploitation Women affected by commercial sexual exploitation (CSE)—a term referring to the continuum of sex trading, prostitution, and sex trafficking—have high rates of substance use disorders (SUD) and complex mental health (MH) concerns. Many of these women begin the process of exiting their exploitation by seeking help for their SUD. However, clinics are ill-equipped to handle their unique, complex needs. This Capstone explored the ethical issues in MH/ SUD treatment of this population, and described how the Massachusetts General Hospital (MGH) Bridge Clinic, a trnsitional outpatient SUD clinic, implements an ethically informed approach to SUD care. The landscape of ethical issues concerning the clinic’s CSE patients was explored through French philosopher Michel Foucault’s work on power relationships, narratives of truth, and the ontology of physician conduct in the clinic. Autonomy-promoting care was identified as a core need to support CSE patients’ emergence from exploitation, addiction, and co-occurring disorders. Exemplar practices involve transforming clinics from a space into a “place” that meets CSE patients where they are in their process of recovery, by providing low-threshold treatment that prioritizes survivor-centered goals and integrates community partners. Further research is needed to implement changes that could enhance the MGH Bridge Clinic’s ability to provide this autonomy-promoting care. This includes changing operating hours, hiring more mental health care staff, improving the scope of community collaborations, and including gender-specific programming. Zamina Mithani, BSc, received her BS in neuroscience and global health from the University of British Columbia in Vancouver, Canada. She has engaged in global mental health research, worked for two biotechnology companies, and volunteers regularly for intercultural and mental health initiatives. She is passionate about developing new theoretical ways to think about the intersections of anthropology and religion in clinical ethics. She is also interested in the clinical and policy considerations within psychiatric/addiction care, end-of-life dilemmas, and pediatrics. She hopes to pursue a career as a physician while maintaining her love of storytelling. 20
Chayanka Mohan Capstone Mentor: Shashi Ramaiah, PhD Toxicologist and Clinical Pathologist, Global Head of Biomarkers, Pfizer Pharmaceuticals Faculty Advisor: Spencer Hey, PhD Teaching Faculty and Co-Director of Research Ethics, Harvard Medical School Center for Bioethics; Temporary Course Instructor, Harvard Medical School
Striking a Balance Between Business Objectives and Ethical Responsibilities through Novel Biomarker Technology In conjunction with researchers at the pharmaceutical company Pfizer, this Capstone: 1) outlined gaps in traditional liver biomarkers, such as inefficiency regarding the diagnosis, prognosis, and mechanisms of drug induced liver injury (DILI), and 2) detailed the benefits of translational liver biomarkers, which include the mitigation of burden, early and accurate diagnosis of DILI, and the reduction of attrition of drugs due to hepatotoxicity during drug development. A qualitative meta-synthesis–based approach was employed to illustrate a business perspective that involved an analysis of costs, theoretical value generation, and stakeholder analysis of the value-added benefit of such newer biomarkers. An ethical perspective was presented detailing the value of collaborative efforts of newer biomarkers, and the ethical dilemma present in the use of traditional biomarkers between profitability, the industry imperative, and a responsibility to maximize wellness. The ethical implications of traditional biomarkers are also detailed, among them the impact of false positives and negatives, which illuminates the ethical principle of justice. Finally, a synergistic framework is presented that strikes a chord between business objectives and ethical responsibilities in order to strive towards ethical profitability. The framework details key concepts such as data transparency and validity, benefits to patient, and value to society in its ethical section, and product efficiency, profit, and quality assurance in its business section.
Chayanka Mohan, MBus, received her BA in anthropology and communications from the University of California, Davis, and master’s degree in business (innovation and entrepreneurship) from University of Wollongong, UAE. She is interested in merging her expertise in business development and knowledge in bioethics in the hopes of adding value to the health care industry in a unique way.
