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Formerly known as Evening Ethics

Our Ethics Explored discussions provide informal, multidisciplinary discussions about current issues in healthcare ethics and typically take place every month or as timely topics arise.

DETAILS & SCHEDULES BY YEAR*

*make sure to check each tab for details

For questions about accommodations, please email us!

    2024 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

    "More Than Just a Number: Using Our Stories to Navigate Anti-Black Racism and Poor Health"

     


    co-sponsored with the Spencer S. Eccles Health Sciences Library (EHSL) & 
    in collaboration with the U of U Spencer Fox Eccles School of Medicine (SFESOM) - Department of Internal Medicine


    WEDNESDAY, MARCH 6, 2024
    Noon-1pm

    (flyer)

    HYBRID EVENT
    Room:  TBD
    Virtual: through Zoom
    CME available

    "Imagining Socially Just Policy Narratives About Dementia"

    This interactive talk will present work in progress on an NEH-funded Collaborative Research project, "The Meanings of Dementia: Interpreting Cultural Narratives of Aging Societies." It will focus on ways to bring creativity and encouragement to the task of real-world policymaking by imaging socially just policy narratives for America's aging society. Drawing on health humanities approaches, we will explore several prominent cultural narratives about dementia and consider how to intervene in narratives that do not lead to improved lives for people facing dementia and for dementia caregivers.


    in collaboration with ICEL4 (4th International Conference on End of Life) & U of U - SJ Quinney College of Law

    "The Arc of Hope: Existential Questions in Serious Illness"

    What is the role of hope in facing a serious illness or injury? What can we do when a patient or their family are holding onto hope that is totally unrealistic? Our conversation will explore the complexities of hope for patients, families, and healthcare providers, and consider moral obligations relevant to communication and decision-making.

    BACKGROUND READINGS:


    co-sponsored with Primary Children's Hospital (PCH) - Department of Pediatrics & 
    in collaboration with the U of U Spencer Fox Eccles School of Medicine (SFESOM) - Department of Pediatrics 

    GENETICS HOT TOPICS

    Disability & Healthcare

    Wednesday, JANUARY 24, Noon-1:00pm

    Mike Rembis

    MIKE REMBIS, PhD

    SUNY-University at Buffalo

    <POSTPONED>
    update to come


    VIRTUAL EVENT:  

    ZOOM LINK

    CME: 24019

    "Telling Stories"

    What is the importance of telling stories in and about healthcare? What can the humanities bring to high-tech fields like genomics and modern medicine? How are Disability Studies scholars and disability historians changing the way we think about patients and their perspectives? Professor Rembis will address these and other questions in a talk that draws from his many years researching the history of eugenics, disability, madness, and asylums in the United States. 


    co-sponsored with the Utah Center for Excellence in ELSI Research (UCEER)

    For questions about accommodations, please email us!

    GENERAL INFO

    1.5 hours of CME credit       |       When in person, refreshments are offered

    *To protect the privacy of all who attend and the tempo of the discussion:
    1)  the virtual side of hybrid meetings will start in the Waiting Room
    2)  participants need to email the Center to receive a passcode

    A Center member facilitates each discussion, which are guided by the topic, and we invite people with relevant expertise, experience, and informed opinions to join us as  moderators, speakers, and/or panelists. Generally, 15-40 people from a variety of disciplines, including healthcare, public policy, philosophy, law, and business attend.  When relevant, we make available, in advance, short articles from the nation's most thoughtful newspapers, journals, and magazines to help enliven our discussions.

    Check back here for the most current listings, or:

    2023 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

    Disability & Healthcare

    Wednesday, NOVEMBER 29, 5:30-7pm

    San Juan High School

    HYBRID EVENT:  

    Room: EHSEB 2600

    Zoom link

    Meeting ID: 959 4441 8981 

    Passcode: email for code

    CME: 333019

    GRETCHEN CASE, PhD, MA

    “Living with Disabilities in Rural Utah”

    Over two years, a team of medical students from the TRUE (Tribal, Rural, and Urban Underserved Medical Education) Program at the School of Medicine travelled around rural and remote Utah to interview persons with disabilities and their families about access to health care and their lived experiences. Led by faculty member Gretchen Case and accompanied by videographer Mars Jacobsen, the team filmed interviews with individuals and families from all over the state. From this interview footage, they created a short video intended to bring attention to the needs of people with disabilities outside of major urban centers. To begin this discussion, we will watch the short video and hear from Dr. Case as well as participating students, many of whom continue to work on research and education initiatives inspired by this project, including: James Carrington, Mira Reynolds, and Karishma Shah.
     

    This project was generously supported by a grant from the Utah Developmental Disabilities Council, a state agency created to advocate for, and strengthen leadership skills in, individuals with disabilities and their families.

    Rural Utah

    GENETICS HOT TOPICS

    Wednesday, OCTOBER 25, Noon-1:00pm

    Teresa Burke

    TERESA BLANKMEYER BURKE, PhD

    Gallaudet University

    VIRTUAL EVENT:  

     Zoom link

    Meeting ID: 964 1254 8282 

    Passcode: email for code

    CME: 298019
     

    "About Us, With Us: Genetic Policy Discussions in the Signing Deaf Community"

    Teresa Blankmeyer Burke is Professor of Philosophy and Director of the School of Arts & Humanities at Gallaudet University, a bilingual university that uses American Sign Language and English to serve deaf, hard of hearing, and hearing students in Washington DC. She is the only signing Deaf philosopher in the world with a doctorate in philosophy. Her publications cover a wide range of genres, including peer-reviewed scholarship in philosophy, bioethics, policy, and signed language interpreting ethics. She has also written for the general public, including mainstream media publications, creative nonfiction, and poetry in both American Sign Language and English. Dr. Burke has served on a number of national and international committees for a variety of organizations, including the United Nations, World Federation of the Deaf, the American Philosophical Association, the Hearing Loss Association of America, and the National Association of the Deaf (USA).

    “Nothing about us, without us” is a disability rights slogan that captures the longstanding tension between bioethicists and disability activists. Despite the right to communication access, policy discussions with the potential to impact Deaf individuals often exclude Deaf experts due to logistical barriers that are overlooked in the planning process, further exacerbating the tension. Genetic technologies such as CRISPR pose an existential threat to the signing Deaf community, yet the signing Deaf community has been absent from many of the discussions leading to reports and policy recommendations. This paper sketches out some of the features of the existential threat for this minority language community, identifies some of the existing infrastructure barriers, and offers recommendations for a radical inclusion of Deaf-centric perspectives for future work on this topic.

     

    Wednesday, SEPTEMBER 27, 5:30-7pm

    2023-24 HEALTH HUMANITIES SPEAKER

    Jim Ferris

    JIM FERRIS, PHD

    The University of Toledo

    HYBRID EVENT:  

    (flyer)

    Room:  RAB 117   (Research Admin. Bldg) 
    -south of the EHSEB, east of the University Guest House

     Zoom link

    Meeting ID: 928 7883 7587

    Passcode: email for code

    CME: 270019

    "Crip Poetry and Performing the Principles of Medical Ethics"

    Disability scholar and writer Jim Ferris presents a provocative perspective on how to enact autonomy, beneficence, non-maleficence, and justice.  He'll discuss how the characteristics of "crip poetry"--written by and about bodies labeled "abnormal"--align with the principles of medical ethics, showing health-care professionals how essential it is to challenge stereotypes, foreground atypical perspectives, and emphasize embodiment by being aware of the centrality of the body in all our lives.

    BACKGROUND READINGS

    Wednesday, AUGUST 30, Noon-1pm

    Audrey Yap

    AUDREY YAP, PhD

    University of Victoria

    VIRTUAL EVENT:  

    (flyer)

    Zoom link

    Meeting ID: 946 6536 0003

    Passcode: email for code

    CME: 242019

    “Disability Justice and Transformative Justice”

    Dr. Yap will discuss connections between disability justice, institutionalization, and mass incarceration, as well the response from abolitionists about proposed solutions. Her presentation will also have implications for cross-movement solidarity and what it might mean to be anti-oppressive in an academic setting. 

    For questions about accommodations, please email us!

    in collaboration with the Utah Center for Excellence in ELSI Research

    Amy Caruso Brown
    MARCH 30, 2023
    Noon-1:30pm
    AMY CARUSO BROWN, MD, MSc, MSCS
    2022-23 David Green Memorial Speaker
    "Do Some Reasons Matter More Than Others?
    Religion and Other Forms of Belief in Pediatric Decision Making"

    Amy Caruso Brown, MD, MSc, MSCS, is an Associate Professor of Bioethics and Humanities and of Pediatrics. Dr. Caruso Brown is board certified in general pediatrics, pediatric hematology/oncology and is a certified health care ethics consultant (HEC-C).  She currently serves as the Interim Chair of Bioethics and Humanities at SUNY Upstate Medical University where she is a member of the ethics committee.

    Dr. Caruso Brown has invited us to read the short article below in preparation for our discussion, which may cover such questions as:  How and when do parental reasons for refusal of care or demands for care matter?  Should the ethical bar to override parental decisions be lower than the legal one?  What level of harm is significant if the outcomes won’t be known for years?

    BACKGROUND READING:

    Gillam. (2016). The zone of parental discretion: An ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clinical Ethics., 11(1), 1–8.  https://doi.org/10.1177/1477750915622033


    You can also see Dr. Caruso Brown in the
    2022-23 David Green Pediatric Grand Rounds at PCH:

    Thursday, March 30, 8-9am
    "The Role of Conscience in Pediatric Training"
    HYBRID EVENT
    Room:
    PCH 3rd Fl Auditorium
    & Virtually via YouTube
    CME : available through Intermountain

    ~*~ In collaboration with Primary Children's Hospital (PCH) & U of U SOM - Department of Pediatrics ~*~
    and acknowledges the Medical Staff Office at PCH for their support of the lecture
    Jeff Botkin
    JANUARY 17, 2023
    Noon-1:30pm
    JEFFREY BOTKIN, MD, MPH
    GENETICS HOT TOPICS
    "Genetic Testing and Reproductive Technologies Post-Dobbs"
    Prenatal diagnosis has been available for pregnant couples and those planning a pregnancy since the 1960’s.  A variety of tools are in routine use and can be applied to fertilized eggs in the laboratory through to the time of birth.  Traditionally, these tools have been used by parents and professionals for a variety of reasons. The Roe vs. Wade decision by the US Supreme Court allowed states to restrict access to abortion after the time of viability, whether the abortion was sought for “fetal indications” or for a desire not to bear a child.  The Dobbs decision in 2022 now permits states wide authority to restrict abortion for any indication throughout the course of pregnancy.

    This discussion will review the traditional justifications for prenatal diagnosis, the current tools available, and the impact the Dobbs decision may have on the ability of individuals to use prenatal diagnosis and respond to the information obtained with these technologies.

    BACKGROUND READINGS:


    ~*~ In collaboration with UCEER ~*~

    2022 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

    DETAILS:

    NOVEMBER: The Problem of Alzheimer's Disease: How We Caused It, How We Can Solve It
    with 2022-23 COWAN-MAYDEN SPEAKER: Jason Karlawish, MD
    In 2020, an estimated 5.8 million Americans had Alzheimer disease, and more than half a million died because of the disease and its devastating complications. 16 million caregivers are responsible for paying as much as half of the $226 billion annual costs of their care. As more people live beyond their seventies and eighties, the number of patients afflicted by Alzheimer disease will rise to an estimated 13.8 million by 2050.

    In this Evening Ethics discussion, Jason Karlawish, MD will lead a discussion of evolving public views about Alzheimer disease and other causes of dementia.  Dr. Karlawish is Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania, and Co-Director of the Penn Memory Center, where he focuses on the care of persons with dementia.  The evening’s session will draw from his recent book, The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It (St. Martin’s Press, 2021), wherein he describes how public ideas about dementia have changed, leading to gradual recognition that Alzheimer disease and related conditions represent a public health crisis.  He will review the dramatic expansion in research about these conditions over the last several decades, recent breakthroughs that may eventually lead to meaningful treatment, and finally consider strategies for how patients and their families can, if adequate social supports are available, learn to live with dementia.  These topics raise important ethical questions regarding how physicians, healthcare systems, and societies should change their approach to caring for persons with dementia.

    BACKGROUND READING:
    This event is co-sponsored by the Center for Health Ethics, Arts, and Humanities (CHeEtAH) and the Spencer S. Eccles Health Sciences Library (EHSL)
    OCTOBER: Encountering Chinese Medicine, Expanding Medical Ethics
    with: Judith Farquhar, PhD
    Our collaboration with the Utah Humanities Book Festival allows us to bring anthropologist Judith Farquhar to discuss Traditional Chinese Medicine (TCM). Her latest book, Way of Life: Things, Thought, and Action in Chinese Medicine, began as the Terry Lectures at Yale University, a lecture series exploring religion, science, and philosophy. As a longtime scholar of Chinese medicine and cultures, Farquhar will discuss, from a TCM perspective, what many Chinese doctors consider to be the root of medicine: humanism. “Let the body of the patient be your respected teacher,” advice from Zhang Taiyan, who wrote about modernizing Chinese medicine, may sound familiar to health care professionals and learners of all traditions.

    During this Evening Ethics discussion, we will focus on ethical questions and issues raised by TCM for all medical practitioners and patients. For example: Can a system of medicine ever be comprehensive or complete? How does any diagnostic process manage uncertainty? Where do health, healthiness, and life-generating qi fit into experiences of illness and cure? What if knowledge is practice and healing is a mode of existence?

    BACKGROUND READING:
    This event is co-sponsored by the Center for Health Ethics, Arts, and Humanities (CHeEtAH) and the Utah Humanities Book Festival
    SEPTEMBER: Chronic Illness as New Territory in the Kingdom of Illness
    with: Meghan O'Rourke
    In her new book, The Invisible Kingdom: Reimagining Chronic Illness, Meghan O’Rourke traces the history of Western definitions of illness to show how inherited ideas of cause, diagnosis, and treatment have contributed to what she calls a silent epidemic. Millions of Americans suffer from chronic conditions, including autoimmune diseases, post-treatment Lyme disease syndrome, and long COVID. Because these illnesses resist easy description or simple cures, patients are often unrecognized and undiagnosed. They also can be marginalized, particularly if they belong to underserved populations: BIPOC, LBGTQ+, the poor, and women.

    O’Rourke, editor of the literary quarterly The Yale Review and a lecturer at Yale University, draws on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts. Her writing has appeared in The Atlantic MonthlyThe New Yorker, and The New York Times. Her first nonfiction book, The Long Goodbye (2008), examines grief as a taboo subject in contemporary America. She has also published three volumes of poetry.

    BACKGROUND READING:
    This event is co-sponsored by the Center for Health Ethics, Arts, and Humanities (CHeEtAH) and the Utah Humanities Book Festival
    AUGUST: Prevention, Progress, and Persistent Disparities: Ethical Dilemmas and Child Mortality
    with 2022-23 HEALTH HUMANITIES SPEAKER: Perri Klass, MD
    Perri Klass, MD, our 4th Annual Health Humanities Lecturer, is a prolific physician-author who writes medical journalism, creative nonfiction, and fiction. During her visit, she will discuss her latest book, The Best Medicine: How Science and Medicine Gave Children a Future, in which she shows how the decline in infant and child mortality has transformed parenting and society as well as medical practice. Dr. Klass weaves stories of pioneering women physicians, public health advocates, and scientists with poignant accounts of historical parents, such as Abraham and Mary Lincoln, who suffered the deaths of their children.

    A professor of pediatrics and journalism at New York University, Dr. Klass contributes weekly columns on childhood to The New York Times and has published medical journalism in HarpersThe AtlanticThe Washington PostThe Wall Street JournalThe New Yorker, and The New England Journal of Medicine.

    Her own experiences as a medical trainee—at Harvard Medical School and Children’s Hospital, Boston—inspired two early books: A Not Entirely Benign Procedure: Four Years as a Medical Student (1987), and Baby Doctor: A Pediatrician’s Training (1992); each was reissued as a classic in 2010. When her son Orlando applied to medical school, she wrote Treatment Kind and Fair: Letters to a Young Physician (2007), which was gifted to U of U students at their White Coat Ceremony.

    Questions to consider as you read the background chapter and article below:
    • What lessons can we learn from Klass’s historical account of how public health, science, and medicine worked together to transform child mortality that can be applied today to better deal with the pandemic?
    • Klass cites racial inequalities in child and maternity mortality, epidemic gun violence, pollution, and environmental toxins as current threats to children’s safety. What roles should medicine and public health take in combating these?
    BACKGROUND READINGS:
    This event is co-sponsored by the CHeEtAH (Center for Health Ethics, Arts, and Humanities) and the University of Utah's Edna Anderson-Taylor Communication Institute
    JULY: The Implications of the Supreme Court’s Abortion Decision
    with Leslie P. Francis, PhD, JD 
    The leak of a draft majority opinion for the Supreme Court in Dobbs written by Justice Alito and overruling Roe v. Wade brought shock waves both for what it said and for what the leak may have revealed about current thinking at the Court. The draft opinion, however, was just that: a first draft. By the time of this Evening Ethics Discussion, we expect that the Court’s final decision will have been issued. We will know whether the Court has decided to abrogate the viability line, overruling only Casey, or whether the Court has also overruled Roe, holding that there is no fundamental right to reproductive choice. Whichever way the Court goes, the decision will leave open legal and ethical issues for providers.

    In this Evening Ethics, we will focus on the ethical issues for providers raised by the Dobbs decision, however it comes out.  For example: How will contraceptive care be affected?  Miscarriage care? Fertility care? What issues will arise with respect to medication abortion or counseling patients about the availability of abortion across the border in Nevada? Will new problems of privacy emerge for patients and providers?

    JUNE: The Story Matters: Listening to patients is the foundation of diagnosing terminal anorexia nervosa
    with Jennifer L. Gaudiani, MD, CEDS-S, FAED
    At the core of all healing professions is the art of listening to a patient's narrative as a responsive and connected partner. This has often been lost in the demands of the 8-minute visit and the safer, clearer, more objective data obtained through the wonders of modern measurement, and yet the patient's story as they choose to reveal it always gives us the very best and most relevant information. Dr. Jennifer Gaudiani is an internist who specializes in eating disorders (and former English major) who recently wrote the first paper addressing the topic of terminal anorexia nervosa directly, after having had the privilege of caring for three patients who died of their eating disorder.

