Berman Institute’s Jeremy Greene Awarded Guggenheim Fellowship

Medical historian Jeremy Greene is one of 171 scientists, writers, scholars, and artists awarded Guggenheim Fellowships this year, a prestigious distinction that recognizes achievements and exceptional promise.

A Berman Institute faculty member, Greene is the William H. Welch Professor of Medicine and History of Medicine and director of the Department of the History of Medicine at the Johns Hopkins University School of Medicine. His fellowship is in the category of the history of science, technology and economics.

Greene is a noted historian of how medical technology influences our understandings of sickness and health. He has written award-winning books on the relationship of pharmaceutical marketing to medical practice, the political economy of generic drugs, and the role of electronic media in medical care.

His most recent book, The Doctor Who Wasn’t There (University of Chicago Press), traces the long arc of enthusiasm for—and skepticism of—electronic media in health and medicine. Over the past century, a series of new technologies promised to democratize access to healthcare. From the humble telephone to the connected smartphone, from FM radio to wireless wearables, from cable television to the “electronic brains” of networked mainframe computers: each new platform has promised a radical reformation of the healthcare landscape. With equal attention to the history of technology, the history of medicine, and the politics and economies of American healthcare, Greene explores the role that electronic media play, for better and for worse, in the past, present, and future of our health.

His current research project, Syringe Tide: Disposable Technologies and the Making of Medical Waste, focuses on the scientific, social, and economic basis for the increasing disposability of medical technology and solutions to reduce the global impact of medical waste.

Guggenheim Fellows receive financial awards and were selected from a pool of nearly 2,500 applicants. The Guggenheim Foundation was established in 1925 by U.S. Senator Simon Guggenheim and his wife Olga Guggenheim in memory of their son John. Since their creation, the foundation has provided nearly $400 million in fellowships.

Addressing Social Justice Through the Lens of Henrietta Lacks

Among the many disruptions of the pandemic, one particular disappointment was the cancellation of the in-person annual meeting of the American Society for Bioethics and Humanities (ASBH), scheduled for Baltimore and set to coincide with the Berman Institute’s 25th Anniversary Celebration and the centennial of Henrietta Lacks’s birth. Yet despite the switch to a virtual format, the Berman Institute was able to host a plenary session that was the talk of the meeting and continues to reverberate.

“Social Justice and Bioethics Through the Lens of the Story of Henrietta Lacks,” was moderated by Jeffrey Kahn and featured Ruth Faden as a panelist. She was joined by Henrietta Lacks’s granddaughter, Jeri Lacks, architect Victor Vines, and Georgetown University Law Center bioethicist Patricia King.

Faden began the session by providing an overview of the Henrietta Lacks story, famed in the context of structural injustice.

“The structural injustice of racism defined in pretty much every way how this story unfolded,” she said. “What is wrong about what happened to the Lacks family engages every core element of human well-being. There were assaults on the social basis of respect, and of self-determination, on attachments, on personal security and on health. Mrs. Lacks and her children were poor Black people in a segregated world in which the most profound injustices of racial oppression were daily features of their lives.”

Faden was followed by Jeri Lacks who expressed the importance of continuing to let the world know about her grandmother’s story.

“Her cells were used to develop the polio vaccine and to treat HIV, and in creating in vitro fertilization. She is a person who continues to give life, and to preserve life,” said Lacks. “No matter what your race, your age, your social circumstances, she continues to improve your life.”

Victor Vines, an architect who was part of the architect team leading programming and planning for the National Museum of African American History and Culture and led the feasibility study for what will be Johns Hopkins University’s Henrietta Lacks Hall, spoke next about addressing racial injustice through architecture and design.

“When we started work on Lacks Hall, we didn’t talk a lot about architecture or design. We talked about what that story is that we want to tell through the building. Meeting with the Lacks family was critically important to that,” Vines said. “We had to understand what they went through and what they care about. The building still has to function and house the Berman Institute, so we had to meet their needs. And we discovered a third client, the East Baltimore community. At the end of the day, this building and university reside within that community, and they will be called to embrace this project – or not.”

King concluded the panel with a riveting and wide-ranging discussion that touched upon intersectionality, segregation, the Tuskegee experiments and participation in clinical trials, COVID, race as a social construct, and the role of consent, all within the framework of Henrietta Lacks’s story.

“Our narratives are important and should be thought of as lessons or homework for institutions,” she said. “They not only document the deep distrust we bring to health encounters but also convey relevant aspects of our lives that should be appreciated.”

As the session ended Kahn noted that perhaps it was fortunate the session had been virtual, so the recording “could be shared with others for posterity. I’m not quite speechless, but maybe close,” he said.

