Berman Institute Monthly Newsletter

Fighting Back Against A Critical Shortage of Vital Pediatric Cancer Drugs

Berman Institute of Bioethics faculty member Yoram Unguru, a pediatric hematologist/oncologist, has spent years sounding the alarm about the skyrocketing number of drug shortages in the United States. But even he wasn’t prepared for the notice he received last month of an imminent national shortage of vincristine, the single most widely used chemotherapy agent in childhood cancer.

“This was truly a nightmare situation.  Vincristine is utilized by children with nearly every type of cancer, including leukemias, lymphomas, brain tumors, bone tumors, musculoskeletal tumors, neuroblastoma, and more,” said Unguru who traced the origins of the shortage to a pharmaceutical company’s decision to stop manufacturing vincristine earlier this year.

Unguru spearheaded a rapid response, appearing in the New York Times, NPR, and media outlets across the nation to increase awareness of the impending shortage and its impacts. Less than a month later, in the face of intense public pressure, the manufacturer announced plans to resume production of vincristine. Read more.

Announcements

Ruth Faden Receives Hasting Center’s 2019 Beecher Award for Lifetime Achievement

Ruth Faden, PhD, MPH, founder of the Johns Hopkins Berman Institute of Bioethics and the Philip Franklin Wagley Professor of Bioethics, was named the recipient of The Hastings Center’s 2019 Henry Knowles Beecher Award for lifetime achievement in bioethics.

In her recently published book, Structural Injustice: Power, Advantage, and Human Rights (September 2019, Oxford University Press), Dr. Faden and co-author Madison Powers build on their longstanding call for bioethics to expand its understanding of justice to put forward a groundbreaking theory of social injustice, more broadly. Their theory forges links between human rights and fairness norms and is built to fit a real-world characterized by deprivation, human rights violations, disadvantage, and unfair power relations, both within and across nations.

Faculty and Postdoctoral Positions Available in Fall 2020

The Berman Institute invites applications (due December 1) for a number of full-time, tenure track faculty positions:

  • Bioethics and General Internal Medicine Faculty Position, focusing on bioethics and medicine, with an appointment in the JHU School of Medicine’s Division of General Internal Medicine and a core faculty affiliation in the Berman Institute;
  • 1-2 Bioethics and Health Policy Faculty Positions, focusing on bioethics and health policy, with an appointment in the JHU Bloomberg School of Public Health and a core faculty affiliation in the Berman Institute.

Applications for the Berman Institute’s postdoctoral fellowships are due December 16. In addition to our flagship Hecht-Levi Fellowship, additional new two-year postdoctoral fellowships with a specific focus are available:

  • Joint Fellowship in Ethics and Infectious Disease;
  • Inaugural Fellowship in Philosophy and Mental Disorder;
  • Fellowship in the Ethics and Regulatory Aspects of Pragmatic Clinical Trials.

Debra Mathews, PhD, MA, and Joel Bader, PhD (Biomedical Engineering) received a Rules of Life award from the National Science Foundation to research Life with a RNA Genome. This work will explore origins-of-life by studying the transition from a primordial world in which RNA served as the repository of biological information to the first cells with DNA-based genomes.

The National Academy of Medicine released a consensus statement, “Taking Action Against Clinician Burnout: A Systems Approach to Professional Well-Being.” Cynda Rushton, PhD, RN, FAAN, served on the committee.

Dr. Rushton  is recipient of the Sigma Theta Tau International Honor Society of Nursing (Sigma) 2019 Daniel J. Pesut Spirit of Renewal Award. This award is given to a nurse leader whose purposeful reflection in practice and mindful understanding of human relationships displays a futuristic vision for nursing practice.

Yoram Unguru, MD, MS, MA, was selected as a 2019 “Baltimore Top Doc” as featured in Baltimore Magazine.

Marie Nolan, PhD, RN, FAAN, received the Distinguished Career Achievement Award from the Hospice and Palliative Care Nurses Association. This award recognizes someone who has made a major contribution that advances the expert care of the seriously ill. This award honors an individual who has made a major contribution in one or more of the areas of research and development, career path development, and education in palliative nursing.

Upcoming Events

Reading and Moderated Conversation with Dani Shaprio, Author of the NYT Bestselling Memoir, Inheritance, on Jan. 13, 2020

As part of the Berman Institute of Bioethics’ 25th Anniversary, Dani Shapiro will read an excerpt from her New York Times best selling memoir, Inheritance, followed by a moderated conversation with Dr. Ruth Faden. After discussing the ethical dimensions of the issues raised by her memoir, there will be a Q&A with the diverse medical and academic community, and a reception to follow. The event will be held in the Johns Hopkins Hospital’s Chevy Chase Auditorium.