    In this CHeEtAH discussion group, she will give more background on this complex topic as a means of continuing to advocate for this rare and underserved population of patients; frame the issue as fundamentally relating to questions of mental health stigma and decision making, body autonomy and the right to choose one's destiny; and keep coming back to the precious gift of the patient's story.

    BACKGROUND READING:
    MAY: Elegies as Creative, Ethical Expressions of End-of-Life Planning
    with Kimberly Johnson, PhD, MFA
    With COVID, we have had to confront our denial of death, prevalent for decades in American culture including health care.  Too often, death is regarded as the failure of medicine, if not the fault of individual providers entrusted with the lives of patients.  “It’s natural and perhaps instinctive to want to look away from mortality, to deny its existence,” writes Sunita Puri, MD, a palliative medicine physician and author of That Good Night:  Life and Medicine in the Eleventh Hour.  Instead, she calls us to “examine, rather than bury the loss and grief around us, even if—especially if—it is not our own.”

    Perhaps that is why we see the revival of the elegy. This poetic form, dating to ancient Greece, not only mourns the death of a person but creates space for our grief during the pandemic. It “performs an essential caretaking, both intimate and public, of our dead,” claim David Sherman and Karen Elizabeth Bishop in a recent Washington Post article.

    To write about death, though, is to write about life. That’s what we do when we fill out the Utah Advance Health Care Directive:  we write the name of another who will speak for us when we cannot.  It is a difficult task, asking us to think deeply about our life and inevitable death.

    A Utah couple has done just this with eloquence, wisdom, and love. Jay Hopler, a finalist for the National Book Award in Poetry and recipient of numerous national and international awards, is a patient at Huntsman Cancer Institute.  In 2017 when he received a terminal diagnosis, he gave himself a 24-month deadline to complete a new book of poems. His wife, Kimberly Johnson, a renowned poet and Renaissance scholar at BYU, as well as a recent Tanner Humanities Fellow at the U, independently began work on a collection of elegies, Fatal

    As we listen to Johnson read selections from their new books and hear from a panel of experts in palliative care, philosophy, and advance directives, including Anna Beck, MD and Peggy Battin, MFA, PhD, we’ll discuss:

    • How essential is inquiry into the meaning of one’s life before completing an advance directive and/or living will?
    • Should the topics of death, mortality, grief, and loss be addressed more directly in the education of health-care professionals?
    • Is the pandemic enabling us to envision new and significant roles for art in the practice of health care that may improve the lives of patients and professionals alike?
    BACKGROUND READINGS:
    MARCH: Healthcare Stories
    Our healthcare-themed storytelling event returns, featuring stories from the age of COVID, told by healthcare workers and community members whose lives were impacted by this once-in-a-lifetime pandemic.

    This event requires tickets

    This is a UtahPresents event that is co-sponsored with the CHeEtAH (Center for Health Ethics, Arts, and Humanities) and the University of Utah Health’s Resiliency Center
    JANUARY: Vaccine Hesitancy: Role of Moral Values, Political Beliefs, and Conspiracy Theories
    with 2021-22 DAVID GREEN MEMORIAL SPEAKER: Alyssa Burgart, MD, MA, FAAP
    Vaccine hesitancy can encompass a rich tapestry of beliefs, with individual patients and their families influenced by a variety of forces. Understanding the underlying causes of hesitancy can help clinicians identify barriers to vaccination in ways that preserve the patient/clinician relationship and strengthen trust. We will explore the roles of moral values, belief in conspiracy theories, and political beliefs in sharing vaccine acceptance/hesitancy/refusal. Participants may bring their experiences with vaccine hesitancy, and we can explore the ethical dimensions of these important, public health conversations.
    Three articles selected to spark conversation:

    2021 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered
    DETAILS:
    FEBRUARY 4: Disability, trust and marginalization in precision medicine research
    with May Sabatello, LLB, PhD
    Precision medicine research is gaining momentum across the healthcare landscape in the U.S. and elsewhere. Although in its infancy, precision medicine research holds promise for tailoring disease diagnosis, treatment and prevention to individual variability in genes, environment, and lifestyle. It is also hoped that precision medicine research will curtail the deep health disparities that have plagued the country; indeed, precision medicine is increasingly viewed as the new, future-looking healthcare model for improving individual and public health. These promises may be particularly salient for people with disabilities who can be key beneficiaries of precision medicine research but often experience health disparities.

    This presentation will share findings from a national study that was conducted in the U.S. that explored interest in and barriers to participation in precision medicine research among people with disabilities. Our findings indicate that marginalization may have significant implications for the success of ongoing efforts to advance precision medicine research and that (dis)trust may play a key role in views about participation in precision medicine research. Better understanding of the unique barriers faced by such groups can facilitate the ultimate goal of precision medicine research to translate findings from research to bedside and public health benefits.

    Maya Sabatello, LLB, PhD joins us from Columbia University where she is Associate Professor of Medical Sciences (in Medicine), Center for Precision Medicine and Genomics, Department of Medicine, Associate Professor of Medical Sciences (in Medical Humanities and Ethics), Division of Ethics, Department of Medical Humanities and Ethics, and Co-Director, Precision Medicine: Ethics, Politics and Culture Project.

    There will be no background readings for this session
    This Genetics Hot Topics Evening Ethics is a collaboration with UCEER
     
    FEBRUARY 24:  Mend Re-examining Racism in Medical History through Contemporary Poetry
    with Kwoya Fagin Maples
    For a video reading of Kwoya Fagin Maples from this Evening Ethics

    Mend, a unique poetry collection by Kwoya Fagin Maples, presents the history of medical experimentation upon which obstetrics and gynecology are based from the perspective of Black women. In her 2018 award-winning collection, Maples has written persona poems in the voices of three enslaved Black women - the only ones named from among the many operated upon by J. Marion Sims, revered by many as the of “father of gynecology.” Her poems raise ethical questions regarding racism in medical research in the past but also in contemporary medical practice: black women are three times more likely to die from pregnancy-related causes than white females (CDC, 2019). Mend alludes to the inequities through the personal experiences of the author. In our discussion, we’ll re-examine racism in medicine, particularly ob/gyn, as well as consider the vital role poetry can play in social justice, “changing the shape of our social relations and, inescapably, our individual and collective consciousness,” as one Poetry Foundation writer claims.

    Maples will be featured virtually as our guest at Evening Ethics. She teaches in the MFA creative writing program at the University of Alabama. She has received fellowships from Cave Canem and the Alabama State Council on the Arts. Her research for Mend was funded by a grant from the Rockefeller Brothers Foundation. Maples received her MFA from the University of Alabama and has published in literary journals, including Blackbird Literary Journal, Obsidian, Berkeley Poetry Review, The African-American Review, Pluck!, Tin House Review Online and Cave Canem Anthology XIII. Her chapbook, Something of Yours, was published by Finishing Line Press in 2010.

    Background Readings for this session:

    This Evening Ethics is a  collaboration with The Office of Equity, Diversity and Inclusion, School of Medicine, Health Sciences Office of Health Equity, Diversity, and Inclusion, Eccles Health Sciences Library, Department of Obstetrics and Gynecology, Women in Health, Medicine, and Science, The Black Cultural Center, and The Resiliency Center
    March 31: The Ethics of COVID Vaccine Distribution: Who? How? What about Line-Jumpers? And what of Those Who Refuse?
    facilitated by Jim Tabery, PhD and Peggy Battin, PhD, MFA
    Vaccines are arriving, but ethical challenges about vaccine distribution are complex.  Some challenges are theoretically broad, like whether to prioritize specific groups—the elderly, the disadvantaged, younger people with medical conditions that make them more vulnerable.  Other ethical challenges reflect variations in social policy: what’s the significance of various states’ different roll-out policies, and should some of these be challenged? Should a governmental agency at any level issue “vaccine passports,” or mandate Bluetooth access to others’ covid-positive status or vaccination status?  Then there are more specific ethical questions about individual behavior: what about line-jumpers and the honor system? What about vaccine hunters?  What about vaccine hesitancy or outright refusers, even those who work in health care?  This session will explore a wide range of ethics issues arising even as the vaccines at last appear.

    Background Readings:

    April 21: Why Doctors Write: Finding Humanity in Medicine
    In a new 36-minute documentary, filmmaker Ken Brown interviews physician-writers as well as patients and medical trainees about the increasingly significant role that writing plays in medical practice and education. We will begin the session by viewing the film and follow with a panel of University of Utah writers—physicians, resident physician, and medical student—to discuss how reflective writing helps foster empathy, curiosity, compassion, observation, communication, and ethical reasoning, all necessary skills for clinicians.

    Background readings for this session:

    April 28: “Ethical Challenges in Pediatric Vaccine Clinical Trials,”
    with 2020-21 David Green Memorial Speaker: Steven Joffe, MD, MPH
    To date, the FDA has granted emergency use authorization to three vaccines—from Pfizer/BioNTech, Moderna, and Janssen—against SARS-CoV-2. However, with the exception of the Pfizer/BioNTech vaccine, which has received authorization for adolescents ages 16-17, none of these vaccines is authorized for children. The inability to vaccinate children has implications for their health, for their ability to return to school and other activities, for their parents’ ability to work, and for restoring the nation’s economic and social life. The fact that SARS-CoV-2 vaccines are not authorized for pediatric use reflects children’s limited inclusion in clinical trials of candidate vaccines. The reluctance to pursue pediatric trials of SARS-CoV-2 vaccines is due in turn to ethical concerns with and regulatory barriers to vaccine research in children, concerns that are heightened because severe COVID19 disease is rare in children. In this session, we will discuss the ethical and regulatory hurdles to conducting SARS-CoV-2 vaccine trials in children, explore the rationales for moving forward as rapidly as possible with these trials, and describe the strategies that are available to overcome the challenges.

    Background readings for this session: (for pdf’s, contact linda.carrlee@hsc.utah.edu )

    Optional:
    ******************
    For those interested, Steven Joffe, MD, will present the David Green Memorial Lecture at Pediatric Grand Rounds: “The ethics of first-in-child clinical trials” on Thursday, April 29, 2021, 8-9am
     
    SEPTEMBER 14: "What Does It Cost to Save a Life?: Weighing the Promise of Medical Technology Against Its Personal, Systemic, Ecological and Social Costs"
    with Katherine Standefer
    What if a lifesaving medical device causes loss of life along its supply chain? That's the question Katherine E. Standefer finds herself asking one night after being suddenly shocked by her implanted cardiac defibrillator. In her gripping, intimate debut memoir Lightning Flowers: My Journey to Uncover the Cost of Saving a Life, Standefer explores the true cost of her ICD--from the technology's impact on her body and life, to her harrowing experience in the American healthcare system, to her global journey into the mines and factories where the minerals in her device may have originated. In this Evening Ethics discussion, we'll explore how Standefer's complex experience as a "cyborg" and supply chain research map onto the Four Pillars of Medical Ethics, wrestling with complicated questions about harm, justice, and autonomy on both the individual and communal level. 
    Background Readings: (please contact lindacarrlee@hsc.utah.edu for readings)
    This event is co-sponsored with the Utah Humanities Book Festival
    October 7:  "Don't Let the Lion tell the Giraffe's Story": How the Curation of History Hobbles Medical Ethics
    with 2020-21 Cowan Memorial Lecturer and Priscilla M. Mayden Endowed Lecturer: Harriet A. Washington
    Harriet A. Washington is our 2021 Cowan Memorial Lecturer and Priscilla M. Mayden Endowed Speaker. In Medical Apartheid, Harriet Washington notes that Winston Churchill echoed the title’s Nigerian aphorism, observing that “History is written by the victors.’ With an eye to assessing the medical treatment of those in the African diaspora, she will evaluate the holistic ethical landscape by focusing on signal events, including within the COVID-19 pandemic. In examining ethical frameworks that have defined the parameters of moral medical issues and have justified the medical agency of those in power Washington will demonstrate how this is often achieved by ignoring pertinent events —by eliding large swaths of the history. This selective curation of history consistently elides unethical acts and must be questioned as a prelude to restoring ethical behavior in medicine.

    Background readings: (please contact linda.carrlee@hsc.utah.edu for copies of readings)

    1. How environmental racism is fueling the coronavirus pandemic by Harriet Washington (Nature, 5/19/2020)
    2. Statues that perpetuate lies should not stand by Harriet Washington (Nature, 9/21/17)
    3. African American Physicians and Organized Medicine, 1846-1968 Origins of a Racial Divide by Baker, Robert B., Washington, Harriet A., et.al. (JAMA, 7/16/2008)
    4.  Limning the Semantic Frontier of Informed Consent by Harriet Washington (JLME, Fall 2016)
    5. Flacking for Big Pharma by Harriet Washington (The American Scholar, 6/3/2011)
    6. The Well Curve by Harriet Washington (The American Scholar, 9/7/2015)
    This Evening Ethics is a collaboration with the Spencer S. Eccles Health Sciences Library (EHSL), J. Willard Marriott Library, Equity, Diversity, & Inclusion, (EDI), School of Medicine Office of Health Equity, Diversity, & Inclusion (SOM OHEDI), and The Tanner Humanities Center
    November 3:  Pandemics & Panels: What Have We Learned about Global Health Crises Through Comics? 
    with 2020-21 Health Humanities Lecturer: MK Czerwiec, RN, MA
    MK Czerwiec , RN, MA will visit Utah November 3-4 as our 3rd Annual Health Humanities Lecturer. MK Czerwiec is a nurse, cartoonist, and educator. She is the creator of Taking Turns: Stories from HIV/AIDS Care Unit 371, editor of the Eisner Award-winning Menopause: A Comic Treatment, and a co-author of Graphic Medicine Manifesto. MK regularly teaches graphic medicine at Northwestern Medical School and the University of Chicago. She co-manages GraphicMedicine.org and is the Comics Editor for the journal Literature & Medicine. See more of her work at www.comicnurse.com.
    Background Readings:
    Taking Turns https://pen.org/taking-turns-stories-hivaids-care-unit-371/
    COVID-19 Comics https://www.graphicmedicine.org/covid-19-comics/
    Optional:
    Taking Turns: Stories from HIV/AIDS Care Unit 371
    ***********************************************************************
    A second opportunity to hear MK Czerwiec:
    "Graphic Medicine: Comics As Bridge Between Humanity & Health"
    The Tanner Center Informal Talk Thursday, November 4, 9-10am The Jewel Room at the Tanner Humanities Center
    This Health Humanities Speakership is a collaboration with the Spencer S. Eccles Health Sciences Library (EHSL), Family Caregiving Collaborative/ College of Nursing, College of Fine Arts, and The Tanner Humanities Center. at the University of Utah.  We jointly welcome MK Czerweic to this evening ethics and to the 2021-22 Health Humanities Speakership series.
    December 9:  GENETICS HOT TOPICS: Ethical concerns related to direct-to-consumer genetic testing for suicide risk and other mental health conditions
    with Anna Docherty, Brent Kious, Teneille Brown, and Leslie Francis
    Most mental health conditions and symptoms are polygenic, in that their genetic risk is attributable to many gene variants with small individual effects. Even so, polygenic risk scores have been calculated for a variety of mental health conditions and symptoms, including suicide death and suicidal ideation. Some companies have already started to offer direct-to-consumer genetic tests for a variety of mental health conditions, and may soon offer to polygenic risk scores for suicide. We examine ethical and legal concerns related to this potential development and consider unique issues related to the direct-to- consumer evaluation of genetic risk for suicide.