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Efthalia Nikoglou Capstone Mentor: Ameet Sarpatwari, JD, PhD Instructor in Medicine, Harvard Medical School; Associate Epidemiologist and Assistant Director, Program on Regulation, Therapeutics, and Law, Brigham and Women’s Hospital Faculty Advisor: Rebecca Li, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Executive Director, Vivli Center for Global Clinical Research Data
Towards an Ethical Framework for the Value Assessment of Gene Therapies in the US This Capstone explored payer-induced supply-side moral hazard in the context of Gene Therapies (GT), assessed its ethical implications, and contributed to the integration of bioethics and health economics. Gene therapies (GT) are marketed as therapies that bare the potential to provide a durable or even curative effect on patients. They are delivered through a single administration or a short-term course of treatment, and promise significant cost savings to the health care system, improved patient quality of life, and increased productivity and social integration. However, as the GT clinical evidence is produced mostly by unrandomized and single-arm clinical trials with short-term follow-up, there is significant uncertainty about safety and efficacy, and the probability for GT to underperform is very high. This value proposition carries an unprecedented price tag, imposing a substantial financial burden on patients and their families, the U.S. taxpayers, hospitals, and the US health care system. This affordability issue has resulted in reduced market uptake, reimbursement challenges, and restricted patient access. So far, the response to the affordability and accessibility challenges has been driven by the demand side. Payers have been exploring and implementing innovative payment schemes to meet the substantial upfront payments and accept the significant risk of incurring high unrecoverable costs should the GT underperform. Consequently, by signaling a high willingness-to-pay threshold and encouraging the value-based pricing of GT, payers have been inducing a supply-side moral hazard effect that has been driving GT prices upward. Thalia Nikoglou, MBA, MSc, received her BA in political science and public administration from the National and Kapodistrian University of Athens, her MBA from the National Technical University of Athens, and her MSc in international health policy / health economics from the London School of Economics (LSE), for which she received a full LSE scholarship. Thalia is a health economist and health technology assessment expert. She worked in the pharmaceutical industry in health economics roles, on the development and implementation of evidence generation plans supporting the pricing and reimbursement of pharmaceutical products. Her interest in bioethics focuses on the ethics of healthcare resource allocation and the value assessment of curative therapies. 22
Randall L. Owen Capstone Mentor: Lawrence H. Staib, PhD Professor of Radiology & Biomedical Imaging, Biomedical Engineering, and Electrical Engineering, Yale University Faculty Advisor: Spencer Hey, PhD Teaching Faculty and Co-Director of Research Ethics, Harvard Medical School Center for Bioethics; Temporary Course Instructor, Harvard Medical School
Toward an Understanding of the Ethical Issues Due to Bias in Deep Learning in Radiology and Biomedical Imaging The overall goal of this Capstone was to understand the primary ethical issues that are arise as systems and workflows in radiology transition from diagnostic support to a more primary diagnostic role. Current radiology practice employs automated systems in a diagnostic support role supporting the primary clinical decision-making of the radiologist. As these systems become more accurate in their diagnostic capabilities, they will likely assume a more central role with the radiologist becoming more reliant on the diagnostic and prognostic recommendations posed by the system. These systems, however, are dependent on data that is subject to biases that include selection bias, information bias, and confounding of the data. There is concern that such biases in the data, combined with additional bias in the development of machine learning algorithms themselves, may enhance socioeconomic disparities in access and treatment, and might even affect patient safety. This Capstone developed a preliminary understanding of the impact of these changes in systems and workflows on the principles of autonomy, beneficence, nonmaleficence, and justice as radiological practice evolves from a clinician-centered to a system-centered model. Continued work is needed to fully quantify this impact and its effect on the practice of radiology.
Randall L. Owen, MS, MSc, MBA, PA-C received BA in physics magna cum laude from the University of Texas in 1985, his MS in health science from the George Washington University, his MSc in bioinformatics from Oxford University, and his MBA from the University of California, Los Angeles. He is a staff physician assistant at the Hartford Healthcare Medical Group. He works as an urgent care clinician at Hartford Healthcare and as a research affiliate in engineering at the Yale School of Medicine. His research focuses applications of artificial intelligence and deep learning to radiology and biomedical imaging, including its broader ethical impacts in the delivery of health care. Following graduation, he plans to continue this research to a PhD in engineering at Yale. 23
Danielle Pacia Capstone Mentor: Jonathan Darrow SJD, LLM, JD, MBA Assistant Professor of Medicine, Harvard Medical School; Core Faculty, Brigham and Women’s Hospital Program on Regulation, Therapeutics and Law Faculty Adviser: David Sontag, JD, MBE Teaching Faculty, Harvard Medical School Center for Bioethics; Lecturer on Medicine, Harvard Medical School; Managing General Counsel; Beth Israel Lahey Health; CoChair, Ethics Advisory Committee, Beth Israel Deaconess Medical Center
Ethical Considerations of CRISPR-Cas Antibiotics in the Shadow of a Resistance Crisis: Hope, or Dead-End? CRISPR-Cas biotechnology continues to be one of the most discussed topics in bioethics literature. However, less prominent are the ethical issues associated with CRISPR-Cas drug development when compared to topics such as human germline editing and gene drives. In 2019, Locus Biosciences, a biotechnology company, began the first phase of clinical trials for CRISPR-Cas antibiotics on patients with asymptomatic bacteriuria caused by Escherichia coli (E. coli). For decades, the creation of novel antibiotics has been stunted, worsening the antibiotic resistance crisis. CRISPR-Cas technology, which is based on mechanisms used by bacteria to defend themselves from viruses, may help curb the antibiotic resistance crisis, but it may just be a temporary solution. Utilizing a literature review as well as interviews with Locus Biosciences, this Capstone explored both the drug’s challenges (such as clinical trial design and the unintended consequences) and future prospects (such as “fixing” the antibiotic market and helping curb the antibiotic resistance crisis). The project was comprised of two parts: 1) reviewing necessary background on the drug and highlighting what aspects, if any, are important for ethical consideration; and 2) a discussion of the challenges associated with CRISPRCas antibiotics. CRISPR-Cas antibiotics are worth pursuing, but their development raises a number of potential ethical issues, including economic and societal challenges that are similar to traditional antibiotics. In the future, policymakers should use this analysis in order to help create regulations that maximize the benefits of CRISPR-Cas antibiotics. Danielle Pacia, BA, received her BA in bioethics from the University of Alabama. During her time at Alabama, Danielle completed multiple projects on genomic ethics within indigenous communities and contributed to a forthcoming book, Indigenous Bioethics. Her interests include health policy, genomic ethics, and reproductive justice. While working on her undergraduate thesis, Danielle completed the Emily Murray Fellowship at the Hastings Center in March of 2019. She was a participant in Yale’s Bioethics Institute in 2018 and served as a program manager in 2019. Following the completion of her MBE, Danielle will be working as a research assistant at the Hastings Center prior to attending law school. 24
Casey A. Rojas Capstone Mentor: Stowe Locke Teti, HEC-C Teaching Faculty and Director of Writing Support, Harvard Medical School Center for Bioethics; Lecturer on Global Health and Social Medicine, Harvard Medical School Faculty Advisor: David Sontag, JD, MBE Teaching Faculty, Harvard Medical School Center for Bioethics; Lecturer on Medicine, Harvard Medical School; Managing General Counsel; Beth Israel Lahey Health; CoChair, Ethics Advisory Committee, Beth Israel Deaconess Medical Center
For Principles of Bioethics: A Podcast Introducing Bioethical Issues through Popular Culture Media While bioethics prospers in the presence of diverse contributors, much bioethical work is contained within academic institutions and healthcare facilities. Members of the public may feel ill-equipped to discuss bioethical dilemmas, or to debate the moral conundrums that underlie them, in technical or academic terms. This Capstone sought to take inchoate bioethical understandings or opinions and provide subject matter expertise by introducing bioethical issues through an easily approachable medium. This was achieved by leveraging the ubiquity and convenience of podcasts to introduce listeners to complex bioethical issues—and the analytic ethical frameworks to assess them—coming from examples present in popular culture media such as television, movies, and books. Podcasts’ popularity has soared alongside the widespread use of handheld electronic devices. Today, the majority of people in the United States have listened to a podcast, and nearly one-quarter of the population tunes in on a weekly basis. Amongst the most listened to genres are entertainment podcasts and educational podcasts focusing on health, technology, politics, or science. Podcasts continue to gain popularity and are now commonly used as a primary source of information and recreation. This enticing combination, along with the audio-only format that requires listeners to engage with the content in a deeper manner, encourages listeners to construct a mental understanding of the issues. Accordingly, the retention rate of auditory learning is two times higher than reading and four times higher than attending a lecture. Casey A. Rojas, JD, received his BA from Columbia University, majoring in economics/philosophy while concentrating in psychology, and his JD from the University of Maryland, where he obtained a health law certificate. Casey is an advocacy and government relations lawyer at the Massachusetts Medical Society. His work focuses on promoting development of fair and equitable law reflecting an ethically considered approach to advocacy. He most enjoys focusing on bioethical topics relating to behavioral economics and the future of bioscience. After graduating, Casey will continue his work at the Medical Society, while further developing his podcast, For Principles of Bioethics, to engage members of the public in bioethical discussion. 25
Rohit Rustagi Capstone Mentor: Joseph Giacino, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Professor of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital; Neuropsychologist, Department of Psychiatry, Massachusetts General Hospital Faculty Advisor: Anthony Breu, MD Teaching Faculty, Harvard Medical School Center for Bioethics; Assistant Professor of Medicine, Harvard Medical School; Director of Resident Education and Hospitalist, VA Boston Healthcare System
Navigating Health Care Challenges after Severe Acquired Brain Injury This Capstone involved work in the third year of a study geared towards gathering and analyzing the economic, clinical, and psychosocial challenges caregivers of people with severe acquired brain injury will face though personal narratives. IRB approval was sought through careful analysis of the consent form, where the complexities in human subject research involving caregivers, patients, and waiver of confidentiality were addressed. In view of the sensitivities involved in the subject matter and the level of transparency required by the study, a consent form was developed to ensure that caregivers understand the study and risks, emphasizing that the personal struggles of the caregivers would be made public. The consent process was also formulated to ensure that caregivers would understand that their participation was voluntary, they can withdraw at any time, and are free to retract any statement in view of the intent to publish responses without protection of confidentiality. Waiver of confidentiality was crucial because readers of the study will better identify with the narratives if there is a name and face behind their stories. The IRB-approved interview questions were classified into principlist categories so that bioethical analysis could be readily completed after the data are collected. The results of the study, once disseminated to other caregivers, clinicians, and the general public, will help unmask the inequities in the health care system, provide better access of care to patients with severe brain injury, and assist caregivers in their efforts in supporting their loved one. Rohit Rustagi, BS, received his BS in biomedical engineering from the University of Virginia with highest distinction. As an undergraduate, he researched stem cell differentiation, water potability, and spinal mechanics while also founding a brain injury awareness organization and medical device company. He is primarily interested in brain injury and surgical bioethics. Rohit has published academia and popular media, has provisional patents, was inducted into Tau Beta Pi, and won the ACC Inventure Prize. He was awarded a Fulbright-Nehru Award to conduct brain injury research in India next year.
