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Dr. Joffe's research addresses three areas. First, he studies leadership in biomedical science, including governance within learning healthcare systems and the role of the principal investigator in multicenter trials. Second, he studies the ethical questions raised by genomic sequencing in medicine and science. Finally, he studies the ethics of human subjects research, including informed consent and clinical research design.
Dr. Joffe's research addresses ethical and policy questions in medicine and science. A particular focus of his work is leadership in biomedical research. With funding from the Patient Centered Outcomes Research Institute (PCORI), he is currently studying how learning healthcare systems organize and oversee the quality improvement and research activities that they conduct, as well as how these systems engage patients and families in that oversight. This study involves interviews with senior leaders of learning healthcare systems around the country, along with focus groups of patients who receive their care from those systems. A second study addresses how principal investigators of multicenter clinical trials exercise their leadership responsibility for those trials.
In addition, he is studying the ethical challenges that arise as medicine—especially cancer medicine—integrates genomic sequencing into patient care and research. For example, he is studying the beliefs of research participants about whether and when investigators should offer to share their individual results from genetic research tests with them.
Finally, he writes extensively about the ethics of research involving human participants, including about informed consent, pediatric research, and the questions raised by clinical trial design choices such as the use of randomization and placebos.
Notable achievements include:
- Development and validation of one of the most widely used instruments for measuring participants’ knowledge of their clinical trials, which is one of the most important outcomes of the clinical trials process
- Developing an approach to seeking the assent of children considering participation in cancer clinical trials
- Conducting one of the first systematic studies of the financial relationships between patient advocacy organizations and the biopharmaceutical industry
- Developing a conceptual model of the investigator-participant relationship grounded in the ethics of scientific experimentation rather than in the ethics of clinical medicine
Education and Training
AB, Harvard College (Fine Art), 1988
MD, University of California, San Francisco, 1992
MP, University of California, Berkeley (Epidemiology), 1996
Fellowship, Boston Children's Hospital and Dana-Farber Cancer Institute (Pediatric Hematology/Oncology), 2000
Fellowship, Boston Children's Hospital (Clinical Effectiveness), 2000
Titles and Academic Titles
Professor of Pediatrics
Art and Ilene Penn Professor of Medical Ethics and Health Policy
American Society of Clinical Oncology, 1999-
American Society of Bioethics and Humanities, 2001-
Children's Oncology Group, 2003-
Public Responsibility in Medicine and Research (PRIM&R), 2003-
Society for Pediatric Research, 2007-
American Society for Blood and Marrow Transplantation, 2008-
Center for International Blood and Marrow Transplantation Research, 2009-
American Pediatric Society, 2012-
American Society of Human Genetics, 2014-
Award for Excellence in Human Research Protections, Health Improvement Institute, 2002
Elected Fellow, The Hastings Center, 2013