    Background Readings:

    1. Read: “Ethical concerns relating to genetic risk scores for suicide,” by Anna Docherty, Brent Kious, Teneille Brown, Leslie Francis, Louisa Stark, Brooks Keeshin, Jeffrey Botkin, Emily DiBlasi, Doug Gray, Hilary Coon (Am J Med Genet B Neuropsychiatr Genet, Sept 1, 2021): https://onlinelibrary-wiley-com.ezproxy.lib.utah.edu/doi/epdf/10.1002/b.32871
      ( contact Shakila.Nawaz@utah.edu or Linda.carrlee@hsc.utah.edu for pdfs)
    2. Watch: https://ksltv.com/472121/utah-scientists-identifying-genes-that- may-increase-risk-to-suicide/
     Genetics Hot Topics are a collaboration with UCEER

    2020 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered
    DETAILS:
      "Asperger, Autism, and Nazi Medicine: Perspectives from a Historian" with Dr. Edith Sheffer
    January 27th is International Holocaust Remembrance Day. The Red Army liberated Auschwitz on that day in 1945, so 2020 marks the 75th anniversary. Each year URemembers brings speakers and events to honor that history. The PMEH is happy to collaborate and welcome Dr. Edith Sheffer, historian, author and senior fellow at the Institute of European Studies at UC Berkeley, to discuss her historical research on Dr. Hans Asperger and his work with autistic and disabled children in Vienna during the Nazi regime. We invite you to join us and consider the ethical questions raised by the fraught histories of Asperger’s ide-as and actions. What do we do with medical research connected to Nazi ideology? How and when does the origin of medical research matter? The suggested reading for this session is the Introduction and Chapters 6 and 7 of Sheffer’s book, Asperger’s Children: The Origins of Autism in Nazi Vienna. Contact linda.carrlee@hsc.utah.edu  for a pdf of this material.
    See URemembers website for other events in this series.
    This Evening Ethics is a collaboration with URemembers, The Office of Equity and Diversity, and the Eccles Health Sciences Library
    In Collaboration with Utah Presents: Healthcare Stories of Repair
    Healthcare: Stories of Repair, the sequel to Fall 2019’s “Healthcare: Stories of Rebellion,” will examine the idea of repair in all its meanings. What does it mean to be healed? How do we cope with the process of repair? What happens when we try to fix something that isn’t broken? This evening of stories, with some storytellers selected from the audience, will bring us together as a community to grapple with complex questions and find comfort in shared experiences.
    This is a UtahPresents event  that is co-sponsored with the Program in Medical Ethics and Humanities and the University of Utah Health’s Resiliency Center.
    This Event requires Tickets.
    Emergent Ethics Issues Around COVID-19
    Please join us for a discussion of two of the most pressing ethical issues raised by the quickly developing situation around COVID-19:  1. What do we owe people on the front line in health care?  2. If a shortage comes, how should we allocate ICU beds and ventilators?  This Evening Ethics will discuss your questions, among which we anticipate include:  What is the duty of health care providers to go to work in a pandemic? Should they still go in the absence of adequate personal protective equipment? Should their own health or family circumstances factor into the decision to go to work? When providing scare care or resources, should we give priority to the young, or to those without pre-existing conditions?  Should we give priority to first responders?  Or to those first in line?  Should we ever take people off ventilators because others come along who seem to have far better chances of survival if they can get support?  We wish—and profoundly hope—that these questions will not be presented to us in stark form.  Right now, however, it appears that the US is too far beyond the testing and contact-tracing curve, and too late with effective physical distancing, to avoid at least facing some of them.
    Background Readings :
    https://www.nejm.org/doi/full/10.1056/NEJMsb2005114?query=featured_home
     https://www.nytimes.com/2020/03/23/opinion/coronavirus-ventilators-triage-disability.html
    Due to necessary physical distancing, this session will be held via the Zoom meeting platform. Questions and comments will be facilitated through the chat feature on zoom, which will be explained at the beginning of the meeting. 
    "Emerging Ethical Issues in Psychedelic Research" with Ben Lewis, MD
    We are experiencing a renaissance in the scientific study of psychedelics. A prolonged political and social moratorium on the scientific and psychotherapeutic study of this class of compounds is recently lifting, resulting in a dramatic upsurge in clinical research. Recent work in psychiatry- while involving small studies and limited control groups - has nonetheless been remarkably promising with large magnitude therapeutic effects after even single drug administrations, particularly for existential distress or anxiety in cancer patients (Griffiths et al 2016, Ross et al 2016, Grob et al 2011), smoking cessation (Bogenshutz et al 2015, Johnson et al 2014, 2017), treatment-resistant depression (Osorio et al 2015), alcohol use disorder (Krebs and Johansen, 2012) and OCD (Moreno et al 2006).
    These emerging treatments raise a number of ethical questions. For instance, how ought we to think about the relative importance prior personal experience with psychedelics holds for psychedelic-assisted psychotherapists? And what issues are at stake with any kind of disclosures in this regard given current legal status? What issues arise in thinking through the possible harms of psychedelic tourism - i.e. the flocking of Westerners to S. America for ayahuasca ceremonies? Are there ethical ramifications at stake in the medicalization of this class of compounds, particularly in light of indigenous cultural use and/or the ways in which this set of treatments may interface with Big Pharma?
    In this presentation Ben Lewis, MD, will briefly survey some of these questions but will devote the majority of his time to discussing what might be termed 'epistemic risks' at stake with the therapeutic use of psychedelics. Michael Pollan alludes to this set of concerns in his recent book How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence:" It’s one thing to conclude that love is all that matters, but quite another to come away from a therapy convinced that “there is another reality” awaiting us after death ... or that there is more to the universe—and to consciousness—than a purely materialist world view would have us believe. Is psychedelic therapy simply foisting a comforting delusion on the sick and dying? "(Pollan 2015). The worry here is that mystical experiences are- in some sense- spooky and if mystical experience is involved in the causal chain for therapeutic change (as suggested by recent clinical research) there is a risk of violating our commitments to naturalism, or inducing non-naturalistic belief states that may carry unintended harms. This possible ‘Pascal’s Wager’ with psychedelic administration has a host of implications, ethical and otherwise, particularly in the context of vulnerable populations.
    Background reading: ”The Trip Treatment” by Michael Pollan ( https://www.newyorker.com/ magazine/2015/02/09/trip-treatment) 
    Optional readings:
    For pdfs of readings, contact linda.carrlee@hsc.utah.edu
    Race, Research, and the Coronavirus 
    The Centers for Disease Control and Prevention recently published data demonstrating that Black Americans have been hospitalized with COVID-19 at higher rates than other racial and ethnic groups. Further, data also identified that Black Americans are dying at rates higher than their proportion of the population.   Some of the nation’s leading experts in equity, research and healthcare identified pre-pandemic inequities as implicated in this disproportionate burden on Black Americans during the pandemic. Recent protests in response to George Floyd’s death further identified structural bias and discrimination.  As our institution moves forward with equity, diversity and inclusivity research initiatives, discussion from our institutional community is needed to ensure we identify the ethical, legal and social complexities identified through this pandemic and the type of research needed to address these inequities associated with race in our community.  This discussion will consider inequities and how to address them in both COVID-19 and other research at the University of Utah.
    Discussion will be facilitated by Erin Rothwell, PhD and Leslie Francis, PhD, JD
    Background Readings:
    https://www.nytimes.com/interactive/2020/07/05/us/coronavirus-latinos-african-americans-cdc-data.html
    https://www.cdc.gov/mmwr/volumes/69/wr/mm6928e1.htm
    In Collaboration with Utah Humanities: "The Case for Universal Health Care" with David Colton, PhD, MPA, MEd
    Except for the United States, all developed nations provide their citizens with quality, affordable health care. Even with Medicare, Medicaid, SCHIP, and the Affordable Care Act, nearly 25 million Americans do not have health insurance.   Millions that do can only afford high deductible plans, which may prevent them from accessing all but emergency care.
    The U.S. is divided on political, fiscal, and religious grounds particularly in regard to the role of the social contract in governance.  Conservatives believe that health care should be an individual responsibility with costs managed through the free market and little or no government.  Liberals believe that assuring health care is a shared responsibility, though the government guarantees all have access.  Because of this polarization, there has been limited effort to discuss health care from the perspective of our values and expectations as a society.
    Background Reading: The Case for Universal Health Care, chapter 11: The Ethical & Moral Case for Universal Health Care (pdf)
    Optional additional readings: Liberal and Conservative Representation of the Good Society: A (Social) Structural Topic Modeling Approach.  Sterling, Joanna, Jost, John, and Hardin, Curtis. Sage Open Publications, April-June 2019, 1-13.
     When It Comes to Universal Health Care, What Would Jesus Do? December 19, 2019
    Contact linda.carrlee@hsc.utah.edu for pdf.
    This Evening Ethics is a collaboration with Utah Humanities
    uh_bf_logo_horz.jpg
    We jointly welcome author, David Colton, to lead this Evening Ethics Discussion and to the Book Festival Presentation on Friday 9/25/2020 at 5:30pm.  Sign up for the Book Festival Event.
    In Collaboration with the Spencer S. Eccles Health Sciences Library: "Mental Illnesss, Mass Shootings, and the Politics of US Firearms" with Jonathan M. Metzl, MD, PhD, 2020 Cowan Memorial Lecturer & Priscilla M. Mayden Endowed Lecturer
    Dr. Jonathan M. Metzl, MD, PhD, our 2020 Cowan Memorial Lecturer and Priscilla M. Mayden Enowed Lecturer, is the Frederick B. Rentschler II Professor of Sociology and Psychiatry, and the director of the Department of Medicine, Health, and Society, at Vanderbilt University in Nashville, Tennessee.  Dr. Metzl will discuss his work as a psychiatrist and scholar of gun violence, race, and mental illness.  Please join us for an interactive discussion that will address questions such as: How are attitudes and debates about guns in the US intertwined with race? How are race and mental illness connected?  What is the medical provider's role in addressing gun violence, including the aftermath of mass shootings? Who benefits from polarized discussions about guns and gun violence?  What are the best ways to discuss mental illness in the context of gun violence?
    Background reading for this session:
    https://www.the guardian.com/us-news/2019/aug/08/racism-gun-control-dying-of-whiteness
    Also recommended: Dr. Metzl's book, Dying of Whiteness: How the Politics of Racial Resentment is Killing America's Heartland
    In Collaboration with Utah Humanities: “Solving the Opioid Crisis isn’t just a Public Health Challenge—It’s a Bioethics Challenge” with Travis N. Rieder, PhD
    If you have learned about America’s opioid crisis primarily from the media or politicians, you’d be forgiven for thinking that the problem is a rather simple one. We must stop excess prescribing of opioids and prevent heroin from coming in over the southern border or fentanyl from coming through the US Postal Service from China. The problem is not simple, however. This laser-like focus on drug supply is an outdated War on Drugs approach to fighting addiction and overdose, and it simply doesn’t work. Indeed, it often makes things worse. For this reason, I argue that it takes genuine effort to determine what we should do in response to America’s drug problem. That is: we need to do ethics. Solving America’s opioid crisis is not a problem just for public health, or for medicine; it’s a problem for ethics and policy. And on my view, in order to determine what we should do, we need to better understand the nature of drugs and addiction. The goal of this discussion is to touch on all of these topics.
    Background Readings: 
    1. “What Chronic Pain Patients are Deeply Afraid Of,” in the NYTimes, here: https://www.nytimes.com/2019/10/31/opinion/opioid-crisis-addiction.html
    2. “Solving the Opioid Crisis isn’t just a Public Health Challenge—It’s a Bioethics Challenge,” forthcoming from the Hastings Center Report
    Recommended Reading for those Interested in Dr. Rieder’s broader story and view: 
    1. In Pain: A Bioethicist’s Personal Struggle with Opioids
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    We jointly welcome author, Travis N. Rieder, to lead this Evening Ethics Discussion and to the Book Festival Presentation on Tuesday, 10/06/2020 at 5:30pm.  Click here to sign up for the Book Festival Event.
    In Collaboration with the Department of History, Health Sciences Resiliency Center, College of Humanities, College of Health, and Tanner Humanities Center at the University of Utah: "Slow Medicine, Ethics, and the Case of Mrs. C." with Victoria Sweet, MD, 2020 Medical Humanities Lecturer
    Victoria Sweet, MD, is an associate clinical professor of medicine at the University of California, San Francisco. She is the award-winning author of God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine and Slow Medicine: The Way to Healing. In these two books, Sweet argues for a new approach to medical care that takes into account valuable lessons learned from pre-modern practices. Sweet advocates for care based on viriditas, Hildegard of Bingen’s concept of the healing power of nature, onto which she grafts respect for modern medicine through engaging stories drawn from her own medical training.
    Please contact linda.carrlee@hsc.utah.edu for background reading and zoom link for this session.

    2019 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

     

    “Is It Ethical for Physicians to Strategically Lie to Third-Party Payers On Behalf of Their Patients?” with Saundra Buys, MD, and Susan Sample, PhD, MFA
    Deception, or the intentional falsification of information, is not typically considered an acceptable moral norm in American society. Yet when a patient’s survival depends upon an unaffordable, expensive procedure or prescription, the ethical issues become complicated. Physicians are trained to put their patients’ interests first—to advocate for them. Insurance policies are guided by a different ethic: to restrain burgeoning healthcare costs and to manage the use of limited resources. When, if ever, are physicians justified to withhold information or provide inaccurate information to insurance companies in order for patients to receive what their doctors consider to be medically necessary care? Under what conditions does the rule of patient priority take precedence over rules of truthfulness and disclosure, both of which are considered foundational in health care? Should third-party payers be regarded as not having the right to certain information, particularly if insurance coverage policies seem unjust? Are there workable solutions that might help relieve these ethical tensions between physicians and the third-party payer financial gatekeepers? Please join us for what is sure to be an interesting discussion. The background reading for this session can be found at:
    https://www.nytimes.com/2018/06/21/well/the-strategic-lies-of-oncologists.html 
    “Informed consent: enduring challenges and opportunities” With Jeffrey Botkin MD, MPH, 2019 David Green Memorial Speaker
    The 70th anniversary of the Nuremberg Code was celebrated in 2017. The code is a set of principles intended to guide the conduct of research in the aftermath of the Nazi experiments during WWII, with the first principle reading, “The voluntary consent of the human subject is essential.” The year 2019 will be the 40th anniversary of the Belmont Report, drafted in the aftermath of the Tuskegee syphilis experiments to provide a foundation for ethics and regulations governing human subjects research. Yet, despite decades of experience, ethical analysis, and regulatory oversight, informed consent for research is commonly described as broken. In this discussion, we will discuss the current limitations of the consent form and process and the challenges to achieving informed decision-making in clinical research and clinical care. Several strategies to improve the form and process will be discussed. For background reading before this discussion, please contact linda.carrlee@hsc.utah.edu
    “Ethical and practical challenges with shared decision making in serious illness” with 2019 Cowan Memorial Lecturer, Douglas B. White, MD, MAS
    This session will focus on the ethical and practical complexities of shared decision making between clinicians and surrogate decision makers of patients with advanced illness. For example, although there is broad support that surrogates should be involved in making preference sensitive medical decisions near the end of life, there remains controversy about how best to accomplish this. Moreover, there are legitimate questions about what It means to truly “share” in decision making with patients, and whether there are limits to shared decision making for incapacitated patients near the end of life. Background article for this session is Shared Decision Making in ICUs: An American College of Critical Car Medicine and American Thoracic Society Policy Statement. Kon AA, Davidson JE, Morrison W, Danis M, White DB; American College of Critical Care Medicine; American Thoracic Society. (Crit Care Med. 2016 Jan;44(1):188-201.) (Contact linda.carrlee@hsc.utah.edu for a copy of this article.)
    Our 2019 Cowan Memorial Lecturer is Douglas B. White, MD, MAS. Dr. White is University of Pittsburgh Medical Center (UPMC) Chair for Ethics in Critical Care Medicine, Professor, Departments of Medicine and Critical Care Medicine, University of Pittsburgh School of Medicine, and Director, Program on Ethics and Decision Making in Critical Illness, CRISMA Center, Department of Critical Care Medicine.
     "Exploring Frida Kahlo's Artistic Expression of Her Body to Reclaim the Art of Medicine" with Dani Golomb, 3rd year medical student and Susan Sample, PhD, MFA
    Dani Golomb, a third-year medical student at the University of Utah, presented a unique poster in February 2018 at the Mount Sinai Third Annual Medical Student Conference, “Becoming a Physician:  Ethical Challenges in Medical Education.”  Golomb drew upon Marxist theory to understand how medicine has become a commodity that negatively impacts patient care.  As she writes:
    There is a transformative magic that does its work under the veil of capitalism.  As Karl Marx wrote, workers imbue the objects of their labor (the commodities) with their own humanity.  As a result, the commodities become animated, and the workers, objectified.  Under the guise of modern health care and medical education, a similar phenomenon occurs.  The insistence on evidence-based medicine and outcome-driven treatment goals causes patients to become objects while their diseases become life-like.  The art of medicine is lost.
    Medical students are the next generation of doctors, so it is essential that we explore, analyze, and deconstruct the “objectivity” that engulfs our health-care and education systems. We must take meticulous care to reclaim the art and profound responsibility of medicine.  For both guidance and inspiration, I look to the oeuvre of Frida Kahlo.  The Mexican artist was no stranger to illness or pain—scoliosis, polio, and most significantly, a near-fatal bus accident.  What launched “her artistic voice as a painter of personal traumas and self-realization,” however, was a devastating and complicated abortion she had while living in Detroit in 1932. She struggled with injuries the rest of her life, attempting to integrate her suffering with the help of both her doctors and her art. 
    Golomb will present artwork by Kahlo and her husband, Diego Rivera, the well-known muralist, to begin our discussion.  What do we learn from their paintings as to how medical trainees as well as health-care providers can return dignity to our patients and work with them toward healing their suffering?  How does their art challenge us to be accepting of a patient’s humanity, individuality, and intrinsic uncertainty?
    For Background readings, Please contact linda.carrlee@hsc.utah.edu
    Ethical Issues Surrounding Medical Marijuana
    Last December, the Utah State Legislature enacted a replacement bill for Prop 2.  The Utah Medical Cannabis Act presents many complex issues for health care systems.  These include whether to offer medical cannabis, which providers should become qualified medical professionals for medical cannabis, how to certify patients, and whether to make available to patients information about whether medical cannabis is offered.  Because a number of institutions must be in place before the Act is fully operational, health care systems will also face ethical issues in managing the transitional period.  For example, the Act requires establishment of a Compassionate Use Board to consider approvals for medical cannabis of patients who do not have a listed qualifying condition or who are under 21 but who seek approval for their use of medical cannabis.  
     As background preparation for this session, the University of Utah's statement can be found at  https://healthcare.utah.edu/medical-marijuana/ You might also want to look at this, reporting on Intermountain, https://www.deseret.com/2019/2/14/20665864/intermountain-healthcare-gives-its-utah-doctors-ok-to-recommend-medical-marijuana. In addition, for a fact sheet from the Utah Department of Health on the Medical Cannabis Act that may be helpful contact linda.carrlee@hsc.utah.edu
    Being White in Healthcare – Exploring Biases, Privilege, and Outcomes with Amy Cowan, MD and Susan Sample, PhD, MFA
    This discussion is intended to recognize how pervasive systemic racism is in our society, shaping our lives. We will explore what we do that supports racism and how we can interrupt it.  In medicine, white is the default, considered the "norm"; often being white is never mentioned. Our discussion will flip the script, exploring what it means to see white.  Participants will view photographs from Myra Greene’s work, My White Friends, as an entry point for discussion. Can surroundings, spaces and environments like the hospital, be white? And why does talking about being white make us uncomfortable?  Focusing on the healthcare setting, data on under-represented students in medical school and residency, and current pay discrepancy among women and people of color,  we will discuss how our biases play a role and what happens to our patients in all of this. 
    Suggested Background Readings:
    Going Blind: Coming out of the dark about vision loss--A film screening and Q&A with Film Director, Joseph Lovett
    This Evening Ethics is presented in collaboration with the Center for Disability & Access, Disability Studies Program, Moran Eye Center, National Center for Veterans Studies, and the Spencer S. Eccles Health Sciences Library (EHSL).
    Going Blind is a unique documentary film by Peabody Award-winning producer/director Joseph Lovett that increases public awareness of sight loss and low vision issues profoundly affecting the lives of more and more people around the world.  It tells the stories of everyday people and how they live successfully in today’s world with vision loss.  Each has a fascinating story about dealing with the vision loss caused by sight-robbing diseases, infections, and accidents.  The film looks at each aspect of vision loss, detecting, treating, and coping, from the point of view of the patient.
    In a review of the film, the British Journal of Ophthalmology describes the film as “an uplifting documentary…that instills inspiration to lead a productive life” and the Washington Post stated, “Going Blind encourages and inspires people to take action to preserve, prolong, and maximize the precious gift of sight…”
    About Joseph Lovett:  Joseph Lovett is an award-winning filmmaker, whose films have informed, engaged and inspired people into action. Joe’s film, Going Blind, and its Outreach Campaign, Going Blind and Going Forward, have ignited a global movement of individuals, grassroots organizations and medical professionals sponsoring screenings to raise awareness and to improve access to vision enhancement services.
    Misfits between the law and people with opioid use disorders with Leslie Francis, JD, PhD and Teneille Brown, JD
     
