Topic: Research Ethics

JHU Collaborates with Addis Ababa University to Launch Research Ethics Master’s Program

In January 2023, faculty and staff of the Johns Hopkins University-Addis Ababa University Research Ethics Training Program (JHU-AAU RETP) gathered in Addis Ababa, Ethiopia, for a symposium and launch of the Research Ethics Specialty Track within the AAU Master of Public Health (MPH) program.

Over the past three years – with support from the U.S. National Institutes of Health, Fogarty International Center (Grant # R25TW001604) and the leadership of Dr. Adamu Addissie (AAU) – the JHU-AAU RETP has focused its efforts on curriculum development and approvals; strengthening capacity of AAU faculty to teach new courses in bioethics through training and mentorship; raising awareness for bioethics and research ethics through outreach, public seminars and creation of a MPH-wide Responsible Conduct of Research (RCR) course; engaging government leaders in Ethiopia to support ongoing efforts to advance research ethics networks and policies; and piloting of the new MPH Specialty Track.

“We are delighted to have this opportunity to work together to generate the first bioethics-related Master’s training program in Ethiopia,” said Joseph Ali, faculty of the JHU Berman Institute and Bloomberg School of Public Health and co-director of the JHU-AAU RETP. “The success of the program depends greatly on the vision and support of key leaders at AAU and Nationally, and the dedication of AAU and JHU faculty and staff. We are thankful for the support and commitments.”

The official program launch in January celebrated these formative efforts, shared emerging needs and opportunities for bioethics in Ethiopia and the region, and recognized the matriculation of a cohort of nine students into the Master’s program.  The event, which was attended by over 60 people, was chaired by Prof. Yeweyenhareg Feleke and included speeches from distinguished guests of the Ethiopian Ministry of Education, AAU administration, and a keynote delivered by Dr. Paulina Tindana (University of Ghana; Accra, Ghana). A panel that included guest speakers Dr. Erisa Mwaka (Makerere University College of Health Sciences; Kampala, Uganda), Dr. Violet Naanyu (Moi University; Eldoret, Kenya), Dr. Yimtubezinash Woldeamanuel (AAU; Addis Ababa, Ethiopia) and Dr. Telahun Teka (National Research Ethics Board; Addis Ababa, Ethiopia) was also organized to share reflections on the future of research ethics in Africa. This was followed by a presentation by Joseph Ali on global efforts to establish mechanisms for benchmarking ethics oversight of health-related research. In the days following, students had the opportunity to begin to share their hopes for their Master’s training and receive feedback from the program and invited guests on early thesis research concepts. Information about local and global bioethics networks and resources were also shared.

In addition to the symposium and meetings with students, the team met with AAU program faculty for a curriculum workshop, and hosted a meeting – chaired by Dr. Andrea Ruff (JHU Bloomberg School of Public Health) – which gathered Institutional Review Board (IRB) leaders from across Addis Ababa for a discussion on IRB capacity strengthening and networking.

While the COVID-19 pandemic has challenged international collaborative training programs, through creative adaptations, personal commitments and supportive institutions, the JHU-AAU-RETP has established a foundation for what it hopes will be decades of successful bioethics training to advance high quality research and practice.  On the final evening, while the team gathered for dinner, Dr. Tindana offered the well-known proverb: “If you want to go fast, go alone. If you want to go far, go together.”

Events throughout the week were coordinated by Lealem Wagaw (AAU) and Elise Wilson (JHU). For more information about the JHU-AAU RETP, please contact adamuaddissie@gmail.com or jali@jhu.edu.

Cynda Rushton Named to Nurse Researcher Hall of Fame

Berman Institute faculty member Cynda Rushton has been selected for induction into the Sigma Theta Tau International Honor Society of Nursing (Sigma) 2019 International Nurse Researcher Hall of Fame. Professor Rushton was chosen for significant contributions to the nursing profession and her sustained research efforts to improve the care and health of people, specifically in the areas of aging and nursing ethics.

As Anne and George L. Bunting Professor of Clinical Ethics at the Berman Institute and the Johns Hopkins School of Nursing, Rushton, PhD, RN, FAAN, focuses on moral suffering and resilience of clinicians, and designing cultures of ethical practice. In 2014, she co-led the first-ever National Nursing Ethics Summit to prepare a blueprint for nursing ethics in the 21st century, and in 2016, an initiative to help nurses transform morally distressing experiences into moral resiliency.

Her most recent work has been designing, implementing, and evaluating the Mindful Ethical Practice and Resilience Academy (MEPRA) to train nurses challenged with patient suffering, resource allocation, and other ethical situations to respond with integrity. She is author and editor of a new book Moral Resilience: Transforming Moral Suffering in Healthcare (Oxford University Press).

“Ethical practice is the bedrock of nursing, and we are at a pivotal junction in health care that demands that we reorient toward our moral compass,” says Rushton. “My work has been supported by so many peers and mentors along the way, which has helped make this honor a reality. I am humbled and grateful to have been selected as part of this distinguished group of nurses.”

Rushton will be inducted at Sigma’s 30th International Nursing Research Congress in Canada, July 2019.

A version of this article was first published by the JHSON.

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..