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Shreya Sabharwal Capstone Mentors: Fatima Cody Stanford, MD, MPH, MPA Assistant Professor of Medicine, Harvard Medical School; Obesity Medicine Physician for Adults, Adolescents, and Children, Massachusetts General Hospital Weight Center Karen J. Campoverde Reyes, MD Postdoctoral Researcher, Harvard Medical School; Research Fellow, Massachusetts General Hospital Neuroendocrine Unit and Liver Research Center, Beth Israel Deaconess Medical Center Faculty Advisor: Rebecca Li, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Executive Director, Vivli Center for Global Clinical Research Data
Attaining Legal Protection Against Weight Discrimination Biases and discrimination against people with obesity lead to social disparities, socioeconomic disadvantages and health care inequalities. In the United States, the prevalence of obesity among children and adults has steadily risen, leading to growing numbers of people facing this kind of discrimination every day. Even so, Michigan state and six cities in other states are the only U.S. jurisdictions that have implemented laws banning discrimination based on weight, height, or physical appearance for protection in categories such as employment, housing, and educational institutions. This Capstone consisted of two phases. The first phase involved support of the Byron-Rushing Bill, which would make discrimination on the basis of height and weight unlawful in Massachusetts. This was done by researching the states and cities with current anti-weight discrimination laws in place to determine how to go about achieving this protection. Almost all regions that have anti-weight discrimination laws in place provide protections for employment, housing, and business establishment categories. The second phase of this Capstone explored the knowledge and understanding of weight stigma and discrimination amongst legislators and policy makers through a survey. The results from these surveys will be submitted for publication. In addition, the Massachusetts State House held an advocacy briefing for (state) senators, and (state) representatives and their aides, and pushed the bill forward for an upcoming vote through the Ways and Means Committee. The passage of this bill to approval is currently in process. Shreya Sabharwal, PharmD, She received her BS in pharmaceutical and health care studies and Doctor of Pharmacy from Philadelphia College of Pharmacy. She is an endocrinology medical liaison at Novo Nordisk, Inc. where she has been working for five years, establishing and maintaining peer-peer relationships with field experts at major academic institutions and clinics in New England and New York state. Her research and interests focus on advocating for people experiencing health care inequalities and social disparities as a result of inadequate laws as well as societal stigmas. Following graduation, Shreya plans to continue her advocacy work. 27
Lynn M. Sipsey Capstone Mentors: Wed AlMutari, MD Emergency Medicine Attending and Simulation Educator, Prince Mohammad Bin Abdulaziz Hospital, Riyadh, Saudi Arabia Nicholas Sadovnikoff, MD Teaching Faculty, Harvard Medical School Center for Bioethics; Assistant Professor of Anaesthesia, Harvard Medical School; Co-Director of the Surgical Intensive Care Unit, Brigham and Women’s Hospital Faculty Advisor: Robert D. Truog, MD Director, Harvard Medical School Center for Bioethics, Frances Glessner Lee Professor of Medical Ethics, Professor of Anaesthesia and Pediatrics, Harvard Medical School; Senior Associate in Critical Care Medicine, Boston Children’s Hospital
Effect of Simulation in Ethics Education and Evaluation for Physician Learners Physicians serve on most clinical ethics consult services. However, many have not benefitted from the relatively recent introduction of an ethics curriculum in medical schools, and opportunities for post-graduate ethics education are rare. Medical education has adopted simulation-based training for its utility in improving patient outcomes. Studies have shown realistic simulators are effective in enhancing technical, behavioral and social skills in medicine. However, little is written on the use of simulation for education and evaluation in ethics. This scoping literature review investigated simulation-based ethics education and evaluation of physicians. Using PRISMA guidelines, a search of PubMed, ERIC and CINAHL databases yielded over 700 abstracts in October 2019. Studies with modalities in addition to simulation were excluded, as were inter-professional and team-based simulations, the use of computers, virtual reality, and artificial intelligence. The majority of these studies took place in single U.S. academic hospitals, and there was little uniformity in the evaluation of educational outcomes. Many simulations included themes of breaking bad news and goals of care discussions; thus, palliative care, hematology/oncology, and critical care physicians were commonly evaluated. This review identified a paucity of literature on the effect of simulation on ethics education and evaluation. There is a need for continued investigation within a more diverse set of medical specialties, as well as a wider array of ethical concepts. Lynn M. Sipsey, MD received her bachelor’s degree in Scientific Illustration and Biology from Arcadia University and her MD from Larner College of Medicine at the University of Vermont (LCOM at UVM). She is an incoming resident physician at Abbott Northwestern Hospital in Minneapolis, MN. During her time at LCOM, she co-led the ethics student interest group and assisted in running simulations for UVM Medical Center staff as well as UVM nursing and medical students. She is particularly interested in disability rights and models of surrogate decisionmaking. During residency, Lynn plans on continuing to practice clinical ethics and preparing for a fellowship in pulmonary/critical care medicine. 28
