Joseph Fins

The increasing availability of brain data within and outside the biomedical field, combined with the application of artificial intelligence (AI) to brain data analysis, poses a challenge for ethics and governance. We identify distinctive ethical implications of brain data acquisition and processing, and outline a multi-level governance framework. This framework is aimed at maximizing the benefits of facilitated brain data collection and further processing for science and medicine whilst minimizing risks and preventing harmful use. The framework consists of four primary areas of regulatory intervention: binding regulation, ethics and soft law, responsible innovation, and human rights.

Naloxone, which reverses the effects of opioids, was synthesized in 1960, though the hunt for opioid antagonists began a half-century earlier. The history of this quest reveals how cultural and medical attitudes toward opioids have been marked by a polarization of discourse that belies a keen ambivalence. From 1915 to 1960, researchers were stymied in seeking a “pure” antidote to opioids, discovering instead numerous opioid molecules of mixed or paradoxical properties. At the same time, the quest for a dominant explanatory and therapeutic model for addiction was likewise unsettled. After naloxone’s discovery, new dichotomizing language arose in the “War on Drugs,” in increasingly divergent views between addiction medicine and palliative care, and in public debates about layperson naloxone access. Naloxone, one of the emblematic drugs of our time, highlights the ambivalence latent in public and biomedical discussions of opioids as agents of risk and relief.

Der folgende Artikel ist im Jahr 2003 unter dem Titel „Clinical Pragmatism: A Method of Moral Problem Solving“ in dem Sammelband „Pragmatic bioethics“ erschienen, welcher sich mit der Bedeutung der pragmatistischen Philosophie für die Praxis befasst. In dem vom Internisten und Bioethiker Joseph J. Fins, dem Thoraxchirurgen Matthew D. Bacchetta und dem Philosophen und Medizinethiker Franklin G. Miller verfassten Beitrag wird der pragmatistische Ansatz in der klinischen Ethik anhand eines Fallbeispiels gleichzeitig beschrieben, begründet und demonstriert. Obgleich die Denkrichtung der pragmatistischen Philosophie sowohl wissenschaftstheoretisch wie praktisch hoch bedeutsam ist – ohne diese ist weder die heutige sozialwissenschaftliche Forschung noch die angewandte, insbesondere die klinische Ethik denkbar –, werden pragmatistische Ansätze im deutschsprachigen Raum bis heute eher rudimentär rezipiert.

As a member of the New York State Task Force on Life and the Law and the author of Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness, the author draws upon his work as a clinical ethicist during the COVID-19 Spring surge in New York to analyze the impact of ventilator allocation guidelines proposed by the Task Force on people with disorders of consciousness. While a non-discriminatory methodology was intended by the Task Force, the author concludes that the guidelines would have discriminated against people with disorders of consciousness had they been promulgated. This was due to errors in exclusion criteria, the utilization of the Sequential Organ Failure Assessment (SOFA) score, and the Glasgow Coma Scale which assesses motor output and not consciousness. While allocation and triage decisions may be neccessary during a pandemic, the ethical integrity of these determinations depend upon proper metrics.

While COVID-19 has generated a massive burden of illness worldwide, healthcare workers (HCWs) have been disproportionately exposed to SARS-CoV-2 coronavirus infection. During the so-called ‘first wave’, infection rates among this population group have ranged between 10% and 20%, raising as high as one in every four COVID-19 patients in Spain at the peak of the crisis. Now that many countries are already dealing with new waves of COVID-19 cases, a potential competition between HCW and non-HCW patients for scarce resources can still be a likely clinical scenario. In this paper, we address the question of whether HCW who become ill with COVID-19 should be prioritised in diagnostic, treatment or resource allocation protocols. We will evaluate some of the proposed arguments both in favour and against the prioritisation of HCW and also consider which clinical circumstances might warrant prioritising HCW and why could it be ethically appropriate to do so. We conclude that prioritising HCW’s access to protective equipment, diagnostic tests or even prophylactic or therapeutic drug regimes and vaccines might be ethically defensible. However, prioritising HCWs to receive intensive care unit (ICU) beds or ventilators is a much more nuanced decision, in which arguments such as instrumental value or reciprocity might not be enough, and economic and systemic values will need to be considered.