    PARCKA and Evening Ethics will discuss some of the ways in which current federal and state law do not mesh well with the treatment needs of people with opioid use disorder. Professor Teneille Brown will explain how drug court functions, the advantages of drug court for people who are charged with non-violent offenses and who suffer from addiction, and discuss stigmas and anti-discrimination law in opioid use disorder.  Professor Leslie Francis will discuss problems with employment discrimination and housing discrimination law because current drug use is not considered a disability and people may lose housing subsidies if they or their relatives plead no contest to charges involving drugs. 
    The Evening Ethics session has two background readings: (1) ILLEGAL SUBSTANCE ABUSE AND PROTECTION FROM DISCRIMINATION IN HOUSING AND EMPLOYMENT: REVERSING THE EXCLUSION OF ILLEGAL SUBSTANCE ABUSE AS A DISABILITY (Leslie Francis, Utah Law Review, 2019) and (2) Social Stigma Toward Persons With Prescription Opioid Use Disorder: Associations With Public Support for Punitive and Public Health–Oriented Policies (A. Kennedy-Hendricks, et.al., Psychiatric Services 68:5, May 2017)
    This Evening Ethics is presented in collaboration with the Division of Epidemiology's Program for Addiction Research, Clinical Care, Knowledge, and Advocacy (PARCKA) The noon-1PM, October 15th  PARCKA Parley session will have a policy emphasis; the October 22nd,  5:30pm-7:00pm Evening Ethics session will have an ethics emphasis. Each session will stand alone, but build on each other, so that you can attend one or both.
    "Patients, Parents, and Professionals: Ethical Issues in the Treatment of Trans Adolescents" with 2019-20 David Green Speaker, Armand H. Matheny Antommaria, MD, PhD, FAAP
     Armand H. Matheny Antommaria, MD, PhD, FAAP, Director, Ethics Center, Lee Ault Carter Chair of Pediatric Ethics, Cincinnatti Children Hospital, Attending Physician, Division of Hospital Medicine, Associate Professor, University of Cincinnatti Department of Pediatrics, will be our 23rd Annual David Green Lecturer.
    Medical treatment of trans adolescents is controversial. Proponents of hormonal and surgical treatment emphasize the high rates of depression and suicide in this population. Opponents contend that evidence supporting the current standard of care is lacking and highlight individuals who regret their treatment. Our discussion will focus on ethical issues such as the following: What are the potential benefits, risks, and alternatives to treatment with puberty blockers and gender affirming hormonal and surgical treatment? What does reversibility mean in this context and what role should it play in the ethical analysis? May health care professionals refuse to treat trans patients and what constitutes medical neglect in this domain?
    For background readings before this discussion, please contact linda.carrlee@hsc.utah.edu
                                                                      ********
    For those interested, Dr. Antommaria will be presenting the David Green Lectureship, “Establishing Goals of Care and Ethically Limiting Treatment” at Pediatric Grand Rounds the next morning, Thursday, December 5th, 2019, 8 am, Primary Children’s Hospital, 3rd floor Auditorium.
     
    Polygenic Risk Scores for Embryo Selection: Making a Healthier Human, or a False Promise? with Erica B. Johnstone, MD & Erin Rothwell, PhD
    Polygenic risk scores have been developed from genome-wide association studies, and incorporate data on numerous genetic polymorphisms to predict the chances that an individual will develop a given disease.  The original goal of this tool was to enable early intervention for individuals at high risk of disease, in the hopes of preventing illness or mitigating its consequences.  This technology can now be applied to human embryos.  Will this technology offer parents the opportunity to prevent disease in their children, in the vein of preimplantation genetic diagnosis for Mendelian disorders such as spinal muscular atrophy? Or are children placed at risk by premature adoption of an intervention with uncertain outcomes? When and how should polygenic risk scores for embryo selection be offered? How should this innovation be evaluated before making it clinically available?
    Background Reading:
    https://www.biorxiv.org/content/biorxiv/early/2019/05/05/626846.full.pdf
    "Caring--How can we work together to address drug shortages and drug costs?" with Erin Fox, PharmD, BCPS, FASHP and Jim Ruble, PharmD, JD
    Drug shortages and high drug prices can both affect patient access to criti-cally needed medications. Medications cannot be effective, if patients can’t obtain needed treatments. In some cases, shortages and high prices lead to rationing, as well as tension in patient-provider relationships. Our discussion will focus on some of the ongoing actions to improve drug shortages and high prices. We will also provide some information about how patients can lower their drug costs, and communication tips for dialogue between clinicians and their patients.
    Recommended background readings for this discussion:
    For an overview on shortages: https://www.mayoclinicproceedings.org/article/S0025-6196(13)01043-4/abstract
    For the most current stats on shortages: https://www.ashp.org/Drug-Shortages/Shortage-Resources/Drug-Shortages-Statistics
    For an overview on drug pricing: https://hbr.org/2017/04/how-pharma-companies-game-the-system-to-keep-drugs-expensive
    Healthcare: Stories of Rebellion (UtahPresents Collaboration)
    Following last season’s powerful performance, our healthcare-themed storytelling event returns this year with the first of two new topics. Healthcare: Stories of Rebellion will highlight how we navigate illness, treatment, and the “way it’s always been done.” With some storytellers selected from the audience, the evening will include prepared and impromptu true stories about making different choices, pushing back, going against the grain, and finding our own way. This is a UtahPresents event that is co-sponsored with the Program in Medical Ethics and Humanities and the University of Utah Health’s Resiliency Center.
    "STUMPED: An extraordinary journey through tragedy, comedy and restoration"--film viewing and Q & A with Will Lautzenheizer
    Will Lautzenheizer, after losing his arms and legs to a deadly infection, became the third patient to undergo a double-arm transplantation at the Brigham and Women’s Hospital in Boston. The documentary, STUMPED, chronicles how Will copes with the loss of his filmmaking career by pursuing stand-up comedy, how he navigates personal relationships, and how he transforms, physically and spiritually, with newly transplanted arms. STUMPED was filmed over four years. Natalia Washington, PhD and Angela Smith, PhD will facilitate discussion of the many ethical issues faced in this journey of pioneering medicine .
    Will Lautzenheizer will skype in to join us for this discussion and to answer questions. Please join us and add your questions and thoughts to a long list of possible ethics topics, including informed consent in VCA transplants, cultural representations of disability, ableism, disability misconceptions that may affect decision making, resource allocation for cutting edge technological devices, the use of anti-rejection medications for non-life threatening situations, the role of insurance decisions in healthcare, federal funding for after emergent care, the role of comedy in healing, and the burden of care on families and other caregivers.
    This Evening Ethics is a collaboration with University of Utah’s Burn Center and the Eccles Health Sciences Library.

    2018 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

     

    “OMG, What R They Thinking: Adolescent Refusals of Important Medical Care”

    In recent years, several cases involving adolescent patients refusing life-saving treatment (blood transfusions, cancer treatment) have been covered by national media outlets, raising questions about the role of the adolescent in medical decision-making. Should adolescents be allowed to refuse life-saving medical treatment? Does it matter whether their parents agree or disagree with their decision? Does the age of the adolescent matter? Using several case studies, we will discuss whether adolescents, as a rule, possess capacity of sufficient quality that their decisions should be respected even in the case of life-altering medical decisions. This session will touch on the traditional approach to determining when adolescents should have their decisions respected (including what the American Academy of Pediatrics Committee on Bioethics has said), the evolving understanding of adolescent brain development, and the implications of that “brain science” for how we should understand adolescent decision-making capacity. Please contact linda.carrlee@hsc.utah.edu for a pdf of the background reading for this event, “Adolescent Refusal of Lifesaving Treatment: Are We Asking the Right Questions?” by Douglas Diekema, MD, MPH. (Adolesc Med 022 (2011) 213228).

    “A Terror Way Beyond Falling: Suffering, Suicide, and Physician Aid-In-Dying”

    “The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’, can understand the jump. Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling.” -David Foster Wallace (2009), Infinite Jest, pg. 696.

    In late 2016 the American Psychiatric Association (APA) stated that psychiatrists ought not participate in physician aid in dying (PAD) or euthanasia for non-terminal illnesses. This practice already occurs in some European countries. As Mark Komrad, a psychiatrist on the APA’s national ethics committee, explained, the organization was concerned about this practice for multiple reasons: that it communicates that there is no hope for persons with severe suffering due to psychiatric illness, that persons with psychiatric illness have impaired decision-making capacity, and that judgments about whether suffering is interminable depend upon patients’ assessments of whether treatments like ECT are acceptable, even though these assessments could be controversial or misinformed. In effect, Komrad and the APA have opposed this practice because they are concerned that vulnerable psychiatric patients whose suffering might be treatable could instead receive aid in dying.

    It would undoubtedly be a bad thing if that worry came to fruition. Still, we’re concerned that the APA’s opposition to PAD for non-terminal psychiatric illness is too facile. We’ll argue that the central justifications for PAD in cases of terminal illness also apply to some cases where people suffer only from non-terminal psychiatric illness. Moreover, we argue that the APA’s reasons for excluding persons with non-terminal illness from PAD are not compelling.

    On the other hand, we are also sensitive to the APA’s concerns about PAD and euthanasia, and agree that many persons with psychiatric illness who suffer from suicidal ideation should not have access to PAD. Furthermore, we regard psychiatric practices like involuntary civil commitment and involuntary medication to prevent suicide as generally justifiable even though they are, as we will argue, deeply at odds with the rationale for PAD for non-terminal, psychiatric illness.

    The result, we think, is a serious dilemma: how do we reconcile the idea that medicine should be empowered to prevent persons from attempting suicide with the idea that severe and intractable suffering, even when it is due to a non-terminal illness, can make death seem a reasonable option?

    There are 3 short background readings: (contact linda.carrlee@hsc.utah.edu for copies)

    •  http://www.psychiatrictimes.com/suicide/apa-position-medical-euthanasia
    • “Capacity Evaluations of Psychiatric Patients Requesting Assisted Death in the Netherlands” by S.N. Doernberg, et.al. (Psychosomatics2016:57:556–565)
    • “Psychiatric evaluations for individuals requesting assisted death in Washington and Oregon should not be mandatory” by Linda Ganzini, MD, MPH (General Hospital Psychiatry 36 (2014) 10–12

    "A Panel Discussion and viewing of documentary film: The State of Eugenics: The Story of Americans Sterilized Against Their Will"

    This Evening Ethics is presented in collaboration with UCEER (The University of Utah Center for Excellence in Ethical, Legal, and Social (ELSI) Issues in Genetic Research) and the Spencer S. Eccles Health Sciences Library (EHSL).

    From the 1930s to the 1970s, more than 7000 people were sterilized, often against their wishes and without their knowledge, by the state of North Carolina. While not the only state to use official government channels to promote procure “eugenic sterilizations” for people deemed unworthy of reproducing, North Carolina has one of the best documented histories of the practice and subsequent attempts at reparations. This 80-minute documentary film portrays the lives and struggles of the people and families wronged, and now seeking justice. There will be no background reading for this session, but it will be one-half hour longer than our typical Evening Ethics program in order to have adequate time for the panel-led discussion after we view the film.

     "Racism and Discrimination in Medicine -When the Physician is the 'Victim'"with J. Nwando Olayiwola, MD, MPH, FAAFP

    This Evening Ethics is presented in collaboration with the Office of Inclusion and Outreach and the Spencer S. Eccles Health Sciences Library.

     Nwando Olayiwola, MD, MPH, FAAFP J. Nwando  Olayiwola, MD, MPH, FAAFP

     In medicine, there is almost a sacred covenant between the physician and the patient, in which the physician, under oath to "do no harm," feels personally responsible to cater to the needs of their patients, sometimes at the risk of their own wellness. Additionally, there is a high level of trust that patients extend to their physicians, not always earned, and often assumed. However, even with this, physicians are increasingly learning in course of their training about the impact of their own biases on patient care and outcomes. Much of our medical education and training, rightfully, exposes resultant health and health care disparities by virtue of physicians’ overt or covert prejudices that influence their care and their often unilateral power in relationships. However, what if that sacred relationship is distorted by the patient's prejudices? What if the relationship dynamic is shifted and the patient is the owner of that power? In many cases, that's a good thing- we want patients to feel more empowered and activated in their own care. We want patient voices to be heard and respected. But, in the case that a physician is subject to discrimination, racism or sexism by a patient, have we prepared ourselves for how to respond? What should that preparation look like? In this session, Dr. Olayiwola will share her perspective on her article, “Racism in Medicine: Shifting the Power,” our background reading for this session, linked here, and facilitate a dialogue around "-isms" and "-schisms" in medicine, how to prepare physicians and other health care professionals for these realities, how to understand microaggressions, and how to regain power and self-confidence.

    Dr. Olayiwola is CEO & Founder, Inspire Health Solutions, LLC & Association of Minority Women Professionals,  Chief Clinical Transformation Officer, Rubicon MD,  Associate Clinical Professor, UCSF Department of Family & Community Medicine.

     

    "Pre-implantation Genetic Testing with IVF: Who Benefits?" with Erin Rothwell, PhD

    The past several years have shown a steady increase in the use of pre-implantation genetic testing for aneuploidy (PGT-A) in women undergoing in vitro fertilization (IVF). In this procedure, the embryos are not evaluated for specific genetic conditions such as sickle cell disease or cystic fibrosis, but for chromosomal aneuploidy, and presence of too many or too few chromosomes. The growing presence of this practice in reproductive medicine merits attention not only because there are no national recommendations for use of PGT-A, but also because it raises a host of ethical, legal and social concerns relevant to practitioners, expectant parents, and policy-makers.  Some of these include: the routinization of testing and informed consent, challenges relating to the scope and delivery of genetic counseling, especially given the prevalence of mosaic embryos; the widening of social and economic disparities; and an array of policy issues, such as provider liability, regulatory oversight, and impact on the advancement of disability rights.

     Background readings for this session: (contact linda.carrlee@hsc.utah.edu for copies)

     

     CANCELED: (to be rescheduled at a later date) "Does Medical Humanities Still Bridge Only 'Two Cultures?'" with Louis Borgenicht, MD, Susan Sample, PhD, MFA, and Gretchen Case, PhD

    In 1959 British novelist and scientist C.P. Snow gave a lecture which fomented much commentary and discussion over the years. In “The Two Cultures” he argued, "The intellectual life of the whole of Western society is increasingly being split into two polar groups…literary intellectuals at one pole--at the other scientists…between the two a gulf of mutual incomprehension.”

    In 1986, Louis Borgenicht, MD wrote an essay trying to assimilate these thoughts between the literary intellectuals (humanists) and scientists (physicians.) Is this cultural divide relevant to medicine in the 21st century? We will discuss his article, “Medicine Between Two Cultures, ” look at current critical responses to C.P. Snow’s paradigm in medical contexts, and explore a new cultural divide between medical humanities and health humanities. These distinctions affect how we educate healthcare providers and trainees and ultimately, the delivery of healthcare.

    Background Readings for this session: (Please contact Linda.carrlee@hsc.utah.edu  for copies of these articles.)

     “The $5000 Icepack: What is the Cost of Emergency Care?”with Tom Miller, MD, CMO UHealth, Scott Smith, JD, General Counsel U Health, and Gretchen Case, PhD, Chief, PMEH

    Billing for healthcare services is a puzzle to many people in the United States; finding out what care costs in the emergency room might be the most difficult puzzle of all.  Patients have reported exorbitantly expensive charges for emergency room services—even when those services were declined—while administrators point out the significant costs of maintaining medical teams ready for any situation that comes through the door.  What information do patients need to avoid unexpected bills in the ER?  How can individual providers advocate for patients and help them navigate a complex system?  How might hospitals and health systems respond to stories of billing practices that may dissuade people from seeking medical care in an emergency?  Two background readings for this session are found at:

    https://www.vox.com/2018/5/1/17261488/er-expensive-medical-bill

    https://khn.org/news/sticker-shock-jolts-oklahoma-patient-15076-for-four-tiny-screws/

    From the Evening Ethics discussion: Power Point on EMTALA by Scott Smith, JD, General Counsel UHealth.

    From the Evening Ethics discussion: Power Point by Tom Miller, MD, CMO UHealth.  

    Rescheduled: "Does Medical Humanities Still Bridge Only 'Two Cultures?'" with Louis Borgenicht, MD, Susan Sample, PhD, MFA, and Gretchen Case, PhD

    In 1959 British novelist and scientist C.P. Snow gave a lecture which fomented much commentary and discussion over the years. In “The Two Cultures” he argued, "The intellectual life of the whole of Western society is increasingly being split into two polar groups…literary intellectuals at one pole--at the other scientists…between the two a gulf of mutual incomprehension.”

    In 1986, Louis Borgenicht, MD wrote an essay trying to assimilate these thoughts between the literary intellectuals (humanists) and scientists (physicians.) Is this cultural divide relevant to medicine in the 21st century? We will discuss his article, “Medicine Between Two Cultures, ” look at current critical responses to C.P. Snow’s paradigm in medical contexts, and explore a new cultural divide between medical humanities and health humanities. These distinctions affect how we educate healthcare providers and trainees and ultimately, the delivery of healthcare.

    Background Readings for this session: (Please contact Linda.carrlee@hsc.utah.edu  for copies of these articles.)