Allison Slater Capstone Mentor: Eric J. Hardt MD Associate Professor of Medicine, Boston University School of Medicine (retired); Geriatrics Consultant to HouseWorks Faculty Mentor: Jon Wesley Boyd, MD, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Associate Professor of Psychiatry, Harvard Medical School; Co-Director, Human Rights and Asylum Clinic, Cambridge Health Alliance
Language Differences Shouldn’t Be Barriers Despite the existence of federal legal protections to ensure that medical care is nondiscriminatory, the medical literature reveals continued disparate and inferior health outcomes in populations of patients with limited English proficiency (LEP). Though this population is particularly vulnerable to medical errors and adverse events related to poor communication, hospitals do not universally value and support interpreter services, or the hiring and certification of bilingual staff. Both health systems and individual clinicians have an obligation to ensure that care provided to patients with LEP is equal in quality to the care provided to English-proficient patients. This Capstone responded to the this need for conversation, education, and establishment of best practices for caring for patients with LEP. This project examines the influence of time constraints, professional obligations, law, and social politics in the care of patients with LEP in the medical system. This Capstone used interviews with leaders in medical interpretation and a literature review on the historical, ethical, and social issues regarding multicultural and multilingual interactions in medicine, to conclude there are strong moral, legal, and professional obligations to improve care and communication for persons with LEP, and to provide opportunities for improvement. This conclusion was informed by principlism, feminist ethics, and narrative ethics frameworks, as well as the author’s experiences in the hospital as a medical student. The goal was to (1) inform readers of the ethical nature of everyday communication, (2) to spark reflection of the reader’s own experiences, and (3) provide recommendations for best practices. Allison Slater, BA, received her BA in Hispanic studies from Scripps College. At the University of California, Irvine (UCI), and is a medical student at UCI in the Program in Medical Education for the Latino Community. Allison co-leads the trauma-informed care curriculum, teaches best practices in caring for patients with limited English proficiency, and serves on the ethics committee. Her work focuses on ethical obligations to meet patients‘ language needs. Allison is passionate about identifying and eradicating disparities in medical outcomes and access, specifically with regard to doctor-patient communication. She is a Gold Humanism Honor Society member and Fulbright grantee. After graduation, she will return to medical school and pursue a residency in family medicine. 29
Joanne C. Suarez Capstone Mentors: Fidencio Saldana MD, MPH Dean for Students, Harvard Medical School Charlene Galarneau, PhD, MAR Teaching Faculty, Center for Bioethics, and Lecturer on Global Health and Social Medicine, Harvard Medical School; Associate Professor Emerita, Women’s and Gender Studies Department, Wellesley College Faculty Advisor: Kelsey Berry, PhD Postdoctoral Research Fellow, Harvard Medical School Center for Bioethics; Research Fellow, Global Health and Social Medicine, Harvard Medical School
LatinX Bioethics: A Need for a Subfield Bioethics is a field that serves diverse communities. LatinX voices honor the contributions of LatinX scholars, center the concerns of LatinX communities, and educate about LatinX ethical and moral concerns. With careful attention to race and ethnocultural perspectives, LatinX bioethics is concerned with addressing the ethical and moral issues affecting LatinX communities. In this transdisciplinary field, the voices of scholars, artists, and activists have amplified the communities’ bioethical concerns. Some pressing contemporary bioethical issues in which LatinX voices are particularly relevant are immigration reform, health disparities, research participant inclusion, achieving ethnic and cultural diversity in bioethics itself, and the role of interpersonal commitments in physician-patient relationships. This Capstone conducted a literature review to address the gaps in bioethics. In reviewing the scientific literature and conducting field interviews, thirty-one LatinX contributors were identified; twelve were selected based on an inclusion and exclusion criteria. Past and contemporary voices in LatinX bioethics were identified including Eugenio Maria de Hostos, Maria Helen Trias, and Ada Maria IsasiDiaz. Additionally, ten LatinX bioethics cases were discovered. These voices contribute valuable perspectives to bioethics, and the field would benefit by constructing a space for a LatinX bioethics subfield that highlights and promotes LatinX contributions.