Cultural historians and historians of medicine are a rarity in bioethics. Even those who write histories of bioethics are philosophers, sociologists, or theologians. Where have all the historians gone? If bioethics is to contribute to the urgent work of addressing social justice, structural racism, and health inequity, we bioethicists need to embrace history as a fully constituent part of our field. Historians can help us apprehend the ideas that shaped bioethics, and health policy more broadly, and discover the dissenting arguments that might inspire us now. Given our annus horribilis, history has become an instrumental necessity. It is only through the study of history that we can understand the past so as to reimagine how bioethics can influence health policy and work toward health equity.

Multiple studies have been performed to identify the most common ethical dilemmas encountered by ethics consultation services. However, limited data exists comparing the content of ethics consultations requested by specific hospital specialties. It remains unclear whether the scope of ethical dilemmas prompting an ethics consultation differ between specialties and if there are types of ethics consultations that are more or less frequently called based on the specialty initiating the ethics consult. This study retrospectively assessed the incidence and content of ethics consultations called by surgical vs. non-surgical specialties between January 1, 2013 to December 31, 2018 using our RedCap Database and information collected through the EMR via our Clinical and Translational Science Center. 548 total ethics consultations were analyzed. Our results demonstrate that more surgical consults originated from the ICU, as opposed to lower acuity units, and surgical patients were more likely to have a DNR in place. Surgical specialties were more likely to call about issues relating to withholding/withdrawing life-sustaining treatment, while non-surgical specialties were more likely to call about issues related to discharge planning. There appear to be morally relevant differences between consults classified as the “same” that are not entirely captured by the usual ethics consultations classification system. In conclusion, this study highlights the unique ethical issues experienced by surgical vs. non-surgical specialties. Ultimately, our data can help ethics consultation services determine how best to educate various hospital specialties to approach ethical issues commonly experienced within their field.

Provision of adequate nutrition to elderly patients who develop dysphagia after a stroke can be quite challenging, often leading to the placement of a percutaneous entero‐gastrostomy (PEG) tube for nutritional support. This hypothetical case describes the additional challenge of cross‐cultural belief that leads a daughter to provide oral feeding to her mother, an act that the medical team believes is dangerous and the daughter sees as salubrious. In this case, what is the proper balance between patient safety and deference to cultural traditions and norms? Where are the limits? Two commentaries offer insights for conflict resolution, including recommending that the medical team seek to understand the cultural motivations of the family, balancing safety and respect for cultural norms. The second commentary also disagrees with the team's presumption that the daughter's feeding of her mother is a greater threat to the patient than the PEG tube feeding is.

Neurosurgery for psychiatric disorders, also sometimes referred to as psychosurgery, is rapidly evolving, with new techniques and indications being investigated actively. Many within the field have suggested that some form of guidelines or regulations are needed to help ensure that a promising field develops safely. Multiple countries have enacted specific laws regulating NPD. This article reviews NPD-specific laws drawn from North and South America, Asia and Europe, in order to identify the typical form and contents of these laws and to set the groundwork for the design of an optimal regulation for the field. Key challenges for this design that are revealed by the review are how to define the scope of the law, what types of regulations are required, and how to approach international harmonization given the potential migration of researchers and patients.

In this essay, the author reflects on his development as a physician by recounting two patient narratives of patients he cared for as a third year medical student. In the process of telling these stories of sickness, the author also provides a window on medical practice in the 1980’s in an academic medicine center and how practices have changed. Decades before what has been dubbed “narrative medicine,” the author learned the power of words to shape relationships and promote professional formation.

When confronted by the novel ethical challenges posed by a pandemic, it is helpful to turn to history for guidance and direction. In this essay, the author revisits Thucydides's description of the Plague of Athens from The Peloponnesian War as he considers the New York State Task Force on Life and the Law's 2015 guidelines on ventilator allocation. Confronted by the exigencies of the Covid‐19 surge that struck New York, he questions the task force's decision not to give any degree of preference to health care workers who might become ill. He posits that they are due a compensatory ethic and some deference given the risks they have assumed, often with inadequate protective gear. Reflecting on his ambivalence, he asks if his change of heart reflects the impact of experiential learning or the erosion of nomos—or governing norms—described by Thucydides when the plague struck Athens.

