PHASES (Pregnancy & HIV/AIDS: Seeking Equitable Study)
PREVENT (Pregnancy Research Ethics for Vaccines, Epidemics, and New Technologies)
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.
Michelle Huckaby Lewis, MD, JD
Dr. Lewis received a BA degree in English and History from Stanford University before earning her JD degree from Vanderbilt University School of Law. After law school, she worked on Capitol Hill as a Legislative Assistant for Congressman Bob Clement from Tennessee. While working on Capitol Hill, she was appointed to the White Task Force on Health Care Reform during the Clinton Administration. She served on work groups related to Health Insurance Reform and Medical Malpractice Reform. Dr. Lewis then attended Tulane University School of Medicine and received her MD degree. She completed a residency in Pediatrics at the David Geffen School of Medicine at UCLA. She completed the Robert Wood Johnson Clinical Scholars Program at Johns Hopkins University and the Greenwall Fellowship Program in Bioethics and Health Policy at Johns Hopkins University and Georgetown University.
Leslie Meltzer Henry, JD, PhD
Professor Henry provides expert commentary for federal and local agencies, organizations, and the media. She has served as a bioethics consultant to the Department of Defense and has presented before panels of the Department of Health and Human Services, the Food and Drug Administration (FDA), and the National Institutes of Health Bioethics Advisory Committee. Professor Henry has provided written commentary for the Mid-Atlantic Ethics Committee Network, and she has been quoted in media outlets including the Atlantic, the Wall Street Journal, CNN, ABC, NPR, the Chronicle of Higher Education, Forbes, and the Baltimore Sun.
Professor Henry is a co-investigator on a project focused on addressing the ethical and legal challenges of conducting research with pregnant women during public health emergencies, like the Zika crisis, where there is an urgent need to attend to the health needs of pregnant women and their offspring. She is also a member of PHASES, a research team aiming to develop ethically and legally acceptable strategies for conducting research about HIV treatment and prevention during pregnancy.
Prior to joining the faculty, Professor Henry completed a post-doctoral fellowship in bioethics and health policy at Johns Hopkins School of Public Health and Georgetown Law Center, clerked for the Honorable Judith Rogers of the U.S. Court of Appeals for the District of Columbia Circuit, was a fellow in the National Institutes of Health’s Office of Human Subjects Research, and was founder and Editor-in-Chief of the Yale Journal of Health Policy, Law, and Ethics.
Mark T. Hughes, MD, MA
In addition to his work in ethics, Dr. Hughes is co-developer and associate editor of the Internet Learning Center, an Internet-based curriculum utilized by medical residency programs across the nation. From 2005 to 2009, he was a facilitator in the course Curriculum Development in the Longitudinal Johns Hopkins Bayview Faculty Development Program, and he is co-editor of the book “Curriculum Development for Medical Education,” now in its third edition. Dr. Hughes previously served as a core faculty member in the Florence R. Sabin College in the School of Medicine. He has been an associate editor for the Journal of General Internal Medicine and was coordinator of the End-of-Life Interest Group for the Society of General Internal Medicine..