Joanne C. Suarez, BS, received a BS in counseling psychology from Johnson and Wales University concentrating on addictions and mental health counseling. She is a community health assistant with The Family Van, a mobile clinic program of Harvard Medical School. Joanne provides culturally responsive mental health and stabilization supports to underserved communities in the Greater Boston Area. She is a founding member of the LatinX bioethics affinity group of the American Society for Bioethics and Humanities in 2019 and a proponent of establishing a subfield of bioethics to address issues affecting LatinX communities. After graduation, Joanne will continue her work with the Family Van, and will expand LatinX bioethics with colleagues while completing medical school pre-requisites. 30
Kayla Tabari, RN, BSN Capstone Mentor: Jennifer McGuirl, DO, MS Instructor in Pediatrics, Harvard Medical School; Attending Neonatologist, Brigham and Women’s Hospital Faculty Advisor: Aimee Milliken, PhD, RN, HEC-C Teaching Faculty, Harvard Medical School Center for Bioethics; Clinical Ethicist, Nurse Scientist, and Director of Research, Brigham and Women’s Hospital
Decision Aids in the Labor and Delivery Setting Bodily autonomy can be difficult to maintain during pregnancy and childbirth. In the labor and delivery setting, clinicians can help their patients take ownership of the decisions made during this vulnerable time through the use of decision aids. This Capstone began with a literature review to understand what kind of decision aids exist for pregnant and laboring patients, and an analysis was performed to assess how effective decision aids are in general. The data robustly supported the utility and benefit of decision aids, and shared decision-making more broadly. Decision aids exist in various medical specialties where appropriate, including in maternal-fetal medicine. Data overwhelmingly support the conclusion that clinicians in the labor and delivery setting must promote patient autonomy by seeking the patient’s input and discussing options at every opportunity. After reviewing available decision aids, the lack of decision aids that focus on the augmentation of labor became apparent. To rectify this absence, a study was conducted to understand how to make a cohesive and informative decision aid using relevant literature. This project culminated in the creation of a decision aid for labor augmentation, which was informed by the Health Decision Sciences Center at Massachusetts General Hospital.
Kayla Tabari, RN, BSN, received her BS in nursing from the University of San Francisco. She began her career as a labor and delivery nurse in the Mission District of San Francisco, California. Kayla is passionate about addressing racialized disparities in health care settings, specifically as they relate to maternal and fetal mortality rates in the United States. She is interested in examining the role that moral distress and burnout play in this context, and how ethics education can shape the next generation of nurses. In the fall, she will move to Portland, Oregon, to pursue a PhD in nursing at Oregon Health and Science University.