    "When Patient Care Conflicts with the Values of a Religiously-Affiliated Hospital/University” 

    Facilitators: Lars Nielsen (Counseling and Psychological Services, Brigham Young University) and James Tabery (Department of Philosophy, University of Utah)

    Description: Therapists and counselors at religiously-affiliated universities and hospitals face a challenge when the personal care of their patients/students doesn't align with the values of the institution. How should a counselor at such a university advise a student who feels disillusioned about her faith? How should a therapist at such a hospital counsel a patient who requests services not supported by the institution for religious reasons?

    This Evening Ethics discussion will draw together practitioners from a variety of professional backgrounds and a variety of religiously-affiliated institutions to assess this pressing challenge with direct implications for patient/student populations.

    Links to background readings: (Or contact linda.carrlee@hsc.utah.edu for pdfs)

    “To See the Suffering: The Humanities Have What Medicine Needs,” A Viewing and Discussion of the 2018 Jefferson Lecture in the Humanities delivered by Rita Charon, MD, PhD and Celebration of the 5th issue of Rubor: Reflections on Medicine from The Wasatch Front

    We will live stream Dr. Charon’s 2018 Jefferson Lecture, “To See the Suffering: The Humanities Have What Medicine Needs” promptly at 5:30pm from the Warner Theatre in Washington D.C. After the lecture we will discuss how arts and humanities are integrated into medical education and professional practice at the University of Utah. We will also celebrate publication of the latest issue of Rubor, the arts and literary magazine founded by medical students at the U. The Jefferson Lecture in the Humanities is the highest honor the National Endowment for the Humanities (NEH) bestows for distinguished intellectual achievement in the humanities. This year’s honor goes to Dr. Rita Charon, a Harvard-trained physician and English literature scholar, and founding chair and professor of medical humanities and ethics and professor of medicine at the Columbia University Irving Medical Center. Dr. Charon is known for her theory of narrative medicine, which uses knowledge gleaned from the study of literature to understand the stories created and told in clinical settings. 

    “Hidden and not-so-hidden conflicts of interest: how much should we care?” facilitated by Jeffrey R. Botkin, MD, MPH

    Many faculty members have financial ties to companies that develop and market drugs and devices for use in medical care.  These financial relationships arise from speaking fees, service on advisory committees or corporate boards, patents, and equity interests in companies.  When a faculty member has a significant financial relationship to an external entity that is related to the faculty member’s research, disclosure of that relationship is required and the institution works with the faculty member to manage, reduce or eliminate any conflicts of interest.  This system is considered important to minimize bias in the conduct of research and to maintain trust in the system by which the safety and efficacy of drugs and devices is assessed.  But the system is not entirely effective due to inadequate disclosures, failures to follow management plans, weak management plans, and the lack of serious penalties for non-compliance.  Further, as the reading illustrates, new challenges are emerging in the form of post-hoc payments from regulated companies to physicians and scientists after they serve on advisory committees to the FDA.  This form of payment is entirely unregulated by the system.  In the discussion, we will review the key concepts relevant to our approach to conflicts of interest and the ways in which the system is succeeding and failing. Background article to read for this session is “Hidden Conflicts” by Charles Piller, (Science 2018 Jul 6;361(6397):16-20)  https://www.ncbi.nlm.nih.gov/pubmed/29976808

    "Silences and Last Words: Poetry as Witness at the End of Life" with Rafael Campo, MD, 2018-19 Medical Humanities Lecturer

    This event is a collaboration with The Program in Medical Ethics and Humanities in the Division of General Internal Medicine, Department of Internal Medicine, University of Utah School of Medicine, The Office of Health Equity, Cancer Health Equity, Center on Aging, School for Cultural and Social Transformation, the Tanner Humanities Center, and the Creative Writing Program.

    For a few short poetry selections from Dr. Campo, as background readings for this session, contact linda.carrlee@hsc.utah.edu

    Immediately after this session, the HSEB Bookstore will host a book sale of copies of Rafael Campo’s newest book, Comfort Measures Only: New and Selected Poems, 1994-2016, and Dr. Campo will sign his book for you.

    2017 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

    "Is Proxy-Witnessing an Ethical Way to Remember the Holocaust and Prevent Future Atrocities?"

    The death last July of Elie Wiesel, 87, a Holocaust survivor and winner of the Nobel Peace Prize, was a reminder that soon, there will be no eyewitnesses still living. How then do we heed what has been called humanity's "ethical imperative" to not forget so that the atrocities of the Holocaust will never reoccur in the future?

    Literature scholar Susan Gubar suggests in her book Poetry after Auschwitz: Remembering What One Never Knew (2003)the possibility of "proxy-witnessing." Writers who did not participate in the Holocaust "testify…for those who cannot testify for themselves" by exercising their moral imagination. Through poetry's images and words, emotion and intellect, readers are transported to a communal memory of the past and then returned to the present where they may ethically look to the future. Proxy-witnessing may be applicable to other artistic mediums as well. Photography in particular has been discussed in relation to memory and representation. So, too, has tourism to Holocaust memorials, museums, and monuments; visitors are "secondary witnesses" and "producers of collective memory, historical knowledge, and ethical reflection" (Reynolds 2016).

    Our discussion will begin with contributions from the University of Utah community. Jeff Botkin, M.D., M.P.H., associate vice president for research integrity and chief of the Division of Medical Ethics and Humanities, and Susan Folsom, a fourth-year medical student, both visited Auschwitz last summer with the program Fellowships at Auschwitz for the Study of Professional Ethics. We also will discuss the title poem, "Conversations with Survivors," from a collection by Jacqueline Osherow, Ph.D., U of U distinguished professor of English, whose writing is included in Gubar's book.

    Background Reading:

    Osherow, Jacqueline. Conversations with Survivors. Athens, GA: University of Georgia Press, 1994. (a selection from)

    Reed, Brian M. "Poetry after Auschwitz: Remembering What One Never Knew." Rev. of Poetry after Auschwitz: Remembering What One Never Knew, by Susan Gubar. MLQ (September 2006): 411-16.

    Additional optional readings:

    Reynolds, Daniel. "Consumers or witnesses? Holocaust tourists and the problem of authenticity." Journal of Consumer Culture, 16(2), 334-353.

    Gubar, Susan. Poetry after Auschwitz; Remembering What One Never Knew. Bloomington, IN: Indiana University Press, 2003.

    My patient has a DNAR order and needs an operation: What should I do?  with 2017 David Green Memorial Lecturer, Mary E. Fallat, MD

    Decisions to limit resuscitation efforts or to not attempt resuscitation on behalf of a child are carefully deliberated and thoughtfully made by family members and guardians with the understanding that they can be changed as needed. An opportunity for change arises if the child needs sedation, anesthesia, or surgery. This opportunity should not prompt an automatic discontinuation of the orders, but a required reconsideration of the choice to continue, discontinue, or amend the orders. These are not typically emergency situations and this should be a team effort such that the family has access to the full range of providers and support services needed to make a decision. This is a time when patient and family centered care should be at the forefront of the medical care provided to the family unit, particularly the patient who has a life limiting condition and wishes to die with dignity.

    Please join us to discuss these and other questions:

    1. What would be your approach if a child needed surgery and had a DNAR?
    2. What are the differences between goal and procedure directed orders and their effects on the decisions made by providers during a procedure?
    3. If a person with resuscitation limits dies in the operating room or in the PICU during a procedure, should the death be viewed as a sentinel event?

    Selected readings: (email linda.carrlee@hsc.utah.edu for copies)

    1. Fallat ME, Deshpande JK: Do-Not-Resuscitate Orders for Pediatric Patients Who Require Anesthesia and Surgery. Pediatrics. 114(6):1686-1692, 2004
    2. Walker RM. DNR in the OR: resuscitation as an operative risk. JAMA. 1991;266:2407-2412
    3. Redmann AJBrasel KJAlexander CGSchwarze ML. Use of advance directives for high-risk operations: a national survey of surgeons. Ann Surg. 2012 Mar;255(3):418-23 doi: 10.1097/SLA.0b013e31823b6782  

     "Whose Story to Tell? The Ethics of Physicians Writing Their Experience" with 2017 Cowan Memorial Lecturer, Jay Barch, MD

    How should physician/writers negotiate their dual and dueling obligations when writing about the medical experience, that is, honoring their obligations to put patients first and to protect their privacy and confidentiality, while honoring the writer's duty to his or her creative work and, ultimately, to the reader. Background Reading for this session: http://www.medpagetoday.com/publichealthpolicy/ethics/50943

    A Special Evening Ethics Collaboration with The Association for Utah Genetic Counselors: “White People”: A staged Reading and Panel Discussion on Race, Religion, and Disability

    The Association for Utah Genetic Counselors is hosting an education conference. The kickoff event is a staged reading by Salt Lake Acting Company of J.T. Rodger’s play, “White People”, followed by a panel and audience discussion reflecting on the themes of race, religion, and disability, facilitated by Dr. Gretchen Case. The Division of Medical Ethics and Humanities is co-hosting this Friday evening event and invites you to join this Evening Ethics Discussion.

    What is cultural humility? How do health care professionals handle offensive comments related to race or religion? How should they? And what role do their colleagues have? How do we separate the professional and the personal?

    Please RSVP to linda.carrlee@hsc.utah.edu if you are interested by March 31, 2017 since space is limited. There will be a separate sign-in sheet at the registration table for friends of the DMEH. Registration begins at 6pm and the staged reading of “White People” begins promptly at 6:30pm. Panel begins at 7:15pm.

    ***********************

    If you are interested in more information about the AUG conference, go to https://www.utahgc.org/events/2017-education-conference.

    A GENETICS HOT TOPICS: Genetic Testing and Disability: Is Genetic Testing Discriminatory?

    Prospective parents with heritable disabilities may encounter many ethical questions about their roles and responsibilities as prospective parents.  Sometimes, these questions are framed as questions about whether it is ethically permissible to select for disability, as in discussions about parents who are Deaf choosing to try to select for children who are Deaf.  Sometimes, the questions are framed as whether it is permissible to select against disability; Adrienne Asch, for example, was generally committed to procreative liberty but criticized abortion specifically for disability as discriminatory.  Another set of questions challenges people with disabilities as parents: they may be faced with criticisms about their abilities as parents and about themselves as procreators.  They may also be urged to consider pre- or post-implantation genetic testing to try to avoid passing on their conditions to offspring.  These kinds of questions may be posed by family and friends, implicitly or explicitly in public policy, or even in encounters with health care professionals.  How should we answer these and related questions?  Are they discriminatory, or otherwise ethically problematic, and why?  Join us for a discussion facilitated by Visiting Scholar Adam Cureton and Leslie Francis.  Adam is Assistant Professor of Philosophy at the University of Tennessee.  Prior to that, he did his Ph.D. in Philosophy at UNC Chapel Hill and received a B.Phil. in Philosophy from Oxford University, where he studied as a Rhodes Scholar.  His interests are mainly in ethical theory, the history of ethics, political philosophy and metaethics.  He writes widely on issues of disability and is founder and president of the Society for Philosophy and Disability. Adam has a visual disability and is the parent of two young children.

    Background Readings: 

    Adam Cureton, Some advantages to having a parent with a disability.  Journal of Medical Ethics 42, 1. 

    Sheila Black, Passing My Disability on to my Children.  The New York Times  (Sept. 7, 2016).

     

    “Are U.S. physicians complicit in unethical organ harvesting when they provide surgical education to international transplant physicians?”

    Although organ trafficking and transplant tourism have raised ethical questions for many years, recent events have heightened concerns. In February 2017, the British Medical Journal retracted an article about a Chinese liver transplantation study after the authors "failed to persuade editors that 564 livers grafted in the course of the research were not taken from executed prisoners." An Australian researcher had alerted BMJ editors of the "statistical improbability" that so many livers could have been freely donated. The Vatican also held a Pontifical Academy of Science Summit on Organ Trafficking and Transplant Tourism in February. The international group Doctors Against Forced Organ Harvesting (DAFOH) reported that in China "anywhere between 100,000 and 1 million prisoners of conscience have been killed for their organs in the past 17 years." A majority of the prisoners are practitioners of Falun Gong, a spiritual practice that the Communist Party illegally banned in 1999 and continues to persecute heavily. However, other minority populations are also targets of alleged organ trafficking, including Uyghurs, Tibetans, and House Christians. Despite the Chinese Communist Party attempting to say the practice has stopped, there is no evidence to support this claim.

    Leading our Evening Ethics Discussion will be Glynn Weldon Gilcrease, M.D., U of U assistant professor of oncology, who serves as deputy director of DAFOH. He has worked closely with David Matas, a Canadian lawyer specializing in refuge law and co-author with David Kilgour of Bloody Harvest: The Killing of Falun Gong for Their Organs (2009), which has been made into a documentary. Questions we'll discuss include:

    • What are the ethical ramifications of organ trafficking and transplant tourism for U.S. physicians?
    • Are health-care professionals obligated to care for patients who receive an organ transplant in a country that is suspected of illicit organ trafficking?
    • Should U.S. surgeons adopt prohibitions similar to Australia and Taiwan, which do not provide surgical education to Chinese physicians?

    Background readings**:

    Sharif A etal. Organ Procurement From Executed Prisoners in China,” Am Journal Transplant 2014; XX: 1-7.

    Matas, David. “Ethical standards and Chinese organ transplant abuse,” (Revised remarks for a presentation to the Department of Bioethics and Medical Humanism, College of Medicine, University of Arizona, 15 April, 2016)

    **Contact linda.carrlee@hsc.utah.edu for copies of these articles

     

    “Physician Assisted Suicide: Can we minimize its potential harms in the USA?” with Stuart Youngner, MD

    Physician-assisted death (PAD) is now legal for about 20% of Americans. However, there has been little planning and preparation about how to minimize its potential harms to patients and physicians. What would an ideal process of continued quality improvement (CG!) look like for PAD? Please join us for an Evening Ethics discussion led by Stuart Youngner, MD, to address the following:

    • Who should lead such efforts?
    • Who should fund CQI and the research to support it?
    • What should the role of organized medicine be?
    • Do other countries have anything to teach us?
    • The difficulty of defining and measuring false positives and negatives in evaluating and modifying public policy. For example, how many cases are enough, too many, just right?

    Stuart J. Youngner received a B.A. from Swarthmore College and an M.D. from Case Western Reserve University, where he is currently Professor of Bioethics. He did an internship in Pediatrics and a residency in Psychiatry at University Hospitals of Cleveland and subsequently received a fellowship from the National Endowment for the Humanities to study medical ethics at the Kennedy Institute of Ethics at Georgetown University. Dr. Youngner serves on the editorial advisory boards of the Journal of Medicine and Philosophy, the Kennedy Institute of Ethics Journal, and the Journal of Law, Medicine, and Ethics.

    Background reading for this session is

    Frye, John and Youngner, Stuart J. "A Call for a Patient-Centered Response to Legalized Assisted Dying," Annals of Internal Medicine, Vol. 165, No. 10, November 2016

    This article can be found at http://web.a.ebscohost.com.ezproxy.lib.utah.edu/ehost/pdfviewer/pdfviewer?vid=1&sid=8c19ca20-6f02-48e3-acf6-844e2bfbcbbd%40sessionmgr4009&hid=4206

    or through contacting linda.carrlee@hsc.utah.edu.

    “Is an ethically-appropriate cost (or price) possible for a pharmaceutical?” with Jim Ruble, PharmD, JD

     Pharmaceutical drugs are frequently identified as having the fastest increasing prices in the US economy. Health care is a top expenditure in the US economy, representing approximately 25% of the US Federal Budget. Recent high-profile events have flared public dialogue regarding the ethics of drug/pharmaceutical pricing. A non-exhaustive list of events include, Epi-Pen price increases by Mylan, Turin Pharmaceuticals marketing of pyrimethamine (Daraprim), pricing of Hepatitis therapies - ledipasvir/sofosbuvir (Harvoni), deflazacort (Emflaza), and the escalating costs affiliated with oncology related and specialty pharmaceuticals.

    There are many perspectives about the “fairness” of these pricing decisions. Many elements may contribute to policy frameworks, including intellectual property protection, research and development, regulatory licensing, marketing, supply chain disruptions, human need, and principles of resource allocation. Accordingly, this is a critical time for all stakeholders to be better informed about the equipoise – interface of science, economics, and ethics - in pharmaceutical pricing public policy.

    Some of the content to be considered at this Evening Ethics:

    • Historical examples and global variability of pharmaceutical pricing
    • Intellectual property legal paradigms and duality of pharmaceuticals – health care commodity and tool for profit
    • Should pharmaceuticals follow the same economic rules as other commodities?

    Background Reading: (contact linda.carrlee@hsc.utah.edu for copies)

    Parker-Lue S, Santoro M, Koski G. The ethics and economics of pharmaceutical pricing. Annu Rev Pharmacol Toxicol. 2015;55:191-206. doi: 10.1146/annurev-pharmtox-010814-124649. Epub 2014 Aug 13.

    Additional optional Reading:Gusmano MK, Arno PS. Bioethics Forum Essay: The Challenge of High Drug Prices in the US. The Hastings Center, Published: October 5, 2016. 

    Evening Ethics Discussion and screening of documentary film, "Dying in Vein"

    This latest film from Salt Lake City-based filmmaker Jenny Mackenzie is an intimate and deeply personal exploration of the opiate and heroin addiction crisis. The film follows two young women trying to get clean, a 22-year-old in recovery, a family grieving the loss of their son, and a team of ER doctors trying to save their patients. Through these four stories, the film explores the pill to heroin pipeline and the shame and blame that surround the disease of addiction. The film looks at the aftermath of the death of loved ones, the daily commitment to sobriety, the reality of considering treatment after multiple relapses, and the culpability of our medical communities in this crisis. A discussion of the ethics will follow the film.

    Discussion Moderators:

    Gretchen A. Case, PhD, Associate Professor, Division of Medical Ethics and Humanities Department of Internal Medicine, School of Medicine

    Ana Maria Lopez, MD, MPH, FACP, Associate Vice President for Health Equity and Inclusion, University of Utah Health, Associate Director, Collaboration and Engagement, Utah Center for Clinical and Translational Science, Director of Cancer Health Equity, Huntsman Cancer Institute, Professor of Medicine, University of Utah School of Medicine, and President-Elect, American College of Physicians

    **Please note that this is 30 minutes longer than our usual Evening Ethics as we will be showing the film as well as discussing it. (There is no back-ground reading preparation.)

