Evening Ethics Discussions 2021

"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 (Utah Center for Excellence in Ethical, Legal and Social Implications) 

 

 

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, click here.

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

 "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:

“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:

 “A Sense of Story, or Why Teach Reflective Writing,” by Rita Charon, MD, PhD & Nellie Hermann, MFA(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3247912/)

“Why Doctors Write,” by Rafael Campo, MD (From Alternative Medicine by Rafael Campo, Durham, NC: Duke University Press, 2014)Pdf’s of both readings available from linda.carrlee@hsc.utah.edu  

“Ethical Challenges in Pediatric Vaccine Clinical Trials,” with Steven Joffe, MD, MPH, 2020-21 David Green Memorial Speaker

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 )

“Enrolling Minors in COVID-19 Vaccine Trials,” by Kevin Mintz, PhD, et.al. (Pediatrics, vol. 147, no. 1, March 2021) 

“SARS-CoV-2 vaccine testing and trials in the pediatric population: biologic, ethical, research, and implementation challenges,” by Dan M. Cooper, et.al. (Pediatric Research, special article, February 24, 2021) )

Optional:

“Covid Vaccines for Kids Are Coming, but Not for Many Months,” by Apoorva Mandavilli (NY Times, Feb. 12, 2021)

“Why Kids Might Be Key to Reaching Herd Immunity,” by Sarah Zhang (The Atlantic, Jan. 21, 2021)

“The Importance of Advancing Severe Acute Respiratory Syndrome Coronavirus 2 Vaccines in Children,” by Carol M. Kao, et.al. (Clinical Infectious Diseases, vol. 72, no. 3, 2021)

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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 at:

https://www.youtube.com/channel/UCNQP-M_3-PdPDvnICr2Fjpg

"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

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This Evening Ethics is a collaboration with Utah Humanities.  We jointly welcome Katherine Standefer to this Evening Ethics and to the 2021 Utah Humanities Book Festival 

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)

1. "At the University Inn" by Katherine Standefer (The Kenyon Review, 2018)

2. Chapter 5 of Lightning Flowers: My Journey to Uncover the Cost of Saving a Life (Little, Brown Spark 2020) --attached

3. Excerpt from Chapter 10 of Lightning Flowers  --attached

4. Optional: Excerpt from Prologue and Chapter 1 of Lightning Flowers as available via The New York Times (includes description of the relevant heart condition, Long QT Syndrome)

"Don't Let the Lion tell the Giraffe's Story": How the Curation of History Hobbles Medical Ethics with Harriet A. Washington, 2021 Cowan Memorial  Lecturer and Priscilla M. Mayden Endowed Lecturer

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

“Pandemics & Panels: What Have We Learned about Global Health Crises Through Comics?” with MK Czerwiec, RN, MA, 2021 Health Humanities Lecturer

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/profile/mk-czerwiec/

COVID-19 Comics https://www.graphicmedicine.org/covid-19-comics/

Optional:

Taking Turns: Stories from HIV/AIDS Care Unit 371

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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.

 

 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 of The Center for Health Ethics, Arts, and Humanities (CHeEtAH) and The Utah Center for Excellence in Ethical, Legal, and Social Implications Research (UCEER)

UCEER

 

DISCLOSURE:

This program is approved for 1-½ hours of CME credit.

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