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of patient rights versus clinical discretion, warning about the risk of resurgent physician paternalism dressed up in the guise of a public health crisis.

On January 5, 2019, the Associated Press reported that a woman thought to have been in the vegetative state for over a decade gave birth at a Hacienda HealthCare facility. Until she delivered, the staff at the Phoenix center had not noticed that their patient was pregnant. The patient was also misdiagnosed.Misdiagnosis of patients with disorders of consciousness in institutional settings is more the norm than the exception. Misdiagnosis is also connected to a broad and extremely significant change in the understanding of the vegetative state—a change that the field of bioethics has not yet fully taken into account. In September 2018, the American Academy of Neurology, the American College of Rehabilitation Medicine, and the National Institute on Disability, Independent Living, and Rehabilitation Research issued a comprehensive evidence‐based review on disorders of consciousness and an associated practice guideline on the care of these patients. These landmark publications update the 1994 Multi‐Society Task Force Report on the Vegetative State, which subcategorized the persistent vegetative state as either persistent (once the vegetative state lasted one month) or permanent (once the vegetative state lasted three months after anoxic injury or twelve months after traumatic injury). Noting that 20 percent of patients thought to be permanently unconscious might regain some level of consciousness, the new guideline has eliminated the permanent vegetative state as a diagnostic category, replacing it with the chronic vegetative state.

Abstract:This paper, presented as the 2019 Cambridge Quarterly Neuroethics NetworkCharcot Lecture, traces the nosology of disorders of consciousness in light of 2018 practice guidelines promulgated by the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research. By exploring the ancient origins of Jennett and Plum’s persistent vegetative state and subsequent refinements in the classification of disorders of consciousness—epitomized by the minimally conscious state, cognitive motor dissociation, and the recently described chronic vegetative state—the author argues that there is a counter-narrative to the one linking these conditions to the right to die. Instead, there is a more nuanced schema distinguishing futility from utility, informed by technical advances now able to identify covert consciousness contemplated by Jennett and Plum. Their prescience foreshadows recent developments in the disorders of consciousness literature yielding a layered legacy with implications for society’s normative and legal obligations to these patients.

Dissecting Bioethics, edited by Tuija Takala and Matti Hayry, welcomes contributions on the conceptual and theoretical dimensions of bioethics. The department is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison people’s actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are particularly appreciated. To submit a paper or to discuss a suitable topic, contact Tuija Takala [email protected].:This article examines some of the assumptions and implications associated with the Belmont era context in which the concept of therapeutic misconception was forged. We argue that the justification of therapeutic misconception should be reconsidered based on less paternalistic and more participatory models of research. Finally, we identify conceptual and practical approaches that might better reflect contemporary research practice.

Undocumented and undomiciled, Gustavo Jiménez had been in the United States for several years. He knew his leg wasn’t right when it began to swell and redden. After the cellulitis spread to his bloodstream, he was found unconscious on the street and admitted to the intensive care unit. He improved quickly and was soon able to tell a social worker his name and that he had family in Quito. Then his health took a turn for the worse, and he developed multisystem organ failure. His doctors believed his prognosis grave and further care futile. They wanted to invoke a provision under their state’s law that allows, at the discretion of at least two physicians, for the withdrawal of life‐sustaining therapy for isolated and decisionally incapacitated patients, but the social worker had ethical concerns about the doctors’ desire to make such a momentous decision without family input. She asked for a “time‐out to locate his family,” but one of the doctors asserted, “His family isn’t here, and you’ll never find them. Besides we need the bed. The ER is full of patients we can help.” What is owed a patient and family in such a situation?

Sometimes one’s greatest academic disappointments can have unexpected outcomes. This is especially true when one is trying to change career trajectories or do something that others did not take seriously. My path into neuroethics was an unexpected journey catalyzed in part by constructive disappointment and the disbelief of colleagues who thought that the work I was pursuing nearly two decades prior was a fool’s errand. After all, could anyone—in his or her right mind—ever conceive of waking up a person unconscious from brain injury and getting him to speak?1.