December 9, Noon-1:15 p.m.
Seminar: Face On or Off: Face Transplants and the Resistance to Categorization
Speaker: Shawna Pearl
Location: Feinstone Hall, Bloomberg School of Public Health. Lunch will be provided.

December 17, Noon-1:15 p.m.
Ethics for Lunch
Location: Room 2117, Sheik Zayed Tower, Johns Hopkins Hospital. Lunch will be provided.

Publications

Joseph A. Carrese, MD, MPH, FACP, published “The Importance of Hanging in There,” in The American Journal of Medicine. In this touching and insightful piece, Carrese writes about a clinical case with deep personal meaning – his father – addressing issues such clinical ethics issues as doctor-patient relationship and communication, non-abandonment, patients as persons, and more.

Full monthly list of publications by Berman Institute authors

Aligning Evidence Generation and Use Across Health, Development, and Environment,” Current Opinion in Environmental Sustainability
Authors: Heather Tallis, Katherine Kreis, Lydia Olander…Jessica Fanzo, et al.

Structural Injustice: Power, Advantage, and Human RightsOxford University Press
Authors: Madison Powers, Ruth Faden

Patient’s Perspectives of Experimental HCV-Positive to HCV-Negative Renal Transplantation: Report from a Single Site,” AJOB Empirical Bioethics
Authors: Sarah E. Van Pilsum Rasmussen, Shanti Seaman, Diane Brown, Mark Sulkowski, Dorry L. Segev, Christine M. Durand, Jeremy Sugarman

Pediatric Chronic Critical Illness: Gaps in Inpatient Intrateam Communication,” Pediatric Critical Care Medicine
Authors: Ryan S. Hirschfeld, Silvana Barone, Emily Johnson, Renee D. Boss

Should Genetic Testing for Variants Associated with Influenza Infection Be Mandatory for Health Care Employees? AMA Journal of Ethics
Author: Michelle Huckaby Lewis

The Importance of Hanging in There,” The American Journal of Medicine
Author: Joseph A. Carrese

Can Diets Be Healthy, Sustainable, and Equitable?” Current Obesity Reports
Authors: Jessica FanzoClaire Davis

Confronting Bias and Discrimination in Health Care—When Silence Is Not Golden,” JAMA Internal Medicine
Authors: Lisa A. Cooper, Mary Catherine Beach, David R. Williams

Knowledge and debate in the American Journal of Clinical Nutrition: new sections, new science, and looking forward and outward,” American Journal of Clinical Nutrition
Authors: Christopher P Duggan, Lorraine Brennan, Parul Christian, Jessica Fanzo, David S Ludwig, Editors of the American Journal of Clinical Nutrition

The Baltimore Criteria for an Ethical Approach to Penile Transplantation: A Clinical Guideline,” Transplant International
Authors: Ledibabari M. Ngaage, Adekunle Elegbede, Jeremy Sugarman, et al

The Johns Hopkins Primary Care for Cancer Survivor Clinic: lessons learned in our first 4 years,” Journal of Cancer Survivorship
Authors: Youngjee Choi, Archana Radhakrishnan, Darshan Mahabare, Shalom Patole, Sydney M. Dy, Craig E. Pollack, Zackary D. Berger, Kimberly S. Peairs

BI In the News

Jeffrey Kahn, PhD, is featured in a new Netflix series, “Unnatural Selection,” which documents new developments in the science of gene-editing that raise moral, social and environmental impact questions about where we, as a society, should draw the line. The series was covered in Wired and Vox. Watch “Unnatural Selection.”

Dr. Kahn was interviewed by The Associated ahead of his talk there on gene editing on November 5.

Yoram Unguru, MD, MS, MA, was featured on four episodes of podcast, The Etherist, on drug shortages in pediatric oncology. [Episode 1, Episode 2, Episode 3, Episode 4].

Dr. Unguru’s work on drug shortages was also featured in two articles in The New York Times. The first articlecovered physicians’ decision making in the face of an ongoing vincristine shortage. Dr. Unguru also discussed this topic on NPR’s All Things Considered. The second New York Times article covers a recent FDA report detailing the economic causes of drug shortages in the US. Dr. Unguru provided comments for both. The Times articles received coverage in The Hill and Forbes.

Dr. Unguru also wrote an op-ed on the topic for the Bill of Health Blog, and spoke to Haaretz about one pharmaceutical company’s impact on shortages. He was interviewed on the subject on WFTV and provided comments to Medscape Oncology and Cancer Therapy Advisor.

Dr. Unguru and Jeremy Greene, MD, PhD, were quoted in Hopkins Medicine Magazine in an article on the shortfalls of our pharmaceutical marketplace.

Cynda Hylton Rushton, PhD, RN, FAAN, commented on two pieces for KFGO in Fargo-Moorhead, ND. One articlecovered a real-time mood survey deployed in emergency rooms. The other covered social media as a source of distraction for nurses.

