Joseph Fins

A 47-year-old woman with a history of anxiety disorder is admitted to the hospital for shortness of breath. On the third day of hospitalization, she asks her physician for a copy of all documents pertaining to her care. What expectation should she have for full disclosure? Are there limits on her access to her medical records and do her physician's concerns about professional privilege matter?The virtues of transparency in medicine have been well described. As proponents of transparency, we favor patient access to their medical records, but we are increasingly troubled by the ease and extent of disclosure in current practice as technology advances and...

Background The globalization of medical science carries for doctors worldwide a correlative duty to deepen their understanding of patients' cultural contexts and religious backgrounds, in order to satisfy each as a unique individual. To become better informed, practitioners may turn to MedLine, but it is unclear whether the information found there is an accurate representation of culture and religion. To test MedLine's representation of this field, we chose the topic of death and dying in the three major monotheistic religions. Methods We searched MedLine using PubMed in order to retrieve and thematically analyze full-length scholarly journal papers or case reports dealing with religious traditions and end-of-life care. Our search consisted of a string of words that included the most common denominations of the three religions, the standard heading terms used by the National Reference Center for Bioethics Literature, and the Medical Subject Headings used by the National Library of Medicine. Eligible articles were limited to English-language papers with an abstract. Results We found that while a bibliographic search in MedLine on this topic produced instant results and some valuable literature, the aggregate reflected a selection bias. American writers were over-represented given the global prevalence of these religious traditions. Denominationally affiliated authors predominated in representing the Christian traditions. The Islamic tradition was under-represented. Conclusion MedLine's capability to identify the most current, reliable and accurate information about purely scientific topics should not be assumed to be the same case when considering the interface of religion, culture and end-of-life care.

Neuroethics, as a domain of inquiry, was made necessary by this interdisciplinary march of technology that has been much documented and the resulting synergism, which resulted in the development of neuroimaging, deep brain stimulation, and advanced neuropharmaceutics. Closing the loop from discovery of basic mechanisms of illness to knowledge of structure and function en route to restorative therapeutics is a long way from earlier efforts to use electrical stimulation to address human maladies. The most challenging aspect about neuroethics is that the technology used by neuroscientists needs to be understood in order to offer responsible neuroethical critique. The technocentricity of neuroscience makes it especially vulnerable to broader market forces and the sway of political economy, all of which might be exacerbated by the recent fiscal melt down and recent trends in healthcare reform. These challenges are illustrated by investigational work exploring the use of deep brain stimulation in the minimally conscious state.

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.

Incapacitated adults with a legally appointed guardian or conservator may be recruited for or involved with medical, behavioral, or social science research. Much of the research in which such persons participate is aimed at evaluating medical interventions for them, or contributing to general knowledge about disorders from which they may suffer. In this paper we will consider how the appointment of guardians for patients with disorders of consciousness —severe brain injuries that affect a patient’s level of arousal and ability to interact —impacts such patients’ access to research.Such persons may be under guardianship because they have lost decisional capacity (i.e., those in a coma or...

Edmund Pellegrino noted that contemporary medicine is to a large extent a North American product, and so too is the ethics that accompanies it. This was an accurate observation back in the 1980s when he said it. Even today bioethics is to a considerable extent informed by the seminal works of the Anglo-American model, at least seen from the United States. The dissemination of ideas from the Spanish-speaking world has been nearly invisible to the English-speaking world of bioethics, isolated by language and culture from intellectual currents abroad