Tracking the Long Arc of Big Data in Medicine

Big data may be the future of medicine but is also its past. As the scale of big-data medicine has changed, many of the hopes, fears, and challenges have not. Diagnostic algorithms, electronic medical records, and the exponential growth of published medical research offer challenge and opportunity much as they have since the computer’s introduction into medicine 50 years ago.

In the paper “Digital Futures Past — The Long Arc of Big Data in Medicine,” published this week in the New England Journal of Medicine, two Johns Hopkins history of medicine scholars track the history of digital medicine from late 1950s efforts by Cornell physicians and IBM engineers to build a computer that could calculate all hematologic diagnoses.

“What happens when human intelligence cannot comprehend the pathways of computer decisions?How does computerization of medical information change physicians’ roles or replicate the foibles of human diagnostic reasoning? What unintended displacements and transformations will computerized medicine produce next? These are not new questions, nor are they resolved by new technology,” write Berman Institute faculty member Jeremy Greene and Andrew Lea of the Johns Hopkins Center for Medical Humanities and Social Medicine.

Greene and Lea write that the promise of big data in medicine today recalls the optimism that accompanied the computer’s introduction into medicine 50 years ago, but also raises similar concerns.

Just as physicians in the 1950s feared building computers that would make diagnoses without humans understanding their decision making process, there are similar fears today that machine learning might – instead of eliminating lapses in human judgment — harden errors and biases into rhythms of care.

Around the same time, physicians began to see the advantages of storing patient records digitally rather than on paper, but systems often broke down and patient care was compromised. Today, electronic health records have eclipsed paper records in U.S. health care, but Greene and Lea say “studies document lingering clinician unease with the integration of computer systems into the clinical world. The promise of producing new, lifesaving forms of health data has yet to be fully realized,yet the EHR has altered doctor–patient relationships, increased the amount of time clinicians spend documenting their efforts, and been identified as a leading source of physician burnout.”

The authors also cite the double-edged sword of today’s digitization of medical information. While online repositories make vast amounts of medical literature available at the touch of a keyboard, their contents date back only to 1963. As a result, vitally important medical information circulated before that date can go unseen, with grave consequences.

“At every scale of ‘big data,’ computers have offered elegant technological fixes to social, professional, and informational challenges — while introducing new problems,” write Greene and Lea.“Then as now, computers offer a means to transcend the human mind’s limitations in a world of expanding information and generate concern about entrusting life-and-death matters to unseen algorithms.”

Honoring an Immortal Contribution

Johns Hopkins University President Ronald J. Daniels and Paul B. Rothman, CEO of Johns Hopkins Medicine and dean of the medical faculty of the Johns Hopkins University School of Medicine, along with Berman institute Executive Director Jeffrey Kahn and descendants of Henrietta Lacks, recently announced plans to name a new multidisciplinary building on the Johns Hopkins East Baltimore campus in honor of Henrietta Lacks, who was the source of the HeLa cell line that has been critical to numerous advances in medicine.

Surrounded by descendants of Lacks, Daniels made the announcement at the 9th annual Henrietta Lacks Memorial Lecture in the Turner Auditorium in East Baltimore.

“Through her life and her immortal cells, Henrietta Lacks made an immeasurable impact on science and medicine that has touched countless lives around the world,” Daniels said. “This building will stand as a testament to her transformative impact on scientific discovery and the ethics that must undergird its pursuit. We at Johns Hopkins are profoundly grateful to the Lacks family for their partnership as we continue to learn from Mrs. Lacks’ life and to honor her enduring legacy.”

Henrietta Lacks’ contributions to science were not widely known until the 2010 release of the book The Immortal Life of Henrietta Lacksby Rebecca Skloot, which explored Lacks’ life story, her impact on medical science and important bioethical issues. In 2017, HBO and Harpo Studios released a movie based on the book, with Oprah Winfrey starring as Deborah Lacks, Henrietta Lacks’ daughter.

Several Lacks family members attended today’s event. “It is a proud day for the Lacks family. We have been working with Hopkins for many years now on events and projects that honor our grandmother,” said Jeri Lacks, granddaughter of Henrietta Lacks. “They are all meaningful, but this is the ultimate honor, one befitting of her role in advancing modern medicine.”

The building, which will adjoin the Berman Institute of Bioethics’ current home in Deering Hall will support programs that enhance participation and partnership with members of the community in research that can benefit the community, as well as extend the opportunities to further study and promote research ethics and community engagement in research through an expansion of the Berman Institute and its work.

The story portrayed in The Immortal Life of Henrietta Lackspoints to several important bioethical issues, including informed consent, medical records privacy, and communication with tissue donors and research participants.

“The story of Henrietta Lacks has encouraged us all to examine, discuss and wrestle with difficult issues that are at the foundation of the ethics of research, and must inform our relationships with the individuals and communities that are part of that research,” said Jeffrey Kahn, director of the Johns Hopkins University Berman Institute of Bioethics. “As a result, students, faculty and the entire research community at Johns Hopkins and around the world do their work with a greater sensitivity to these critical issues.”