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Angeliki N. Vasileiou Capstone Mentor: Sharon Shriver, PhD Director of Programs, Public Responsibility in Medicine and Research Julie F. Simpson, PhD Director of Research Integrity Services, and Affiliate Assistant Professor of College Teaching and Education, University of New Hampshire Faculty Advisor: Rebecca H. Li, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Executive Director, Vivli Center for Global Clinical Research Data
Understanding and Supporting Oversight Professionals’ Roles in Ensuring Responsible Conduct of Research (RCR) Review of research by regulatory oversight committees, such as hospital Institutional Review Boards (IRBs), is a cornerstone of safeguarding research integrity (RI). IRB personnel are required to be aware of the principles and guidelines regulating Responsible Conduct of Research (RCR) and to be able to identify and handle problematic or irresponsible practices. As awareness of RCR increases, IRB members are also tasked with providing or monitoring RCR training for researchers. A literature review showed only about onethird of the academic research done in RI included empirical data. Furthermore, even the publications that examined causes for misconduct disregarded the regulatory oversight professionals’ perspectives and roles, and how these align with RI findings. With this in mind, a research team including the Capstone student held six focus groups comprised of IRB professionals at PRIM&R’s Advancing Ethical Research conference in November 2019. The researchers moderated the group discussions with a view to: first, identify areas where IRB professionals are well-informed about research ethics broadly; second, identify gaps and misconceptions in their understanding of RCR; third, characterize the role of IRB professionals in RCR education; and fourth, assess their needs for educational resources. Group participants were recruited through the pool of conference attendees and were sorted into groups according to institution and role. The information gathered will guide the creation of new resources in the future, and inform the RCR field of the roles that these oversight professionals play in ensuring the integrity of research. Angeliki N. Vasileiou, JD, received her law degree from Democritus University of Thrace, Greece, and was consequently admitted to the Athens Bar Association. She is a Greek lawyer, who has been working at Nikolaos Vasileiou and Associates Law Firm since 2015. Angeliki has worked extensively in the field of contract law and as a mediation advocate. Her interests in bioethics range from educating different stakeholders in bioethics and research on novel biotechnologies to health law and policy. Following the completion of the MBE program, she will continue her pursuits in bioethics research and education.
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Linda Yang Capstone Mentor: M. William Lensch, PhD Executive Director, Greater Boston Consortium on Pathogen Readiness; Strategic Advisor, Office of the Dean, Harvard Medical School Faculty Advisor: Insoo Hyun, PhD Teaching Faculty, Harvard Medical School Center for Bioethics; Senior Lecturer on Global Health and Social Medicine, Harvard Medical School; Professor, Department of Bioethics and Director of the Undergraduate Bioethics Program, Case Western Reserve University School of Medicine
Scientific Limitations and Ethical Considerations of Heritable Gene Editing The birth of the world’s first genome-edited babies in 2019 defied ethical and scientific norms. Although the heralded CRISPR/Cas9 system was used to edit-in a naturally occurring gene variant of HIV receptor, CCR5, this advancement has not been celebrated commensurately. Instead, the attempt to genetically vaccinate individuals upon conception has been the center of dueling narratives. The ethics of enhancing human potential are on trial, both in the bioethics and biomedicine communities, and society at-large. In particular, this Capstone revised the treatment-enhancement distinction used to characterize ethics of heritable gene editing. A bioconservatism-transhumanism axis was used to frame discussion of the outstanding ethical considerations, and to weigh the hesitancy around implementing technological developments, such as gene editing, in broad society against those that champion science as a means to evolve beyond the limits of biological determinism. Both risks and benefits are biomedical and social unknowns—further complicating the harms calculus determining whether helping those in society to alleviate suffering through genetic intervention is justifiable. Should it be permissible, heritable gene editing may be the only way for those who carry devastating genetic disease to have genetically related children. Without governance and a responsible path forward, such clinical applications will exacerbate existing social inequalities, given the inequitable barrier of access. Additionally, we must diversify our reference genome so that individuals do not inadvertently “whitewash” their progeny. As such, the ethics of emerging technologies are not clear-cut and are constantly evolving. The principle of non-maleficence (minimal harm, maximal benefit) may determine when heritable gene editing is ethically permissible in our collective future. Linda Yang, MSc, received her BSc in molecular biology and biochemistry from Simon Fraser University in Vancouver, Canada, and her MSc in life sciences from Kyoto University, Japan. She is a life science researcher, who has focused on elucidating the role of DNA damage and epigenetic marks in chromatin biology. This work led Linda to become curious about the bioethics of using CRISPR in heritable human gene editing. She received the Harvard Certificate of Distinction in Teaching for the fall 2019 semester, an award granted for excellence in undergraduate teaching. She has been offered a position in the Genetics and Biochemistry Branch at the US National Institutes of Health following graduation. 33
Andrea Yarkony Capstone Mentor: Michael Ieong, MD Medical Director, Medical Intensive Care Unit, Boston Medical Center; Assistant Professor of Medicine, Boston University School of Medicine Faculty Advisor: John Marron, MD, MPH Teaching Faculty, Harvard Medical School Center for Bioethics; Instructor in Pediatrics, Harvard Medical School; Attending Physician, Dana-Farber Cancer Institute and Boston Children’s Hospital; Ethics Associate, Boston Children’s Hospital
Quality Assessment of Ethics Rounds: A Tripartite Tool Ethics unit rounds at Boston Medical Center (BMC) are small, group-facilitated discussions designed to act as both moral-distress relief and continuing education concerning ethical questions. The Ethics Unit Rounds program coordinators require efficacy feedback in order to improve and expand the program. The goal of this Capstone was to design a tool to measure the success of ethics rounds as defined by the dual goals of moral distress mitigation and ethics education by adapting existing measurement techniques from the literature. A literature review revealed that quantitative verified moral distress scales and Likert scales best fit the unique ethics unit rounds project at BMC. Towards assessing moral distress mitigation, the Moral Distress Thermometer (MDT), a validated tool used in previous settings, was used as an instantaneous and intuitive metric of moral distress. To address educational goals, a short Likert scale-based survey was designed according to the goals expressed by project leadership. In order to standardize learning goals across diverse departments and to familiarize participants with the language and concepts that will be seen on the MDT and the survey, an ethics worksheet was developed. The MDT, the survey, and the worksheet comprise a tripartite educational and measurement tool that was employed to quantitatively assess unit rounds at the BMC and help to create consistent touchpoints in the ethics unit rounds program.
