Joseph Fins

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19.

Long before a clinical ethicist can make recommendations in any given case, they must establish a foundational understanding of the pertinent medical facts informing the ethical dilemma. In this article, we encourage clinical ethicists to employ a practice we term curious engagement to identify and address incomplete and incorrect information that may present itself in the ethics consultation process. We illustrate our methodology by reflecting on a composite case drawn from our own consultative work and highlighting other scenarios in which clinical ethicists may encounter problematic situations. Under the rubric of curious engagement, we provide guidance for how best to navigate false predicates while maintaining sensitivity to patient safety and professional boundaries.

In this article we focus on Nancy Neveloff Dubler’s role on the New York State Task Force on Life and the Law as means to illustrate her public policy contributions as a bioethicist. We review the historical origins of the Task Force, its impact on and contributions to bioethics, and the law. We then make metaobservations about Dubler’s commitment to social justice as a governing principle in her deliberative stance on the Task Force. To that end, we specifically highlight Dubler’s contributions to the Task Force regarding the extension of the Family Health Care Decisions Act, New York’s surrogate decision-making law, to people with disabilities; gestational surrogacy; and the need for crisis standards of care during the COVID-19 pandemic. We maintain that Dubler’s contributions to public bioethics were as significant as her work at the bedside in clinical ethics consultation.

What happens at the end of a clinical trial for an investigational neural implant? It may be surprising to learn how difficult it is to answer this question. While new trials are initiated with increasing regularity, relatively little consensus exists on how best to conduct them, and even less on how to ethically end them. The landscape of recent neural implant trials demonstrates wide variability of what happens to research participants after an neural implant trial ends. Some former research participants continue to receive support for their devices (e.g., battery and component replacements, software updates, etc.). Others, when safe, have their neural implants removed through surgical explantation. Still others continue to live with a deactivated neural implant embedded in their body. In the United States, there are no uniform requirements to provide services, of any kind, after an neural implant study ends, and other nations are similarly facing this challenge. The existence of a post-trial gap in an expanding neural implant research ecosystem invites obvious questions: What is owed to neural implant research participants post-trial, and why has providing it been so difficult to accomplish in practice? To take a step forward on this difficult issue, we assembled one group of stakeholders – researchers funded for neuroethics grants by the National Institutes of Health – to explore possible starting points on one topic: ethical guidance for post-trial care of research participants in neural implant trials. Based on shared concerns discussed in the expert workshop the current paper is a call to action. It reports the key areas of convergence from the meeting and highlights important next steps towards developing much needed guidance.

Clinicians have an obligation to ensure that patients with adequate capacity can make autonomous decisions. Thus, patients who choose to forego treatment and leave hospitals “against medical advice” are typically allowed to do so. But what happens when they require clinicians’ assistance to physically leave? Is it incumbent upon clinicians to not only respect and fulfill patients’ requests with which they disagree, but to physically assist in their fulfillment? We attempt to develop an ethical framework wherein clinicians can honor patients’ wishes without necessarily sacrificing their own moral position.

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.

Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, new methods of identifying and preventing bias, and the adoption of public guidelines for safe and equitable distribution of neurotechnological devices.

Patients from religious minorities can face unique challenges reconciling their beliefs with the values that undergird Western Medical Ethics. This paper explores homologies between approaches of Orthodox Judaism and Islam to medical ethics, and how these religions’ moral codes differ from the prevailing ethos in medicine. Through analysis of religious and biomedical literature, this work examines how Jewish and Muslim religious observances affect decisions about genetic counseling, reproductive health, pediatric medicine, mental health, and end-of-life decisions. These traditions embrace a theocentric rather than an autonomy-based ethics. Central to this conception is the view that life and the body are gifts from God rather than the individual and the primacy of community norms. These insights can help clinicians provide care that aligns Muslim and Jewish patients’ health goals with their religious beliefs and cultural values. Finally, dialogue in a medical context between these faith traditions provides an opportunity for rapprochement amidst geopolitical turmoil.

As improvements in neuroscience have enabled a better understanding of disorders of consciousness as well as methods to treat them, a hurdle that has become all too prevalent is the denial of coverage for treatment and rehabilitation services. In 2011, a settlement emerged from a Vermont District Court case, Jimmo v. Sebelius, which was brought to stop the use of an “improvement standard” that required tangible progress over an identifiable period of time for Medicare coverage of services. While the use of this standard can have deleterious effects on those with many chronic conditions, it is especially burdensome for those in the minimally conscious state, where improvements are unpredictable and often not manifested through repeatable overt behaviors. Though the focus of this paper is on the challenges of brain injury and the minimally conscious state, which an estimated 100,000 to 200,000 individuals suffer from in the United States, the post-Jimmo arguments presented can and should have a broad impact as envisioned by the plaintiffs who brought the case on behalf of multiple advocacy groups representing patients with a range of chronic care conditions.

Patient narratives from two investigational deep brain stimulation trials for traumatic brain injury and obsessive‐compulsive disorder reveal that injury and illness rob individuals of personal identity and that neuromodulation can restore it. The early success of these interventions makes a compelling case for continued post‐trial access to these technologies. Given the centrality of personal identity to respect for persons, a failure to provide continued access can be understood to represent a metaphorical identity theft. Such a loss recapitulates the pain of an individual's initial injury or illness and becomes especially tragic because it could be prevented by robust policy. A failure to fulfill this normative obligation constitutes a breach of disability law, which would view post‐trial access as a means to achieve social reintegration through this neurotechnological accommodation.