In 2013, Johns Hopkins worked with members of the Lacks family and the National Institutes of Health (NIH) to help broker an agreement that requires scientists to receive permission to use Henrietta Lacks’ genetic blueprint in NIH-funded research.

The NIH committee tasked with overseeing the use of HeLa cells now includes two members of the Lacks family. The medical research community has also made significant strides in improving research practices, in part thanks to the lessons learned from Henrietta Lacks’ story.

“It has been an honor for me to work with the Lacks family on how we can recognize the contribution of Henrietta Lacks to medical research and the community. Their willingness to focus on the positive impact of the HeLa cells has been inspiring to me. The Henrietta Lacks story has led many researchers to rededicate themselves to working more closely with patients,” said Daniel E. Ford, vice dean for clinical investigation in the school of medicine. “The new building will be a hub for the community engagement and collaboration program of the NIH-supported Institute for Clinical and Translational Research.”

Groundbreaking on the building that will be named for Henrietta Lacks is scheduled for 2020 with an anticipated completion in 2022.

To learn more about Henrietta Lacks and the wide-ranging impact of HeLa cells on medical research,

please visit:www.hopkinsmedicine.org/henriettalacks.

Jeremy Greene, MD, PhD

Greene’s most recent book, Generic: The Unbranding of Modern Medicine, narrates the history of generic drugs as a means of exploring problems of similarity and difference in modern medicine.   Generic drugs are never fully identical to the brand name products they imitate.  Rather, their claims to being ‘the same’ lies in proof that they are similar enough in ways that matter to be functionally interchangeable. As the market for generic substitutes has grown–from only 10% of the American pharmaceutical market in 1960 to nearly 80% by 2010–so too have epistemological and epidemiological conflicts over how one can prove that generics are truly equivalent to their brand-name counterparts.   These debates over generic drugs reveal fundamental conflicts over what it means to practice rational medicine, and what role consumers, physicians, insurers, and others should have in defining that rationality.

He has begun work on a new project, Medicine At a Distance, which examines how changing expectations of instantaneous communications through electric, electronic, and digital media transformed the nature of medical knowledge.  Most histories of medical technology focus on heroic diagnostic and therapeutic innovations–like X-rays and artificial hearts–which stand as visible symbols of medical modernity.   His research is focused on recapturing how more  mundane technologies of communication enabled and altered the production, circulation, and consumption of medical knowledge, from telegraph to text pager, telephone to telemedicine, fax machine to Facebook.  This work is supported by a  Faculty Scholars Fellowship from the Greenwall Foundation.

Zackary Berger, MD, PhD

Dr. Berger is Associate Professor in the Johns Hopkins Division of General Internal Medicine and Core Faculty at the Johns Hopkins Berman Institute of Bioethics, with joint appointment in the Johns Hopkins Bloomberg School of Public Health. With an active practice in primary care internal medicine at Johns Hopkins, Dr. Berger focuses his clinical, educational, and research work, as well as his widely read publications for the lay public, on the ways in which shared decision making in the doctor-patient encounter might be in conflict with medical evidence and the political, social, and psychological realities of the patient.

Dr. Berger teaches residents in their internal medicine clinic and medical students on the wards at Johns Hopkins Hospital, and is part of a Berman faculty team which teaches bioethics to residents in a number of Johns Hopkins specialty programs. He is also staff physician at the Esperanza Clinic Health Center, a free clinic serving undocumented Spanish-speaking immigrants.

Dr. Berger is the author of two books for the lay public on doctor-patient communication and on patient preference in the context of medical evidence.

Jeremy Sugarman, MD, MPH, MA

He was the founding director of the Trent Center for Bioethics, Humanities and History of Medicine at Duke University where he was also a professor of medicine and philosophy. He was appointed as an Academic Icon at the University of Malaya and is a faculty affiliate of the Kennedy Institute of Ethics at Georgetown University.

Dr. Sugarman was the longstanding chair of the Ethics Working Group of the HIV Prevention Trials Network. He is currently a member of the Scientific and Research Advisory Board for the Canadian Blood Service and the Ethics and Public Policy Committees of the International Society for Stem Cell Research. He co-leads the Ethics and Regulatory Core of the NIH Health Care Systems Research Collaboratory and is co-chair of the Johns Hopkins’ Institutional Stem Cell Research Oversight Committee.

Dr. Sugarman has been elected as a member of the American Society of Clinical Investigation, Association of American Physicians, and the National Academy of Medicine (formerly the Institute of Medicine). He is a fellow of the American Association for the Advancement of Science, the American College of Physicians and the Hastings Center. He also received a Doctor of Science, honoris causa, from New York Medical College.