    This is a collaborative Evening Ethics with the Spencer S. Eccles Health Sciences Library, the Office of Health Equity and Inclusion, and the Division of Medical Ethics and Humanities 

    “Targeted Regulation of Abortion Providers (TRAP): ethical issues”

    Targeted Regulation of Abortion Providers, or TRAP laws, have been proliferating in many states. These laws impose special requirements on abortion providers: requirements of informed consent, equipment, inspections, fetal protection, and even procedures. In 2016, the U.S. Supreme Court held in Whole Women’s Health v. Hellerstedt that TRAP laws are unconstitutional if they impose unreasonable burdens on women’s health without offsetting benefits supported by evidence. Please join us for an Evening Ethics discussion that will include such questions as: How do these TRAP laws implicate professional standards of care? How do these TRAP laws implicate the profession's ethical obligations (such as to "do no harm" and promote patient autonomy?) Who speaks for the profession on these issues? What if members of the profession disagree? How does a physician separate out their personal/philosophical views from those of the profession?

    Background reading for this session is Michele Goodwin’s “Whole Woman’s Health v. Hellerstedt: The Empirical Case Against Trap Laws.” (Medical Law Review, Vol. 25, No. 2, pp. 340–351). Contact linda.carrlee@hsc.utah.edu for copies.

    ***************************

    For those interested in this topic in more detail, a symposium sponsored by the University of Utah S.J. Quinney College of Law Center for Law & Biomedical Sciences on the “Medical and Legal Aspects of Targeted Regulation of Abortion Providers (TRAP) Laws,” will be held on December 1 @ 8:30 am - 4:00 pm at the S.J. Quinney College of Law. For more information and registration for that symposium, see http://www.law.utah.edu/event/medical-and-legal-aspects-of-targeted-regulation-of-abortion-providers-trap-laws/ 

     

    “Professional Conscripts: Rethinking Conscience in Medicine”with 2017-18 Cowan Memorial Lecturer, Abraham M. Nussbaum, MD

    Recently, the question of conscientious objection was prominently raised in an NEJM article by Ronit Y. Stahl, Ph.D., and Ezekiel J. Emanuel, M.D., Ph.D. Using this article, “ Physicians, Not Conscripts—Conscientious Objection in Health Care” (NEJM, 2017 Apr 6;376(14):1380-1385) to frame our conversation, we will consider the similarities and differences between conscientious objection in the military and in medicine; ask if it should be legal for a health practitioner to opt out of performing specific procedures because of his or her moral or religious beliefs; if and when a practitioner should not participate in a particular practice endorsed by a professional society; consider if professional societies constitute a moral authority; explore the difference between individual and communal conscience; and think through other ways to honor pluralism within contemporary health professions. (Contact Linda.carrlee@hsc.utah.edu for a copy of this article.)

    Abraham M. Nussbaum, MD,MTS, our 2017-18 Cowan Memorial Speaker, will facilitate this discussion. Dr. Nussbaum is an Associate Professor, Dept. of Psychiatry, University of Colorado School of Medicine, and a board certified psychiatrist who practices at Denver Health, an academic safety-net hospital in downtown Denver.

    He previously directed its adult inpatient psychiatry units, which care for adults throughout Colorado experiencing mental health crises and currently serves as Chief Education Officer, providing strategic vision, daily direction, and administrative oversight for Denver Health’s clinical education programs. In his practice, he strives to inhabit the roles described in his book, The Finest Traditions of My Calling: One Physician’s Search for the Renewal of Medicine, asking how he and his fellow practitioners can restore patients to health through person-centered care. Dr. Nussbaum is actively involved in teaching undergraduate students, medical students, psychiatry residents, and psychosomatic fellows.

    “Genetics Hot Topics: Gene Drive: Scientists Can Now Use Genetics to Alter Ecosystems. Should They?"

    Current gene-editing technologies (like CRISPR-Cas9) now have the potential to alter populations, species, and even entire ecosystems. A genetic alteration inserted into a small population of organisms released into the wild would allow for that altered genetic variant to spread through an entire population as those original organisms reproduce and pass on the variant. Scientists have proposed using the technology--called "gene drive"--to alter organisms and the environment. For example, a gene drive involving mosquitoes could limit the insects' ability to transmit deadly diseases like malaria, dengue, and Zika. Gene drives have also been proposed to fight invasive species that decimate island ecosystems. The gene drive technology, however, will itself alter the ecosystems. How should this technology be regulated? Can it be safely researched? Are there ways to anticipate the long term impact of altering whole populations? Might the technology be weaponized and, if so, how can that be prevented? This Genetics Hot Topics will be devoted to assessing who should be in the driver' seat when it comes to gene drive.

    Background readings for this session:

    Mechanic, Michael. Mother Jones, “This Technology Could Stop The World’s Deadliest Animal.” Aug 14, 2017

    Pugh, Jonathan. Practical Ethics, “The Ethics of Genetically Modified Mosquitoes and Gene-Drive Technology,” University of Oxford. Dec. 2, 2015. (blog post)

    Optional:

    The National Academies of Sciences Consensus Study Report : Gene Drives on the Horizon: Advancing Science, Navigating Uncertainty, and Aligning Research with Public Values (2016)

    2016 DISCUSSIONS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

    "What Could Go Wrong?--Video Games and Health Care Interventions"

    Why might game technology be appropriate to deliver Health Care interventions? What are some ethical considerations for using game technology in Health Care interventions? How might Video Games be used to make moral demands of players, to encourage players to reflect on their values, and to support patients in value-laden Health Care situations? How can gaming promote value clarification about different genetic testing options?

    Please join us for what is sure to be a lively discussion co-facilitated by Erin Rothwell, PhD, and  Jose Zagal. Ethical Reasoning and Reflection as Supported by Single-Player Video Games by Jose Zagal is recommended as background reading for this session.   Please contact Linda Carr-Lee Faix at linda.carrlee@hsc.utah.edu for a copy of this article. 

     "The ethics of Video Remote Sign Language Interpreter Use in Medical Settings," with Theresa Blankmeyer Burke, PhD

    The impact of the Americans with Disabilities Act on the provision of American Sign Language interpreters in medical settings, plus the national shortage of qualified signed language interpreters has resulted in the increase of video remote interpreting in health care settings. Last summer, a well-publicized case of Margaret Weiss, a pregnant deaf woman seeking to have a live interpreter on site during the birth of her child was denied, with the court upholding the hospital's decision to use video remote interpreting for the birth. This Evening Ethics session will look at the ethical considerations involved in video remote interpreting in health care settings: Should health care always be interpreted by on-site signed language interpreters? Are signed language interpreters fungible? What ethical issues should health care providers be aware of when using signed language interpreters? What ethical issues come into play in medical settings with deaf or hard of hearing individuals who do not use a signed language? To focus our conversation, we will look at the case of Margaret Weiss, using the following documents as a guide:

     National Association of the Deaf Position Statement on Video Remote Interpreting in Hospitals

    http://nad.org/issues/technology/vri/position-statement-hospitals

     News media reports of the case of Margaret Weiss (this has additional links at the bottom)

    http://allnurses.com/ob-gyn-nursing/deaf-and-pregnant-999579.html

     ADA Statement on Effective Communication

    http://www.ada.gov/effective-comm.htm

     Teresa Blankmeyer Burke, Ph.D. is an Associate Professor of Philosophy at Gallaudet University. Her research focuses on the intersection between bioethics, disability, and the deaf community. She is currently a Visiting Scholar in the University of New Mexico's Signed Language Interpreting Program, where she is writing a monograph on ethics and signed language interpreting. She also serves as bioethics advisor to the World Federation of the Deaf, and the National Association of the Deaf (U.S.A.)

    Genetics Hot Topics: “Cancer Moonshot, Precision Medicine Initiative, 21st Century Cures...: What's data got to do with it?” with Bob Cook-Deegan, MD

    Robert Cook-Deegan is a research professor at Duke University in the Sanford School of Public Policy, with secondary appointments in Internal Medicine (School of Medicine), and Biology (Trinity College of Arts & Sciences). He was the founding director for Genome Ethics, Law & Policy in Duke’s Institute for Genome Sciences & Policy from July 2002 through December 2012. He is the author of The Gene Wars: Science, Politics, and the Human Genome and an author on over 250 articles. Dr. Cook-Deegan’s areas of expertise include genomics and intellectual property, history of genomics, global health, science and health policy, and health research policy. His current research focuses on policy implications of genomics, bioethics, intellectual property, and innovation.
    This Genetics Hot Topics, collaboratively presented with UCEER,  will explore “the squabbles in building a medical information commons: who owns the data? Who has obligations to share with whom.” Background reading materials can be found on the UCEER website including: https://www.whitehouse.gov/the-press-office/2015/01/30/fact-sheet-president-obama-s-precision-medicine-initiative

    “Using data to stigmatize: What are our collective responsibilities?” with Wylie Burke, MD, PhD, 2016 Max and Sara Cowan Memorial Speaker

    A person’s genome has been described as an “instruction manual” that can tell each of us about the health risks we face so that our medical care can be individualized. The concept is appealing – and makes intuitive sense because we all observe individual differences in health that are not readily explained. But more than a decade after completion of the Human  Genome Project, we see that the reality is more complex and perhaps more prosaic. As background reading for this  discussion, please read “Can research on the genetics of intelligence be ‘socially neutral’” by D. Roberts. (Hastings Cent Rep 2015; 45 (No.5):S52-54.) For an example of questionable data interpretation, you may also like to read “A review of intelligence GWAS hits: Their relationship to country IQ and the issue of special autocorrelation,” by D. Piffer. (Intelligence 2015;53: 43-50.) For copies of both articles, please contact Linda Carr-Lee Faix at linda.carrlee@hsc.utah.edu

    “Against Informed Consent? The case for paternalism in genomic newborn screening,” with Jeff Brosco, MD, PhD, 2016 David Green Memorial Speaker

    State newborn screening programs are among the most successful public health initiatives of the last 100 years. Thousands of lives have been saved, and tens of thousands have avoided significant morbidity because of early detection and treatment. The universal approach of these public health programs has led to reductions in health disparities among underserved populations. Whole genome (and exome) sequencing brings both the promise of expanding screening and the peril of dismantling the public health structure of newborn screening programs. This session begins with a brief  history of newborn screening and leads to a discussion of the ethical and policy dilemmas faced by clinicians, researchers, and the broader public. As choices for genetic testing in the newborn period proliferate, what are the best ways to respect autonomy, safeguard infant lives, and optimize family and child well-being? Please read the AAP guidelines on genetic testing in children for this session: Ethical and Policy Issues in Genetic Testing and Screening of Children.

    “Virtue Ethics and Decisions to Limit Potentially Life-Sustaining Therapies," with Larry Cripe, MD

    Decisions to limit life-prolonging treatment (DLT), a type of shared decision making, requires that patients tell physicians their preferences for end-of-life care and that patients be told when physicians have decided to limit treatment. In a recent study (Winkler et al., 2009) nearly 75% of terminally ill cancer patients told doctors their intubation, ICU transfer, and chemotherapy preferences, but only 47% of those patients were notified of their physicians' decisions—notably, those who agreed with doctors to opt for palliative care. When patients wanted life-prolonging treatment, communication between patients and physicians was "impaired." Larry Cripe, Associate Professor of Medicine, Division of Hematology and Oncology, Indiana University School of Medicine and founding co-director of Simon Cancer Center’s Palliative Care Research and Education Program, suggests that we look carefully at the emphasis medicine places on truthfulness. Dr. Cripe suggests that although terminally ill patients want "medical experts" to tell them truthfully about prognoses and treatment plans, they do not necessarily want to share in decision making, but rather, want trusted physicians to be with them as they seek "a shared meaning of hope" grounded in compassion. 

    Please join us to discuss these and other questions: Are we witnessing with DLT (decisions to limit life-prolonging treatment) a change of paradigm in end-of-life care, a return to a paternalistic doctor-patient relationship? What are the ethical ramifications of DLT? What role might narrative play in training physicians how to better communicate about end-of-life? Could narrative help ensure that DLT is a fair and just process for all patients? 

    Please read two, short articles to prepare for this discussion: Winkler, EC et al. Patient involvement in decisions to limit treatment: The crucial role of agreement between physician and patient." (J of Clinical Oncology 27: 2225-2230, 2009) and Cripe, LD. Trustworthiness. (J of Clinical Oncology 29: 3483-3486, 2011.)

    "Opiates for the Masses?  Ethical Challenges in Opioid Prescribing and the Management of Chronic Pain"

    The United States currently faces an epidemic of opioid dependence and prescription drug overdose, fueled by increased prescribing of opioids by health care professionals for chronic pain management. Guidelines for the management of chronic pain recently published by the Centers for Disease Control are designed to address this public health emergency.  However, these guidelines may seem to inadequately respect the importance of aggressively treating patients’ pain, and do not address all of the challenges faced by clinicians in negotiating pain management strategies with their patients.  In this session we will briefly review data about the growing epidemic of opioid dependence and prescription drug overdose, the aforementioned CDC guidelines, ethical considerations about pain management with and without opioids, and physician responsibility in follow-up care. These considerations, we hope, should provide a foundation for a discussion of physicians’ obligations regarding opioid prescribing, prescription monitoring, and pain management in complex clinical cases. DMEH members Peggy Battin, MFA, PhD, and Brent Kious, MD, PhD, will facilitate.

    As background reading for this discussion, see “Sometimes Pain is a Puzzle that Can’t be Solved” (NY Times, April 11, 2016), “Zero Pain is Not the Goal” (JAMA, March 15, 2016), and “Recognizing Pain Management as a Human Right: A First Step” (July, Anesthesia and Analgesia, 2007).  Please contact Linda Carr-Lee Faix at linda.carrlee@hsc.utah.edu if you have any difficulty accessing these articles.

    "Perverse Incentives in Care: Exploring the ways Medicare reimbursement creates injustice or maleficence"

    In “Denying Death,” (57 Ariz. L. Rev. 977 (2015), Teneille Brown, JD, argues that " Terminal cancer patients are being kept in the dark about the purpose of their care. Patients undergo expensive and painful interventions because they are holding out hope for a cure, even when their physicians know that a cure is very unlikely. The current Medicare reimbursement system encourages this false hope by incentivizing physicians to medicate and operate on patients, rather than to talk about whether or why to do these things. Our culture also encourages this false hope by treating cancer as a war that must be won. Whatever their wishes for their death, a substantial number of patients are not given a chance to articulate them, because nobody asks. This situation is a disaster on many levels.” Professor Brown explores the reasons for this complex phenomenon — medical, psychological, and legal— and concludes her article with ten legal mechanisms that could be used to cut against this current state of affairs, some of them already being proposed by CMS. Evening Ethics Discussion will seek provide background on these problems and seek your thoughtful feedback on these and other possible solutions to this problem. For background preparation, in addition to Professor Brown’s article, we provide an optional reading, "How Medicare’s Payment Cuts For Cancer Chemotherapy Drugs Changed Patterns Of Treatment" by Mireille Jacobson, et.al. (Health Affairs 29, No. 7 (2010): 1394–1402 )

    "Melancholia Revisited: Humoral Psychology in Shakespeare’s Plays," with Mark Matheson, D.Phil In collaboration with the Eccles Health Sciences Library

    How do we understand human character? Do we still think of individuals as representative of a “type”? What are our explanations for mental illness? How do our answers to these questions affect our human relationships and professional practice? This ethics discussion will coincide with a National Library of Medicine exhibit at the Eccles Health Sciences Library called “’And There’s the Humor of It’: Shakespeare and the Four  Humors.” It’s curated by Joan Gregory, and it will be available for us to visit. Shakespeare and his Renaissance contemporaries inherited humoral psychology from the classical period, and it served asn explanatory system for human character and conduct. The residues of this system remain in our language today, as when we speak of a certain person as “melancholy,” “sanguine,” or “phlegmatic.” Shakespeare also had other means of understanding individual character and mental illness, and we’ll discuss some of these at our gathering. Mark Matheson, D. Phil, writes, “I look forward to hearing your evaluations of humoral psychology from the perspective of modern medicine—and your thoughts on whether some of the assumptions underlying this system (though not the system itself) remain active today.” (There is no background reading for this session.)

    For a description of the exhibit, see https://www.nlm.nih.gov/hmd/about/exhibition/travelingexhibitions/pdf/humorsprinfo.pdf

    “Gallows Humor: Laughing When It’s Not Funny (Or Is It)?” 

    Facilitated by Gretchen Case, PhD and Phil Baese, MD

    Why would anyone find the gallows funny? This brand of humor—joking in the face of death, danger, fear, hopelessness—is common in medical settings. During this Evening Ethics, we will discuss why we laugh at un-funny moments, reflect on how and when such joking is appropriate, and think through some of our own experiences with gallows humor in medicine along with recent examples that have garnered widespread attention. Background reading for this session is “Gallows Humor in Medicine” by Katie Watson. (Hastings Center Report, 41, No. 5, (2011), p 37-45)

    "What Do You Do When You are Being Recorded?"

    With today’s cell phones, the ability to record is ubiquitous. Whether deliberately or accidentally, patients have begun recording their encounters with medical care. In at least one case, the result has been litigation when the recording revealed quite insulting comments about the patient. What if your patients want to record you? What if you suspect that your patients are recording you but haven’t asked your permission? Does patient recording violate your privacy? The privacy of others who might be present? What other ethical issues does recording raise? How should health care providers think about this new technology and its potential impact on their relationships with their patients? Please join us for discussion of these issues. Two background readings to prepare for this discussion are: “ Why Doctors Should Audio Record Patient Encounters, “ by Craig Klugman and “Ethical Implications of Patients and Families Secretly Recording Conversations With Physicians,” by M. Rodriguez et.al.

    GENETICS HOT TOPICS: "Ethical Issues in Gene Editing"

    An exciting and powerful new technology termed CRISPR-Cas9 provides a range of opportunities for biomedical science and for the treatment of genetic conditions. But this tool also presents a number of serious ethical concerns in a number of different domains. CRISPR-Cas9 enables gene editing in whole tissues, reproductive cells, stem cells, and embryos. Accordingly, the makeup of whole organisms can be altered to add or subtract genes to study the effects of those genes, but also to custom design microorganisms, plants, animals, and even human embryos to serve various human projects. In conjunction with tools such as “gene drives,” CRISPR-Cas9 could be used to alter or eliminate whole species from local or global environments, such as, for example, the elimination of mosquitoes for the purpose of preventing the burdens of mosquito-born diseases. 