Andrea Yarkony, BA, received her degree in modern languages and literatures from Kenyon College. As an undergraduate, she worked as an apprentice teacher for Russian and French language classes and served as an EMT and firefighter for the local volunteer fire department. She received highest honors for her senior thesis and a Fulbright grant to teach medical English in Russia. These pedagogical experiences spurred her interest in the ethics of continuing education, the focus of her Capstone. Andrea plans to attend medical school after completion of the MBE program.
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Acknowledgements Capstone Mentors and Faculty Advisors
Brendan Abel, JD Melissa Abraham, PhD, MSc Natasha Aljalian, MBE, JD, LLM Wed AlMutari, MD Kelsey Berry, PhD Barbara Bierer, MD Jon Wesley Boyd, MD, PhD Anthony Breu, MD I. Glenn Cohen, JD Brian Cummings, MD Christy L Cummings MD Jonathan Darrow SJD, LLM, JD, MBA Charlene Galarneau, PhD, MAR Bizu Gelaye, PhD, MPH Joseph T. Giacino, PhD Robert C. Green, MD, MPH Eric J. Hardt MD Spencer Hey, PhD Insoo Hyun PhD
Michael Ieong MD Abigail M. Judge, PhD Martha Jurchak, PhD, RN Louise P. King, MD, JD K. Babu Krishnamurthy, MD M. William Lensch PhD Elizabeth Levey, MD Rebecca H. Li, PhD Jonathan M. Marron, MD, MPH Jennifer McGuirl, DO, MS Wendy McHugh, RN, MS Martin McKneally, MD, PhD Aimee Milliken, PhD, RN, HEC-C Jess Miner, PhD Christine Mitchell, RN, MS, MTS Lisa Moses, VMD, CVMA Steve O’Neill, LicSW, JD Shashi Ramaiah, PhD Karen J. Campoverde Reyes, MD
Christopher Robichaud, PhD Nicholas Sadovnickoff, MD Fidencio Saldana MD, MPH Ameet Sarpatwari, JD, PhD Carmel Shachar, JD, MPH Sharon Shriver, PhD Julie F. Simpson, PhD David Sontag, JD, MBE Lawrence H. Staib, PhD Fatima Cody Stanford, MD, MPH, MPA Stowe Locke Teti, HEC-C Joel Thompson, JD Nhi-Ha Trinh, MD, MPH Robert D. Truog, MD Melissa Uveges, PhD, MA, RN Richard Whyte, MD, MBA Stephen Wood, MS, ACNP-BC Alicia Ely Yamin, JD, MPH
Capstone Seminar Faculty Christine Mitchell, RN, MS, MTS Melissa Abraham, PhD Stephen D. Brown, MD
Steve O’Neill LicSW, BCD, JD David Sontag, JD, MBE Stowe Locke Teti, HEC-C
Master of Bioethics Leadership Rebecca Weintraub Brendel, MD, JD, Master of Bioethics Program Director Brooke Shinnamon Tempesta, EdD, Master of Bioethics Program Associate Director Amanda Chieco, MS, Education Program Coordinator
Center for Bioethics Leadership
Robert D. Truog, MD, MA, Director Christine Mitchell, RN, MS, MTS, Executive Director Rebecca Weintraub Brendel, MD, JD, Associate Director Edward Hundert, MD, Associate Director Mildred Z. Solomon, EdD, Director, Fellowship in Bioethics Genevieve Saphier, RN, MSN, WHNP, Director of Administration
Center for Bioethics Staff
Lisa Bastille, MS, Program and Financial Administrator Angela Alberti, MLA, Communications Specialist Amanda Chieco, MS, Education Program Coordinator Ashley Trautmann, Event Program Coordinator Kyle Amato, Staff Assistant Laura Gallant, Staff Assistant 35
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