Joseph Fins

Bioethics has been an interdisciplinary field since its inception. From the founding of the Hastings Center in 1969 and the Kennedy Institute of Ethics in 1971, scholars from many disciplines have come together to create a field of study strengthened by its interdisciplinarity. In this special issue of Perspectives in Biology and Medicine, we celebrate the interdisciplinary character of bioethics by means of essays by eight distinguished bioethics scholars hailing from backgrounds in philosophy, law, medicine, nursing, public health, history, sociology, and narrative methods. Each contributor offers a personal perspective on their journey into bioethics from a particular disciplinary background...

It is generally agreed that physicians should not provide futile interventions, for the obvious reason that an intervention without utility causes harm without benefit. However, despite efforts to standardize a definition, there is a lack of universal consensus as to what constitutes “futility.” Two recent policy statements object to the terminology of futility based on the lack of a universal definition. Schneiderman, Jecker, and Jonsen object to the proposed alternative terminology of “inappropriate.” These differing opinions about the most apt terminology raise the question of whether definitions are helpful or counterproductive in addressing disputes that...

Autobiographical essays can be an indulgence. Often self-congratulatory and low on self-reflection, they seldom serve a purpose other than to stoke nostalgia. So when given this opportunity to write about my life in medicine and bioethics, I decided I would take stock, and not simply celebrate whatever accomplishments I might have had. Rather, I would use this opportunity to look for themes that linked the decades together. My hope was that the process might assemble the mosaic that has been my life into a discernible pattern that could only be seen from a distance, and from the vantage of historical reflection. Maybe, if I was lucky, past would be prologue, and I would learn something that might help me script the...

Abstract:In the 2015 David Kopf Lecture on Neuroethics of the Society for Neuroscience, Dr. Joseph Fins presents his work on neuroethics and disorders of consciousness through the experience of Maggie and Nancy Worthen, a young woman who sustained a severe brain injury and her mother who cared for her. The central protagonists in his book,Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness(Cambridge University Press, 2015), their experience is emblematic of the challenges faced by families touched by severe brain injury and the possibility for improved diagnosis and treatment offered by progress in neuroscience. By telling their story, and those of other families interviewed as part of the research forRights Come to Mind,Fins calls for improved care for this population arguing that this is both an access to care issue and a civil and disability rights issue worthy of greater societal attention.

A 28-year-old female-to-male transgender patient presents to the emergency room with one day of pleuritic chest pain and shortness of breath. The patient is found to have an acute pulmonary embolus and is admitted is to the academic hospitalist teaching service for further management.The transgender population is diverse in gender identity, expression, and sexual orientation. Although estimates vary, one study suggests that 0.3% of adults identify as transgender. The U.S. National Transgender Discrimination Survey revealed that 28% of transgender adults have experienced harassment in medical settings, 19% reported being refused care, and 28% postponed care because of discrimination...

A thirty-year-old single mother with recurrent, metastatic, treatment-refractory cancer presents to the emergency room with severe difficulty breathing due to an obstructive tumor in her neck, compounded by progressive disease in her lungs and a new pulmonary embolism. She cannot be safely intubated and would require an emergent awake tracheotomy. Even if the airway can be successfully secured surgically, the likelihood that she will be able to be weaned from mechanical ventilation is very low. The surgeon, a young mother too, appreciates the patient's desire for more time with her toddler. But the surgeon knows the significant risk of surgery, the massive responsibility she would accept in trying to get the patient through it, and the emotional toll of an intraoperative death on surgical staff. And she can imagine the second-guessing that will come during the inevitable morbidity and mortality conference if the patient should die in the perioperative window. Yet the surgeon does not want to take the “easy” way out; after all, critically ill patients undergo aggressive resuscitation all the time. What should she do?

Without exaggeration, it could be said that we are entering a golden age of neuroscience. Informed by recent developments in neuroimaging that allow us to peer into the working brain at both a structural and functional level, neuroscientists are beginning to untangle mechanisms of recovery after brain injury and grapple with age-old questions about brain and mind and their correlates neural mechanisms and consciousness. Neuroimaging, coupled with new diagnostic categories and assessment scales are helping us develop a new diagnostic nosology about disorders of consciousness which will likely improve prognostication and suggest therapeutic advances. Historically such diagnostic refinement has yield therapeutic advances in medicine and there is no reason to doubt that this will be the case for disorders of consciousness, perhaps bringing relief to a marginalized population now on the periphery of the therapeutic agenda. In spite of this promise, the translation of research findings into the clinical context will be difficult. As we move from descriptive categories about disorders of consciousness, like the vegetative or minimally conscious states, to ones further specified by integrating behavioral and neuroimaging findings, humility not hubris should be the virtue that guides the ethical conduct of research and practice.