    In this Genetics Hot Topics discussion, a panel will provide a brief overview of this technology, the prospects for its various uses, and the key ethical issues they raise. We will then foster discussion of several questions: 

    • What are the ethical concerns with gene editing in humans and human embryos? 
    • What are the opportunities and fears with the genetic manipulation of microorganisms, plants and animals and their release into the environment? 
    • What should scientists, ethicists, policy makers, and concerned citizens do to address these ethical concerns? 

    Panel members include: 

    • Dana Carroll, PhD, Professor of Biochemistry 
    • David Grunwald, PhD, Professor of Human Genetics 
    • Jeffrey Botkin, MD, MPH, Professor of Pediatrics 

    Readings for this session: 

    (email Linda.carrlee@hsc.utah.edu for full version)

    “Informed Consent: The Importance of the Havasupai Indian Tribal Case”

    The play, “Informed Consent,” by Deborah Zoe Laufer, which will be read on November 18th, 7:30pm at the University of Utah College of Law, is a fictionalized version of the Havasupai Indian Tribal Case that has been widely discussed in the field of research ethics and regulation. The case involved academic researchers who acquired information and blood samples from tribal members for research on diabetes.  However, the specimens were used by other investigators for sensitive studies including mental health research and for projects that assessed the ancient historical migration patterns of the tribe.  Both of the secondary research uses were conducted without the specific consent of tribal members.  This Evening Ethics, in anticipation of the play later in the week, will invite discussion of the controversial aspects of this case and the current status of regulations governing genetic research with biospecimens.  Moderators of the session will be two medical students, Lily Boettcher and Anna Cassell, and Dr. Jeffrey Botkin.

    2015 READINGS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

    "Genetics Hot Topics: Population-Base Screening for BRCA1 and BRCA2--Is it time to screen everyone?"

    Dr. Mary-Claire King was honored with the Lasker Koshland Special Achievement Award Medical Science for her contributions to medical science and society, exemplified by her contributions to the discovery of the BRCA1 mutation.  BRCA1 and BRCA2 mutations cause a substantial increase in risk for  breast and ovarian cancer in women. In a recent article in JAMA, she advocates for population-based genetic screening of women for BRCA1 and BRCA2 mutations and suggests that such screening should be a routine part of clinical practice.

    This “Genetics Hot Topics” will explore the benefits and risks of BRCA1/2 screening as part of routine healthcare for women.  This informal discussion will be facilitated by Jeffrey Botkin MD, MPH, Medical Ethics and Humanities Division Chief.  Background reading for this session is  “Population-Based Screening for BRCA1 and BRCA2: 2014 Lasker Award (JAMA 9/17/2014)."  Please join us!

    "Fixed-The Science/Fiction of Human Enhancement": What Does it Mean to Enhance your Body?

    As its title suggests, this new documentary addresses human capabilities, disabilities and the idea of being “fixed.”  The filmmakers follow the stories of a wide range of people whose bodies have been fixed-- or not fixed—by prosthetics, surgery, and other enhancements.  Prominent scholars from disability studies, medical engineering, robotics, transhumanism, and many other fields that question the limits and capacities of the human body offer their perspectives.   Come to watch this striking film and discuss such questions as:  Where does the body begin and end?  What is permissible enhancement of the human body?  What might be the social effects of widely available and/or encouraged “fixes”? 

    "Intimacies of Illness: The Ethics of Self-Disclosure" with Kimberly Myers, PhD

    Kimberly Myers, Ph.D., associate professor of Humanities and English at Penn State Hershey College of Medicine, and member at the Doctors Kienle Center for Humanistic Medicine, will facilitate a special Evening Ethics Discussion in conjunction with her visit to the University of Utah for the opening of the traveling art exhibit,"Edges of Light: Images of Breast Transformation. This exhibit includes photographs by Wendy Palmer and verbal reflections by Kimberly Myers and will be shown at the Eccles Health Science Library April 13-May 15.

     People often feel compelled to talk about their illness experiences.  Among the questions to be discussed include, why do we feel the need to do this?  What are some of the ethical issues involved with self-disclosure?  Should doctors ever tell patients about their own personal illnesses?  How might this affect the doctor-patient relationship?

     As background reading to prepare for this discussion, we ask that you read the short article in the New England Journal of Medicine, “Too Much Information—the Ethics of Self-Disclosure,” by Kelly A. Curran, M.D.  (July 3, 2014)

     In addition, Dr. Myers’ book, Illness in the Academy: A Collection of Pathographies by Academics ,(Purdue University Press, 2007) will be available for purchase and signing at this Evening Ethics.

    "Unilateral Physician DNAR Decisions in Pediatrics" with 2015 David Green Memorial Speaker, Mark Mercurio, MD, MA

    Decisions about resuscitation are usually made by physicians in consultation with patient, family members, and other staff. Are there ever situations where it is ethically permissible for a physician to make a decision not to attempt resuscitation, without consulting or reaching agreement with the patient or the patient's family?  If so, what would be the justification for bypassing patient autonomy--or in the case of a pediatric patient, parental authority?

    The discussion will begin with an article addressing the question in pediatrics, but easily extends to adult patients, and the principles utilized and the ethical and practical considerations are directly applicable to any patient.  Background reading for this session is an article by Mark Mercurio, MD, MA, Peter D. Murray, MD, and Ian Gross, MD, MA:  “Unilateral Pediatric “Do Not Attempt Resuscitation”Orders: The Pros, the Cons, and a Proposed Approach.” (Pediatrics, Volume 133, Supplement 1, February 2014)

    Dr. Mercurio, our 2015 David Green Memorial Speaker, is Director of the Program for Biomedical Ethics and the Yale Pediatric Ethics Program, Professor of Pediatrics at Yale University School of Medicine, and an attending neonatologist at Yale-New Haven Children’s Hospital. He will facilitate this Evening Ethics Discussion.

    In addition, Dr. Mercurio will present the David Green Memorial Lectureship at Pediatric Grand Rounds on Thursday, May 14, 2015, 8:00am-9:00 a.m., 3rd floor Primary Children’s Hospital: Ethical decision-making in the setting of extreme prematurity.” All are welcome.

    "The Ethics of Telemedicine"

    Members of the Center for Law and Biomedical Sciences at the College of Law met with the Telemedicine team at the University of Utah hospital, and realized that there are many overlapping ethical and legal topics that interest both groups. After a great conversation, the two groups decided to collaborate in the future, whenever possible. To that end, the Division of Medical Ethics and Humanities is hosting an Evening Ethics on the ethical issues surrounding the burgeoning field of Telemedicine.  This event will include members of the Telemedicine program at the U, and we invite you to join us.

    The Telemedicine service at the University of Utah, also known as "telehealth," is driven by patient demand. It is offered through eleven (and counting!) different medical services, such as cardiology, neurology, rehab, and transplant. The services supported include telephone consultations, emails between providers and patients, electronic medical records, digital radiology services, and pager and cell phone communications among others.

     Utah is in a unique and progressive position when it comes to the practice of telemedicine, as it is the first state to have passed the Interstate Medical Licensure Compact. This law is meant to streamline physician licensure across state lines and therefore facilitate the expansion of telemedicine practices. The development of different forms of telemedicine presents fascinating ethical questions. Among some of the questions that will be addressed at the Evening Ethics are: 1) How does telemedicine increases access to health care for our rural population in the Mountain West? 2) How does traditional telemedicine impact the relationship between physicians and patients, both negatively and positively? 3) What are the privacy and confidentiality concerns, and how can they be overcome? and 4) How should research be conducted using patient data from telemedicine conversations?

    This Evening Ethics Discussion will be facilitated by DMEH faculty member, Teneille Brown, and has no preparatory background reading. As always, the Evening Ethics conversation will be casual, and we invite and welcome people with diverse backgrounds and perspectives.

     "Intersex-The blurred lines of biological sex” with Jeanne Nollman

     What happens when a baby is born and doctors aren’t sure whether it is a boy or a girl? Join Jeanne Nollman, intersex educator/advocate/media personality to discuss Malta’s GENDER IDENTITY, GENDER EXPRESSION AND SEX CHARACTERISTICS ACT. This law is a landmark case that protects an intersex individuals primary right to self-determination, body integrity, and personal dignity. 

    The discussion will revolve around the new groundbreaking laws in the country of Malta for children born with Disorders of Sex Development (DSD). It will also include more general discussion of intersex issues. Among our questions for discussion: Can we raise a child without a gender? What impact will this have on the child, family and society? What problems may occur, and what problems might be solved? What would it look like in the U.S. if we had the same laws? 

    As background reading to prepare for this discussion, the following articles may be helpful: 

    https://aiclegal.files.WordPress.com/2012/10/interact_ms--‐updated.pdf 

    http://aiclegal.org/WordPress/wp--‐content/uploads/2012/10/wish--‐parents--‐FIN.pdf 

    Jeanne Nollman was a board member and past President for the largest intersex support group in the world, AIS-DSD (Androgen Insensitivity Syndrome-Disorders of Sex Development) for 7 years. She has spent the last 10 years educating doctors, lawyers, therapists, social workers, the criminal justice system, and students on what intersex is and how people with DSD are impacted physically and psychologically.

    THIS EVENING ETHICS HAS BEEN CANCELED: "The ethics of Video Remote Sign Language Interpreter Use in Medical Settings," with Theresa Blankmeyer Burke, PhD

    The impact of the Americans with Disabilities Act on the provision of American Sign Language interpreters in medical settings, plus the national shortage of qualified signed language interpreters has resulted in the increase of video remote interpreting in health care settings. Last summer, a well-publicized case of Margaret Weiss, a pregnant deaf woman seeking to have a live interpreter on site during the birth of her child was denied, with the court upholding the hospital's decision to use video remote interpreting for the birth. This Evening Ethics session will look at the ethical considerations involved in video remote interpreting in health care settings: Should health care always be interpreted by on-site signed language interpreters? Are signed language interpreters fungible? What ethical issues should health care providers be aware of when using signed language interpreters? What ethical issues come into play in medical settings with deaf or hard of hearing individuals who do not use a signed language? To focus our conversation, we will look at the case of Margaret Weiss, using the following documents as a guide:

     National Association of the Deaf Position Statement on Video Remote Interpreting in Hospitals

    http://nad.org/issues/technology/vri/position-statement-hospitals

     News media reports of the case of Margaret Weiss (this has additional links at the bottom)

    http://allnurses.com/ob-gyn-nursing/deaf-and-pregnant-999579.html

     ADA Statement on Effective Communication

    http://www.ada.gov/effective-comm.htm

     Teresa Blankmeyer Burke, Ph.D. is an Associate Professor of Philosophy at Gallaudet University. Her research focuses on the intersection between bioethics, disability, and the deaf community. She is currently a Visiting Scholar in the University of New Mexico's Signed Language Interpreting Program, where she is writing a monograph on ethics and signed language interpreting. She also serves as bioethics advisor to the World Federation of the Deaf, and the National Association of the Deaf (U.S.A.)

    "Death with Dignity Laws: What do they Mean for Physicians?" with Linda Ganzini, MD, MPH

    Anticipating a fuller presentation of data the following morning at Internal Medicine Grand Rounds, Oregon’s principal researcher on Physician Assisted Suicide, Linda Ganzini, MD, MPH, professor of Psychiatry and Medicine, Oregon  Health and Science University (OHSU)will introduce an open discussion of  what a Death With Dignity Act should and should not require of physicians, how the law might be perceived by physicians, and what impact physicians might expect about the effects on themselves of legally assisting a patient to die.  Background reading for this discussion include two articles by Linda Ganzini, MD, Steven K Dobscha, MD, Ronald T. Heintz, MD, and Nancy Press, PhD,  “Oregon Physician’s Perceptions of Patients Who Request Assisted Suicide and Their Families,” (2003), J of Palliative Medicine; 6:3, and “Oregon Physicians’ Responses to Requests for Assisted Suicide: A Qualitative Study,” (2004), J of Palliative Medicine, 7:3.

    Continuing the “Native Voices” Conversation in Utah: How can professionals trained in Western medicine work with Native communities to improve the health status of members?**

    **This Evening Ethics has been developed in collaboration with the Office of Health Equity and Inclusion

    The voices of contemporary American Indians featured this fall in a traveling exhibit at the Eccles Health Sciences Library raise significant ethical issues for health-care professionals and students.  As the exhibit title suggests--"Native Voices:  Native Peoples' Concepts of Health and Illness"—these issues are defined in the contexts of Native People's cultural beliefs and values.  So how can professionals trained in Western medicine work with Native communities to improve the health status of members?  What are the best ways to address health disparities that encompass economic, racial, and historical concerns? And what has been learned so far in outreach programs offered through various departments of the University of Utah health sciences center?

    Featured at our discussion will be three professionals with expertise in health disparities.  Ana Maria Lopez, MD, MPH, is associate vice president health equity and inclusion for University of Utah Health System.  An oncologist, Dr. Lopez also directs Cancer Health Equity at Huntsman Cancer Institute (HCI).  Phyllis Pettit Nassi, M.S.W., Manager Special Populations at HCI, oversees Native American outreach.  She is enrolled in the Otoe/Missouri Tribe and is a member of the Cherokee Nation.  Michael Lei, manager of Global Outreach for the Moran Eye Center, oversees the delivery of ophthalmology care on Utah's reservations and has sixteen years' experience working with the Navajo Nation. 

    To begin our discussion, we'll consider how tribal consultation serves as an ethical model for engagement with Native populations. The process is guided by respect for autonomy, truthfulness, fairness, justice, and beneficence.   We will look at how the University might respond to Governor Herbert's 2014 order for state agencies to establish tribal consultation policies.

    Two articles are suggested background reading: 

     "Addressing disparities in the health of American Indian and Alaska Native People:  The importance of improved public health data" --  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4035867/.

     “Toward Genuine Tribal Consultation in the 21st Century” at  http://heinonline.org/HOL/LandingPage?handle=hein.journals/umijlr46&div=15&id=&page=

    “When a patient requests a white doctor”: Where do we draw the line on allowing patient requests?

    What should clinicians do when patients—or families of patients—request that a doctor of a particular race, ethnic group, religion, gender, gender preference, or any “type,” provide -–or not provide—medical care for them? Clearly, these situations reflect a clash of fundamental values. Do we grant these requests out of a respect for patient choice, or do we reject them as medically irrelevant and offensive? KL Reynolds, JD Cowden, JP Brosco, and JD Lantos discuss various ways to think about, analyze, and respond to these sorts of requests in “When a Family Requests a White Doctor”, We ask that you read this article and bring your questions, concerns, experiences, and thoughtful approaches on how to proceed in similar cases, to share at this Evening Ethics discussion.

    2014 READINGS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

    "How We Perform, Understand, and Learn From Stories of Health Care in Utah" with actress and playwright, Anna Deavere Smith, the 2014 David P. Gardner Lecturer in the Humanities and Fine Arts

    Panel Discussion with Anna Deavere Smith and Samuel Brown, Joni Hemond, Antoinette Laskey, Sara Naeole,  and Chuck Norlin--local health care providers who recognize the importance of stories and performance techniques to educate students, medical providers, and patients and to improve medical practices.  Moderated by Gretchen Case.  

    8:30-10:00AM, Eccles Institute of Human Genetics Auditorium, 15 North 2030 East,1st Floor, No tickets necessary, seating limited.  

    Panelists included: 

    Samuel Brown, MD, MS, FASE

    Dr. Brown is Assistant Professor of Pulmonary and Critical Care Medicine at the University of Utah/Intermountain Medical Center and a member of the Division of Medical Ethics and Humanities.  His research focuses on humanizing the experience of life-threatening illness. As part of this work, he and his group emphasize the power of narrative in navigating an Intensive Care Unit (ICU) stay. Current research and clinical work by Dr. Brown's group is beginning to evaluate the role of narrative in overcoming delusional memories of life-threatening illness--distressingly common after an ICU stay--in order to prevent Post Traumatic Stress Disorder among survivors and families. 

    Gretchen A. Case, PhD

    Dr. Case is an Assistant Professor in the Division of Medical Ethics and Humanities.  With a PhD in Performance Studies, Dr. Case embraces the use of theatrical techniques and literature as well as everyday modes of performance in medical education.  She has developed numerous projects and pedagogical approaches that use Forum Theatre, Readers' Theater, improvisation, playwriting, storytelling and--just as importantly-- listening to stories. 

    Joni A. Hemond, MD, FAAP

    Dr. Hemond is an Assistant Professor of General Pediatrics at the University of Utah School of Medicine and Primary Children´s Medical Center and the Medical Director for the Teen Mother and Child Program/Teen Health Clinic.  Dr. Hemond partners with theater students from the Salt Lake Performing Arts High School, who help train medical residents by performing as patients in scenarios emphasizing the particular needs of adolescents and young adults.  The medical residents interview these young actors, who then provide feedback aimed at enhancing communication skills. 

    Antoinette L. Laskey, MD, MPH, FAAP

    Dr. Laskey, a child abuse pediatrician, is the Division Chief of the Division of Child Protection and Family Health and Medical Director of Safe and Healthy Families, the child abuse program for the University of Utah and Primary Children's Hospital.  Dr. Laskey uses actors for experiential learning on issues related to child fatalities and child abuse.  She has used actors for infant death scene investigation training with law enforcement, death investigators, and child welfare workers.  She also uses actors to educate healthcare workers on how to appropriately and sensitively evaluate suspected child physical and sexual abuse.

    Sarah Nae'ole, MSHS, MBA

    Ms. Nae`ole, who now manages the employee health clinic at ARUP Labs, served as a Practice Coach and Quality Improvement Specialist for several of UPIQ's learning collaboratives.  With Dr. Sydney Cheek-O'Donnell in the Department of Theatre and Dr. Chuck Norlin, she  coordinated the mental health project that leveraged Forum Theater to teach and engage participating practice teams.