Alan Regenberg, MBE
Alan is also engaged in a broad range of research projects and programs, including the Berman Institute’s science programs: the Stem Cell Policy and Ethics (SCOPE) Program; the Program in Ethics and Brain Sciences (PEBS-Neuroethics); and the Hinxton Group, an international consortium on stem cells, ethics and law; and the eSchool+ Initiative. Recent research has focused on using deliberative democracy tools to engage with communities about their values for allocating scarce medical resources like ventilators in disasters like pandemics. Additional recent work has focused on ethical challenges related to gene editing, stem cell research, social media, public engagement, vaccines, and neuroethics. (Publications)
Joseph Ali, JD
Yoram Unguru, MD, MS, MA
Full Bio
Dr. Unguru is a pediatric hematologist/oncologist with joint faculty appointments at The Herman and Walter Samuelson Children’s Hospital at Sinai and The John Hopkins Berman Institute of Bioethics, where he is a Core Faculty member. He is also Associate Professor in the School of Medicine, Johns Hopkins University. His B.A. in historical studies and M.A. with a concentration in the history of medicine and medical ethics were granted at the University of Maryland, Baltimore County. Dr. Unguru also received a Master of Science (valedictorian) in interdisciplinary studies in biological and physical science at Touro College / Barry Z. Levine School of Health Sciences. He earned his M.D. (valedictorian) at the Technion – Israel Institute of Technology / Bruce Rappaport Faculty of Medicine. He completed his pediatric residency at the Children’s Hospital at Sinai and his pediatric hematology/oncology fellowship at Children’s National Medical Center in Washington DC. Dr. Unguru was a postdoctoral Greenwall Fellow in Bioethics and Public Policy at Johns Hopkins University. Dr. Unguru is board certified both in pediatrics and in pediatric hematology/oncology.
Dr. Unguru’s research interests include clinical and research ethics. His scholarship and publications have focused on the role of children and providers in facilitating shared decision-making, end-of-life decision-making, allocation of scarce lifesaving medications, and ethics education. Dr. Unguru has served as a consultant to the American Academy of Pediatrics Committee on Pediatric Research, the American Medical Association Council on Ethical and Judicial Affairs, the Food Drug and Administration, and the US Senate Committee on Homeland Security and Governmental Affairs. He is on the Editorial Board of Pediatric Ethicscope and serves as a peer reviewer for leading academic medical journals. Dr. Unguru is Chair of the Children’s Oncology Group, Bioethics Steering Committee and past member of the American Society of Clinical Oncology, Ethics Committee.
Dr. Unguru is the Chairman of the Ethics Committee at Sinai Hospital of Baltimore where he implemented and directs a clinical ethics curriculum for the pediatric house staff at The Herman and Walter Samuelson Children’s Hospital at Sinai. He is past recipient of “Teacher of the Year” as chosen by the pediatric house staff at The Herman and Walter Samuelson Children’s Hospital.
Dr. Unguru leads a multidisciplinary, transnational working group examining the ethical and policy implications of chemotherapy shortages in childhood cancer and is a member of the Maryland health system consortium tasked with operationalizing scarce resource allocation processes for public health catastrophes, including the COVID-19 pandemic.
Select Media Appearances
- New York Times, “Drug Shortages Forcing Hard Decisions on Rationing Treatments” (Jan. 29, 2016)
- NPR’s Diane Rehm Show, “Shortages of Children’s Cancer Drugs and How to Allocate Them” (Feb. 1, 2016)
- MSNBC, “Colorado governor signs nation’s first ‘Right to Try’ law” (May 18, 2014)
Nancy E. Kass, ScD
Dr. Kass is coeditor (with Ruth Faden) of HIV, AIDS and Childbearing: Public Policy, Private Lives (Oxford University Press, 1996).
She has served as consultant to the President’s Advisory Committee on Human Radiation Experiments, to the National Bioethics Advisory Commission, and to the National Academy of Sciences. Dr. Kass currently serves as the Chair of the NIH Precision Medicine Initiative Central IRB; she previously co-chaired the National Cancer Institute (NCI) Committee to develop Recommendations for Informed Consent Documents for Cancer Clinical Trials and served on the NCI’s central IRB. Current research projects examine improving informed consent in human research, ethical guidance development for Ebola and other infectious outbreaks, and ethics and learning health care. Dr. Kass teaches the Bloomberg School of Public Health’s course on U.S. and International Research Ethics and Integrity, she served as the director of the School’s PhD program in bioethics and health policy from its inception until 2016, and she has directed (with Adnan Hyder) the Johns Hopkins Fogarty African Bioethics Training Program since its inception in 2000. Dr. Kass is an elected member of the Institute of Medicine (now National Academy of Medicine) and an elected Fellow of the Hastings Center.
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.