PRESS RELEASE: 08-27-2019 Hastings Center Report, July-August 2019
Bystander Ethics and Good Samaritanism: A Paradox for Learning Health Organizations
James E. Sabin, Noelle M. Cocoros, Crystal J. Garcia, Jennifer C. Goldsack, Kevin Haynes, Nancy D. Lin, Debbe McCall, Vinit Nair, Sean D. Pokorney, Cheryl N. McMahill-Walraven, Christopher B. Granger, and Richard Platt
For years, health care leaders, ethicists, and researchers have urged the creation of learning health organizations that would integrate knowledge from patient-care data to continuously im-prove the quality of care. The authors describe their experience with an ongoing re¬search study that provided insight into one of the challenges that will have to be dealt with in creating these organizations. The oversight team argued that the ethical principle of beneficence did not allow the researchers to be “bystanders” in relation to a control group receiving suboptimal care. In response, the re¬searchers designed a “workaround” that allowed the project to go for¬ward. Specifically, they changed the research protocol so that researchers would never be in the position of knowing whether a patient should be receiving a particular medication but was not. The authors propose that what they call “bystander ethics” will create challenges for the kinds of quality-improvement re¬search that learning health care organizations are designed to do.
Other Voices: Emily A. Largent and Stephanie R. Morain critique the researchers’ workaround, explaining why they find it inadequate.
Homeless, Ill, and Psychiatrically Complex: The Grueling Carousel of Cassandra Lee
Laura Guidry-Grimes
Cassandra Lee had a history of pulling out lines and tubes and a distaste of warming blankets. Her admission to the hospital marked her 30th over the past year. Many of the challenges facing the hospi¬tal caring for her were not unique: significant psychiatric issues, prolonged nonadherence to medical advice, and end-of-life decision-making combined to create an ethically dense and vexing situ¬ation. Lee, like so many patients, was suffering because of system failures. Guidry-Grimes is an assistant professor in the department of medical humanities and bioethics at the University of Arkansas for Medical Sciences.
Policy and Politics–Out of the Freezer and into the Policy Fire: Quandaries in Reproductive Cryopreservation
Rebecca Feinberg
The field of assisted reproduction is advancing rapidly and is ripe for regulation and guidance. In 2018, over 4,000 frozen eggs and embryos were lost to approximately 1,000 patients at Ahuja University Hospital in Cleveland, Ohio, due to an accidental thaw of a cryopreservation tank. A class-action lawsuit has been filed. The precedent that will be set by the case is significant for both past events and future possibilities and is core to the discussion of policy involving the cryopreservation of gametes and embryos. Feinberg is a teaching assistant professor in the College of Science and Health and the College of Law at DePaul University.
Also in this issue:
- Clinical Trial Portfolios: A Critical Oversight in Human Research Ethics, Drug Regulation, and Policy
- When No One Notices: Disorders of Consciousness and the Chronic Vegetative State
- Perspective: The Tyranny of Hope
- In Practice – Patient as Gift
Contact Susan Gilbert, director of communications
The Hastings Center
845-424-4040 x244
gilberts@thehastingscenter.org