    Chuck Norlin, MD

    Dr. Norlin  is a general pediatrician who directs the Utah Pediatric Partnership to Improve Healthcare Quality, aka UPIQ, which aims to assist and support primary care practices throughout Utah in improving the care they provide for children.

    "Re-thinking Brain Death: Questions Raised by Current Cases in the Media"

    The New York Times reports, "Jahi McMath was declared brain-dead after complications from surgery on Dec 9 and Children’s Hospital Oakland wanted to remove her from a ventilator.  But her heart continued to beat, and her family protested the removal in court, so she has remained connected to the machine.”  Are Jahi’s parents simply unwilling to accept the fact of death in their child or does their refusal to let go reflect a more fundamental problem with the notion of brain death?  Are people who have lost whole brain function really dead?  If so, why?

    This Evening Ethics discussion will briefly review this case, and perhaps a very similar case at Primary Children’s Hospital, to explore the medical and philosophical foundations of the determination of death. Three articles to prepare for this session include  http://www.nytimes.com/2014/01/04/us/a-brain-is-dead-a-heart-beats-on.html?_r=0 ,  http://www.nytimes.com/2013/12/22/us/judge-orders-girl-be-kept-on-ventilator.html and Confusion in the Determination of Death: Distinguishing Philosophy from Physiology  

    "Ethical Issues in Evidence-Based Medicine" with Alex Kemper, MD,MPH, MS, 2014 David Green Memorial Speaker

    Preventive care is one of the core components of child health care delivery.  In this Evening Ethics, we will explore some of the challenges surrounding the use in evidence in guiding screening policy.  To what extent should the components of preventive care be standardized?  If so, what should the standards be based upon?  To focus the conversation, we will consider screening services provided through newborn screening programs and those recommended by the American Academy of Pediatrics / Bright Futures for routine well-child care.  How do the standards differ for public health programs versus personal health care services?  How much does evidence play in the recommendations?  How much evidence is sufficient?  How should harms, which are not usually considered, be evaluated?  How can harms and benefits be compared when they accrue to different individuals?  How should cost be considered, especially because the benefit may not happen for many years after the initial screening?  When is screening research?  When should consent be obtained?  What should the expectation be for payers after a recommendation is made?

    In preparation for this discussion, please see the three links below:

    http://brightfutures.aap.org/pdfs/AAP_Bright_Futures_Periodicity_Sched_101107.pdf  (This is the AAP Periodicity Schedule, which outlines recommended screening services)

    http://www.nature.com/news/2011/110713/full/475156a.html (A news article – Newborn Screening: A Spot of Trouble)

    http://nj1015.com/what-is-ankyloglossia-and-why-is-it-harmful-to-kids/  (New Jersey news article on ankyloglossia)

    Dr. Alex Kemper, who will facilitate this discussion, is a practicing pediatrician at Duke Medical Center.  His research focuses on improving the quality of care that children receive by strengthening the linkages between primary care, specialty care, and public health services.

     

    "Transparency and Clinical Trials" with Trudo Lemmens 

    Should the results of clinical trials be made publicly available, whatever they may be?  What reasons support making results public?  Is there a human right to the information from clinical trials? What steps should be taken if researchers are less than fully transparent in disclosing clinical trial results?

    As background reading for this discussion, please see “Access to Information and the Right to Health: The Human Rights Case for Clinical Trials Transparency,” by Trudo Lemmens & Candice Telfer, American Journal of Law & Medicine, 38 (2012): 63-112.

    Trudo Lemmens is Associate Professor and Scholl Chair in Health Law and Policy at the University of Toronto Faculty of Law, with cross appointments in the Faculty of Medicine and the Joint Centre for Bioethics. Professor Lemmens holds a Licentiate in Laws (LL.L) from the KU Leuven  (Belgium) and both a Master of Laws (LLM, specialization bioethics) and Doctorate of Civil Law (DCL) from McGill University. His research focuses on the interface of law, ethics, and professional governance. He is visiting Utah as part of the  Symposium on Secrecy at the Tanner Humanities Center on Friday, March 21st.  

    "Moral Fictions in End of Life Care" with Dan Brock, PhD, 2014 Max and Sara Cowan Memorial Speaker

    Dan W. Brock, 2014 Max and Sara Cowan Memorial Speaker, was the Frances Glessner Lee Professor of Medical Ethics in the Department of Global Health and Social Medicine and Director of the Division of Medical Ethics at the Harvard Medical School. He retired from Harvard at the end of 2013. Previously he was Senior Scientist and a member of the Department of Clinical Bioethics at the National Institutes of Health.  We are honored to have Dr. Brock  facilitate  this Evening Ethics. 

     In “Moral Fictions and Medical Ethics,” by Franklin G. Miller, Robert D. Truog and Dan W. Brock (Bioethics, 2009), Dr. Brock and colleagues argue:

     Conventional medical ethics and the law draw a bright line distinguishing the permitted practice of withdrawing life-sustaining treatment from the forbidden practice of active euthanasia by means of a lethal injection. When clinicians justifiably withdraw life-sustaining treatment, they allow patients to die but do not cause, intend, or have moral responsibility for, the patient’s death. In contrast, physicians unjustifiably kill patients whenever they intentionally administer a lethal dose of medication. We argue that the differential moral assessment of these two practices is based on a series of moral fictions – motivated false beliefs that erroneously characterize withdrawing life-sustaining treatment in order to bring accepted end-of-life practices in line with the prevailing moral norm that doctors must never kill patients. When these moral fictions are exposed, it becomes apparent that conventional medical ethics relating to end-of-life decisions is radically mistaken.

    Dr. Brock asks, “Are we correct about moral fictions? If so, what are the implications for public policy? What are other examples of moral fictions?” Please read “Moral Fictions and Medical Ethics” and join us for what is sure to be thoughtful discussion. 

    "Medical Nihilism, Today?" facilitated by Jacob Stegenga, PhD

    Medical nihilism—the thesis that we should have low confidence in the effectiveness of medical interventions—was expressed by the ancients (Heraclitus, Virgil, and Hippocrates), early moderns (Shakespeare, Dryden, Montaigne, and Molière), and by prominent physicians in the nineteenth century. With the discovery of insulin, antibiotics, and other effective medicines, medical nihilism fell out of favor by the middle of the twentieth century. In the last decade, however, many physicians, epidemiologists, and journalists have begun expressing views like medical nihilism. For instance, Marcia Angell claims that “only a handful of truly important drugs have been brought to market in recent years” while the majority are “drugs of dubious benefit.” Or consider the article by John Ioannidis, the most-viewed article of PLoS Med: “Why Most Published Research Findings Are False”. A prominent article by Ben Goldacre last year was simply titled “The Drugs Don’t Work”. This new wave of medical nihilism focuses on overdiagnosis and overtreatment, widespread bias in research, and the low effectiveness of widely prescribed classes of drugs as reported by recent clinical trials and meta-analyses. What should we make of this new medical nihilism? Are recent drugs as ineffective as Angell and others claim they are? What changes to the broader context of medical research can be made to address the problems articulated by this new wave of medical nihilism? Dr. Stegenga will provide background; there will be no prior background reading needed for this session.

    "Safety in the Balance: The Role of Health Care Professionals in Weighing Patient Autonomy and Safety among Older Adults with Decisional Impairment"  facilitated by Tim Farrell, MD, and Maureen Henry, JD

    Impaired abilities among the elderly can raise concerns about self-neglect, the capacity to consent to or refuse treatment, and the capacity to drive, manage money, or live alone.  Almost every healthcare provider will encounter circumstances in which a person’s decision-making abilities raise ethical challenges.   Providers often grapple with abstract rights and duties and their practical manifestations: the need to balance an individual's safety against the actual harm that providers or courts may cause when they take away an individual's rights to control his or her life. Is weighing these rights what is needed to best address these cases?  If so, how ought these differing rights be weighed and what ought—and ought not—to be considered? How might providers, healthcare teams, and families work together to better help the elderly when they appear to be failing? Tim Farrell, MD, geriatrician, and Maureen Henry, JD, DMEH associate, will facilitate this discussion.  We hope that you will join us with your insights, concerns, and questions about this important topic.

    Two background readings that can be found on our DMEH website will help prepare us for this discussion: “Elder Self-Neglect—How Can a Physician Help?” by Alexander K. Smith, M.D., M.P.H., Bernard Lo, M.D. and Louise Aronson, M.D., New Engl.  Jrnl. Med.  369; 26 (December 26, 2013) and “Does This Patient Have Medical Decision-Making Capacity?” by Laura L. Sessums, JD, MD, Hanna Zembrzuska, MD, Jeffrey L. Jackson, MD, MPH, JAMA 306;4 (July 27, 2011) 

    GENETICS HOT TOPICS:  "Prenatal Whole-Genome Sequencing—Is the Quest to Know a Fetus’s Future Ethical?”

    Genetic technologies are advancing rapidly, now enabling a full genome sequence on a fetus early in pregnancy.  While there are a number of technical challenges to introducing this technology into routine clinical practice, many of the challenges are ethical, legal, and social in nature.  This Evening Ethics discussion will focus primarily on the ethical issues raised by prenatal genome sequencing.  How much information about the genetic nature of the fetus should be provided to parents?  What are the appropriate uses of this information?  What are the risks of generating this information to parents, to the fetus, and to the future parent-child relationship?  How can parents be adequately informed bout the benefits and risks of this form of testing?  This discussion will explore these issues in an interactive discussion co-facilitated by Jeffrey Botkin, MD, MPH and Nancy Rose, MD.

     Background reading and preparation for this discussion can be found on the DMEH website: “Prenatal Whole-Genome Sequencing—Is the Quest to Know a Fetus’s Future Ethical?” Ilana R. Yurkiewicz, B.S., Bruce R. Korf, M.D., Ph.D., and Lisa Soleymani Lehmann, M.D., Ph.D., NEJM 370:3 (January 16, 2014)

    Killing Children in Belgium?

    In 2002, Belgium legalized euthanasia for adults eighteen years of age or older who are terminally or irremediably ill and undergoing intolerable suffering; this law requires voluntary request and has a number of safeguards built in.  In March 2014, King Philippe signed into law a measure passed by Parliament removing the age limit.   The newswires erupted with stories of "Killing Children in Belgium."   Is assisted dying in minors, as some have asked,  "the end of suffering, or the beginning of eugenics"?

     This discussion, facilitated by Peggy Battin, PhD, MFA,  end-of-life ethicist, and Jeff Botkin, MD, MPH, pediatrician and Medical Ethics and Humanities Division Chief,  will explore what is actually the case in Belgium, how it compares with what is the case in the U.S., and what the media response to the new Belgian law says about the situation both there and here.  Background reading materials, found on the DMEH website, include: “Pediatric Euthanasia in Belgium: Disturbing Developments” (JAMA 4/17/14), “Killing Children in Belgium” ( MSU Bioethics 4/28/14) , and “Forgoing Medically Provided Nutrition and Hydration in Children.” (Pediatrics 7/27/2009).

    "When the Doctor Knows Best: Have Patients' Rights Gone too far?" with Barron Lerner, 2014-15 Max and Sara Cowan Memorial Speaker

    The 1970s and 1980s saw the overthrow of medical paternalism, a system in which doctors made decisions for their patients, even actually deceiving them if they believed it was necessary. Patient autonomy, championed by the new bioethics movement, had won the day. Patients and families became the decision-makers, even for complicated medical questions. This discussion will ask whether the pendulum has swung too far in the direction of patients' rights, leading to cookbook medicine, ineffective interventions, rising costs and situations in which doctors feel they are actually "doing harm." Using stories from the career of his father, Dr. Phillip Lerner, an unabashed paternalist, Barron Lerner will explore the pros and cons of current strategies for making medical decisions. Background reading for this Evening Ethics is Barron Lerner’s July 3, 2014 article in the Wall Street Journal, “When the Doctor Knows Best.”

    "Ethics and Ebola"

    Hospitals across the United States (and the world) are preparing for the possibility that a patient will arrive infected with Ebola. This new epidemic is raising a host of ethical issues that occur when the patient is both victim and vector. Are healthcare workers obligated to treat Ebola patients and, in turn, risk contracting the disease themselves? How should experimental medications and interventions be distributed fairly? When are quarantine, surveillance, and travel restrictions appropriate and inappropriate? And what can we learn from the effective and ineffective responses to past epidemics?  As background for this session, please read “Ebola and the Epidemics of the Past.”  Please join us for this discussion facilitated by infectious disease physician, and Chief, emeritus, of the Division of Medical Ethics and Humanities, Jay Jacobson, MD, and Jim Tabery, PhD.

    2013 READINGS

    Series is approved for 1.5 hours of CME credit     ~     When in person, refreshments are offered

    "How Doctors Help Us to Die" with Marcia Angell, MD (Cowan Memorial Lecturer)

    Throughout the U. S. it has been legal for over 20 years for patients (or their surrogates) to have physicians withdraw life-sustaining treatment, including food and hydration, to bring about death..  It is also legal for physicians to prescribe opiates at doses that will hasten death as long as they can make the case that it is necessary to relieve suffering.  And it is legal for physicians to sedate dying patients to unconsciousness and then allow them to die of dehydration.  Yet, in only three states is it legal for a physician to write a prescription for medication that will bring about the death of terminally ill patients, and then, only in tightly restricted circumstances.  What are the ethical distinctions between these methods of hastening death?  And on what basis are they drawn?  Please prepare for this discussion by reading Dr.Marcia Angell’s  10-12-12 New York Review of Books article,  “May Doctors Help You to Die?” 

    "Can We Talk about the Nuremberg Code?" with Alice Dreger, PhD (David Green Memorial Lecturer)

    Why do we keep seeing the same basic ethical mistakes over and over again in clinical research, particularly failure of informed consent? Might the use of unstudied medical interventions in general medical practice constitute a major ethical problem? What might prevent good people from doing bad things? And how are all these questions ultimately related? Our conversation will center on these questions, launching from a new essay Dr. Dreger has drafted for our discussion, “Can We Talk about the Nuremberg Code?” This essay explores our relationships with the myths and realities of the history of human subjects research and Nazi atrocities, in part by using her own family’s history in Poland. Ultimately the essay argues for a valuing of clinical humility of a type that bridges scientific and moral humility, a clinical humility that recognizes the potential for individual failure and for resistance to institutionalized evils.

    "Is One Minute Enough? Patient Education Approaches to Prenatal Testing"

    Despite technological advancements in prenatal testing for fetal abnormalities, significant challenges remain for effectively informing couples about their risk and options. Prenatal diagnosis for aneuploidy and neural tube defects has been widely available for decades and this clinical service has been the focus of extensive ethical debate and the source of substantial legal liability for clinicians.  Nevertheless, research demonstrates that pregnant couples are poorly informed about their risks and options.  It is widely recognized that current standards for patient education in this domain are ineffective. it is unknown how pregnant couples are informed about prenatal testing and the current education approaches.

    A pilot study was conducted funded by the University of Utah College of Nursing Research Committee. The purpose of this research was 1) to describe the specific content and amount of time typically spent by prenatal care providers in Salt Lake City in delivering prenatal testing education during early pregnancy; and 2) to identify gaps in prenatal education specific to prenatal testing. Results showed that prenatal testing was not discussed with patients approximately 50% of the time. When discussed, the most common approach was to provide a brochure and to encourage the patient to think about testing. In general, only 50% of the clinical visits discussed prenatal testing and of those, less than one minute was spent during the prenatal encounter on prenatal testing options and the content of this discussion primarily focused on how to schedule the screening.  

    Please join us to learn more about this study, the ethical questions it raises, and to share your thoughts and ideas about approaches to improving patient education about prenatal testing.  What type of information do think is important to give expecting parents to make an informed decision?  How would you assess if someone made an informed decision? (There is no background reading for this Evening Ethics session.)

    "American Eugenics--from Long Island to Auschwitz and Its Modern Shadow" with  Edwin Black

    A special Evening Ethics talk on Wednesday September 25th at 4:00–5:30pm in the Eccles Institute of Human Genetics auditorium will feature Edwin Black's talk,  American Eugenics--from Long Island to Auschwitz and Its Modern Shadow.  A book signing will follow. Edwin Black is a New York Times bestselling international investigative author of more than 80 award-winning editions in 14 languages in 65 countries. He focuses on genocide and hate, corporate criminality and corruption, governmental misconduct, academic fraud, philanthropic abuse, oil addiction, alternative energy and historical investigation. He is author of the best seller, War Against the Weak: Eugenics and America's Campaign to Create a Master Race. For more information on Edwin Black please see: http://www.edwinblack.com

    "Medical Errors and Malpractice, On Stage" 

    This Evening Ethics Discussion is sure to spark discussion about how medical mistakes reverberate emotionally for families and for physicians and providers. 

    This session is in anticipation of the new play, Love Alone, by Deborah Salem Smith, which opens its regional premiere at the University of Utah Department of Theatre on November 14th and runs through November 24th in Studio 115. 

    Love Alone has been brought to the University of Utah through the latest of several collaborative efforts between the Division of Medical Ethics and Humanities and the University of Utah Theatre Department. The play originally premiered in conjunction with Brown University Medical School, and Ms. Smith has taken the play, in whole or in part, to other medical schools, as well. 

    In Love Alone, “after a routine medical procedure goes tragically wrong, a lawsuit ensues and the lives of both the patient’s family and the doctor charged with her care are transformed. Love Alone compels us to reflect on how we treat those we love in times of crisis and how we maintain control of our lives when we lose people we love.” 

    At this Evening Ethics, the Utah cast will perform short scenes from Love Alone from 5:30pm-6:00pm, after which discussion will follow. Because the actors will perform during the first half hour, there will be no background reading, but we do ask that people arrive promptly at 5:30 so as to see the cast perform. We are honored to have around the discussion table, the playwright, Deborah Salem Smith, the director, Andra Harbold, and the Head of Theater studies at the University of Utah, Sydney Cheek- O’Donnell, as well as the two medical advisors who worked with the Utah cast, Lauren Florence, MD, and Jim McGauley, MD. Gretchen Case, PhD, will facilitate discussion. 

    The New York Times calls Love Alone a, “lucid, deeply nuanced and fearless work.” The Boston Globe calls it “…first rate…a gleaming gem.” For more information about the play and to buy tickets, see http://www.theatre.utah.edu/event/love-alone/

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