Johns Hopkins bioethicists lead a call to reform the ethical foundation of the changing American healthcare system, with new ethical obligations on providers, administrators and patients.
Experts from across disciplines at Johns Hopkins will hold a symposium on Thursday, April 11, 2013 to discuss changes to medical ethics paradigms as proposed by their own bioethics colleagues in a recent, groundbreaking publication.
“The labels ‘research’ and ‘practice’ are poor proxies for what should be our central moral concerns, and they no longer serve the purpose they did three or four decades ago,” wrote an interdisciplinary team led by Johns Hopkins bioethicists in a Hastings Center Report special report earlier this year, “Ethical Oversight of Learning Healthcare Systems.” Current guidelines and policy for oversight of research with human subjects were drafted by a national commission in the 1970s, in response to public outcry over questionable research, including the now-infamous Tuskegee Syphilis Study.
Ruth R. Faden, director of the Johns Hopkins Berman Institute of Bioethics, and Nancy E. Kass, the Berman Institute’s deputy director for public health, will present their new ethical concept to colleagues in an effort to foster internal dialogue on the ethical foundation of a ‘learning healthcare system,’ as defined by the Institute of Medicine.
“Our framework challenges previous thinking in research and clinical ethics by calling for an ethical obligation on the part of clinicians, administrators, payors and purchasers to conduct research to improve health care quality and value, and on patients to contribute to such research,” says Faden.
“Far too often, doctors do their best but simply don’t have the information to tell them which approaches or treatments work best, and patients are suffering for that lack of knowledge,” says Kass. Her and Faden’s presentations at the symposium will be followed by a panel discussion with Daniel Ford, Vice Dean for Clinical Investigation in the Johns Hopkins School of Medicine; Jodi Segal, co-director of the Center for Drug Safety and Effectiveness at the Johns Hopkins Bloomberg School of Public Health; Peter Terry, professor of medicine; and Elliott R. Haut, associate professor of surgery.
“We’re finding that patients are both under-protected from risks in medical treatment and over-protected from low-risk quality-improvement research, bringing progress to a dangerous stalemate that is costing lives,” Kass and Faden’s team wrote in the Hastings Center Report.
The ethics symposium is presented jointly by the Institute for Clinical and Translational Research (ICTR), the Johns Hopkins Berman Institute of Bioethics and The Center for Health Services and Outcomes Research (CHSOR). It will be held on the Johns Hopkins East Baltimore medical campus, from 8:00-10:00 AM on Thursday, April 11, 2013. To attend please contact Leah Ramsay at Lramsay@jhu.edu.
Special Report: “Ethical Oversight of Learning Health Care Systems” Hastings Center Report 43, no. 1 (2013): S1-S44.
Johns Hopkins Berman Institute of Bioethics
Media Contact: Leah Ramsay