Dr. Rushton was interviewed by Johns Hopkins School of Nursing’s Newswise about her participation in the National Academy of Medicine’s study on clinician burnout.

Jessica Fanzo, PhD, along with Mario Herrero, wrote for The Guardian: “What we eat matters: to change climate crisis, we need to reshape the food system.”

Professor Fanzo was also featured in a Reuters article that asked experts “What is the one thing we need to change in the food system to make healthy diets available for everybody?”

Travis Rieder, PhD, was interviewed by Newsweek in response to recent opioid prescribing guidelines from the DEA.

Megan Collins, MD, MPH’s work on Vision for Baltimore was covered in the HUB

Leonard Rubenstein, JD, gave comments to BMJ News for their coverage of Médecins Sans Frontières (MSF)’s evacuation from Syria.

Outreach

On Nov. 25, Jeremy Sugarman, MD, MPH, MA, and Joseph Ali, JD, gave presentations in Penang, Malaysia, titled “Ethics and Regulatory Challenges in Pragmatic Clinical Trials” and “Lessons learned in Developing Master’s-level Training Programs in International Health Research Ethics” at the 19th annual Forum for Ethical Review Committees in the Asian & Western Pacific Region (FERCAP) International Conference.  This year’s theme is “Harmonizing Research Ethics in a Global Setting.” Also presenting at the FERCAP Conference are counterparts from the University of Malaya, partners in the MORES program.  The MORES program is a Berman Institute-University of Malaya collaboration to develop a Master of Health Research Ethics program. This program is the first of its kind in Malaysia, and one of the few in Southeast Asia.

The curriculum is tailored to Malaysian and Southeast Asian contexts to prepare graduates to thoughtfully and skillfully engage in a wide range of pressing ethical challenges in international biomedical and social science research.  More information about the MOHRES program can be found here: https://mohre.um.edu.my/ or https://www.youtube.com/watch?v=ot5rPFkDGq4&feature=youtu.be

November 19
Baltimore, MD
Gail Geller, ScD, MHS
, gave the Pediatric Grand Rounds at Sinai Hospital. Her talk is titled “The Paradox of Promise and the Many Faces of Hope in Life-Limiting Pediatric Disease.”

November 18
Owings Mills, MD
Jeffrey Kahn, PhD, MPH
, served as a guest speaker at Stevenson University, where he will talk about “Ethics and Reproductive Technologies:  Past Present, and Future.”

November 12
Kingston, RI
Jeremy Sugarman, MD, MS, MA
, gave a lecture at the University of Rhode Island titled “Ethical Controversies in Medicine and Medical Research: The Interplay of Secular Bioethics and Religion” as part of the ‘Religion in America’ Honors Colloquium.

 November 8
Washington, DC
Justin Bernstein, PhD
, and Joe Ali, JD, spoke at USAID’s STAR Intern program about Ethics and Public Health.

November 8
Baltimore, MD
Travis Rieder, PhD
, lectured at the Johns Hopkins School of Nursing on his book In Pain: A Bioethicists’ Personal Struggle with Opioids.

November 7
Baltimore, MD
Joseph Carrese, MD, MPH, FACP
, was an invited panelist for Department of Social Work Grand Rounds at Johns Hopkins Hospital to address this topic: ““Exploring the clinical challenges and access to resources for undocumented patients in our healthcare system”.  Within that broader topic, Dr. Carrese addressed the ethical and legal considerations involved in caring for this population.

November 5
Baltimore, MD
The Associated: Jewish Federation of Baltimore’s Maimonides Society hosted an event on “Genetic Tinkering: Could We? Should We?” Jeffrey Kahn, PhD, MPH, spoke and Yoram Unguru, MD, MS, MA, moderated.

November 3
Philadelphia, PA
Travis Rieder, PhD
, served on a panel to discuss the film 8 Billion Angels at the APHA Annual Meeting and Expo.

October 21
Baltimore, MD
Travis Rieder, PhD
, led a book discussion on In Pain at the Center for Public Health Advocacy at the Johns Hopkins Bloomberg School of Public Health.

October 18
Baltimore, MD
Alexis Walker, PhD
, participated in the Sawyer Seminar, presented by the Johns Hopkins Center for Humanities & Social Medicine, the Department of Anthropology and the Department of History of Medicine. The seminar was titled “Pandemic Preparedness: Financing Responses in an Age of Uncertainty.”

September 17
Baltimore, MD
Justin Bernstein, PhD
, and Joe Ali, JD, served on a panel with Amelia Buttress, PhD, for the Health Systems Seminar at the Bloomberg School of Public Health. The panel discussed “Public Health and Philosophy,” Panel on Public Health, Philosophy, History, and Values.”