FOR IMMEDIATE RELEASE
CONTACT: Jamie Smith, Berman Institute of Bioethics
Office: 410-614-5381 / Cell: 410-245-1106
Dr. Alexander Levi, a trustee emeritus of Johns Hopkins University and chair of the Berman Institute of Bioethics’ national advisory board, and his wife Vicki have made a gift of $15 million to support the education and training of future leaders in the field of bioethics. Dr. Levi, a clinical psychologist based in New York, is a longtime supporter of the Berman Institute and has previously supported post-doctoral bioethicists through the Hecht-Levi Fellowship Program.
“This remarkable gift, one of the largest ever made to any bioethics program, will both enable the Berman Institute to attract and support the most promising students and fellows in the United States and from around the world and honor our founding director, Ruth Faden,” said Jeffrey Kahn, Andreas C. Dracopoulos Director of the Johns Hopkins Berman Institute of Bioethics. “The Levi family’s generosity will dramatically expand our capacity to prepare leaders who will take on the most pressing and morally challenging bioethics issues of the day, and who will work to effect change when and where it is most needed.”
The gift will establish the Ruth R. Faden Endowment for Education in Bioethics. Named in honor of the Berman Institute’s founding director, the endowment will provide ongoing permanent support to fully fund the Hecht-Levi Postdoctoral Fellowship Program, offer tuition support for students in the Berman Institute’s Master of Bioethics program, research and conference travel support for students in the doctoral track in Health Policy and Ethics, and support leadership and training for selected highly qualified fellows and students through the Ruth Faden Scholars Program. Ruth Faden Scholars will receive leadership development training and other opportunities over the course of their participation in the program.
“No words could adequately express what Alex and Vicki’s decision to name this extraordinary endowment in my honor means. As they know, nothing is dearer to my professional heart than the training of future generations,” said Dr. Faden. “The Levis’ incredibly generous gift ensures that the Berman Institute will be able to continue to educate, in perpetuity, our field’s future leaders. I cannot imagine a more farsighted contribution, not only to our institution, but to bioethics and to what bioethics can contribute to the world.”
The gift continues the long legacy of substantial support that the Hecht-Levi family has provided Johns Hopkins University for more than half a century.
“I’ve been involved with the Berman Institute for a long time, and I feel like it’s given back more to me than I could ever give to it. Vicki and I wanted to find a way to honor Ruth’s lifetime of service, to creating the Berman Institute, to bioethics at Hopkins, and to the field,” said Dr. Levi. “This gift will create new leaders who will change the world in ways we can’t yet foresee.”
One of the largest bioethics centers in the world, the Berman Institute is Johns Hopkins University’s home for collaborative scholarship and teaching on the ethics of clinical practice, public health, and biomedical science. Since 1995, the Institute has worked with governmental agencies, nongovernmental and private sector organizations to address and resolve ethical issues. Its 35 faculty members are drawn from the Johns Hopkins School of Medicine, School of Nursing, Bloomberg School of Public Health, Paul H. Nitze School of Advanced International Studies, and the Krieger School of Arts and Sciences. In partnership with the Bloomberg School of Public Health, the Berman Institute leads one of the nation’s premier PhD programs in Bioethics and Health Policy in addition to its newly created Master of Bioethics graduate program.
Citing uncertainties about the risks and benefits of an experimental therapy for fetuses whose kidneys do not develop, bioethicists at Johns Hopkins and a team of medical experts are calling for rigorous clinical trials in the use of a potential treatment, known as amnioinfusion.
The article, published ahead of print in Obstetrics & Gynecology, calls for a better look at the ethical issues related to this novel intervention, which was driven by a well-publicized birth from 2012; the child is still alive. The authors, who include those among all relevant disciplines, have identified 10 key categories of ethical issues relevant to this novel intervention: potential risks and benefits, clinical care compared with innovation compared with research, counseling of expectant parents, consent, outcome measures, access and justice, conflicts of interest, effects on clinicians, effects on institutions and long-term societal implications.
Bilateral renal agenesis occurs in 2.88 per 10,000 live births. This means that about 1,100 pregnancies are affected by this condition annually in the United States. The condition has been considered uniformly fatal because, without functioning kidneys, the fetus’ lungs also do not fully develop. However, serial prenatal amnioinfusions might be able to overcome problems with lung development. The treatment consists of infusing saline solution into the amniotic sac to allow the lungs to develop. The idea is to support the fetus so that, after birth, the baby can undergo dialysis and ultimately kidney transplantation.
Yet, these infusions may also pose risks to the mother and may cause premature birth. Since this intervention is still experimental, careful research must be done to assess the safety and efficacy of the procedure. Additionally, families must receive proper counseling on their options. Those faced with the diagnosis of bilateral renal agenesis also have pregnancy termination and expectant management with palliative care, as well as experimental interventions, to consider.
“It is important that expectant parents considering an intervention do so by enrolling in a formal clinical trial,” says Jeremy Sugarman, Harvey M. Meyerhoff Professor of Bioethics and Medicine at the Johns Hopkins University School of Medicine and the deputy director for medicine of the Berman Institute of Bioethics at The Johns Hopkins University. “This way the decisions and experiences of the families, patients and physicians can be captured so we can find out if the intervention is safe and effective.”
The bottom line, says Sugarman, is the need for long-term multicenter research involving those who choose serial amnioinfusions and those who do not, so that physicians can properly inform and counsel families about treatment options and likely outcomes for their fetuses.
Sugarman, Jeremy MD, MPH; Anderson, Jean MD; Baschat, Ahmet A. MD; Herrera Beutler, Jaime BA; Bienstock, Jessica L. MD, MPH; Bunchman, Timothy E. MD; Desai, Niraj M. MD; Gates, Elena MD; Goldberg, Aviva MD, MA; Grimm, Paul C. MD; Henry, Leslie Meltzer JD, PhD; Jelin, Eric B. MD; Johnson, Emily MSN, RN; Hertenstein, Christine B. MGC; Mastroianni, Anna C. JD, MPH; Mercurio, Mark R. MD, MA; Neu, Alicia MD; Nogee, Lawrence M. MD; Polzin, William J. MD; Ralston, Steven J. MD, MPH; Ramus, Ronald M. MD; Singleton, Megan Kasimatis JD, MBE; Somers, Michael J. G. MD; Wang, Karen C. MD; Boss, Renee MD, MHS. Ethical Considerations Concerning Amnioinfusions for Treating Fetal Bilateral Renal Agenesis. December 4, 2017; Published Online Ahead of Print