Keynote Lecture "The Ethicality of Storytelling: Privacy, Confidentiality, and “Ownership” of Patients‘ Stories"
The lecture takes place online on July 21st 16:00-18:00 (German time)
Abstract
Creative, cognitive, and psychological currents in private and public lives have been overtaken by stories. Astute, grandiose, or tawdry, storytelling has reinvented our daily lives. Persons seeking health care recount their experiences of illness to clinicians in what are supposed to be confidential interchanges. Some clinicians listen only for diagnostic clues of disease. Others are moved by the stories they hear from patients, either because they have been well trained to attend to their patient’s experiences or because they recognize a story worth publishing themselves.
Clinicians may consider publishing patients’ stories as a professional duty to illuminate suffering and advocate for better care. Some aim to become writers. Others are feeding their cv. Some but not all clinician-writers seek and obtain consent from patients to write about them. Some but not all journals require written consent from patients to publish these stories. Clinicians have been sued for libel for publishing about patients without consent.
The keynote lecture will examine confounding and competing interests surrounding patients’ privacy, exposing fundamental schisms between clinician and patient perspectives. Deep questions surface about professional power, the duty to do no harm, and the very nature of story as a pluripotent apeirogon.
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Rita Charon is a general internist and literary scholar who originated the field of narrative medicine. She is Professor and Founding Chair of the Department of Medical Humanities and Ethics and Professor of Medicine at Columbia University. She completed the MD at Harvard in 1978 and the PhD in English at Columbia in 1999, concentrating on narratology and the works of Henry James. Her research focuses on the consequences of narrative medicine practice, narrative medicine pedagogy, and health care team effectiveness. She has lectured and served as Visiting Professor at many medical schools and universities in the US and abroad, teaching narrative medicine theory and practice. She has received a Guggenheim Fellowship, a Rockefeller Foundation Bellagio residency, and research funding from the NIH, the NEH, the American Board of Internal Medicine, the Josiah Macy Jr. Foundation, and several additional private foundations. She was chosen by the National Endowment for the Humanities to deliver the 2018 Jefferson Lecture, “the highest honor the federal government bestows for distinguished intellectual achievement in the humanities.” Dr. Charon has published in The New England Journal of Medicine, Lancet, JAMA, Annals of Internal Medicine, Narrative, Henry James Review, Poetics Today, The Drama Review, Partial Answers, and Literature and Medicine. She is the author of Narrative Medicine: Honoring the Stories of Illness (Oxford University Press, 2006) and co-author of Principles and Practice of Narrative Medicine (Oxford University Press, 2017). She is co-editor of Stories Matter: The Role of Narrative in Medical Ethics (Routledge, 2002) and Psychoanalysis and Narrative Medicine (SUNY Press, 2008).
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