Ethical Considerations in Dementia Diagnosis and Care: AAN Position Statement.

Alzheimer disease and other dementias present unique practical challenges for patients, their families, clinicians, and health systems. These challenges reflect not only the growing public health effect of dementia in an aging global population, but also more specific ethical complexities including early loss of patients' capacity to make decisions regarding their own care, the stigma often associated with a dementia diagnosis, the difficulty of balancing concern for patients' welfare with respect for patients' remaining independence, and the effect on the physical, emotional, and financial well-being of family caregivers. Caring for patients with dementia requires respecting patient autonomy while acknowledging progressively diminishing decisional capacity and continuing to provide care in accordance with other core ethical principles (beneficence, justice, and nonmaleficence). Whereas these ethical principles remain unchanged, neurologists must reconsider how to apply them given changes across multiple domains including our understanding of disease, clinical and legal tools for addressing manifestations of illness, our expanding awareness of the crucial role of family caregivers in providing care and maintaining patient quality of life, and societal conceptions of dementia and individuals' personal expectations for aging. This revision to the American Academy of Neurology's 1996 position statement summarizes ethical considerations that often arise in caring for patients with dementia; although it addresses how such considerations influence patient management, it is not a clinical practice guideline.

The neuroethics of disorders of consciousness: a brief history of evolving ideas.

Neuroethical questions raised by recent advances in the diagnosis and treatment of disorders of consciousness are rapidly expanding, increasingly relevant and yet underexplored. The aim of this thematic review is to provide a clinically applicable framework for understanding the current taxonomy of disorders of consciousness and to propose an approach to identifying and critically evaluating actionable neuroethical issues that are frequently encountered in research and clinical care for this vulnerable population. Increased awareness of these issues and clarity about opportunities for optimizing ethically responsible care in this domain are especially timely given recent surges in critically ill patients with prolonged disorders of consciousness associated with coronavirus disease 2019 around the world. We begin with an overview of the field of neuroethics: what it is, its history and evolution in the context of biomedical ethics at large. We then explore nomenclature used in disorders of consciousness, covering categories proposed by the American Academy of Neurology, the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research, including definitions of terms such as coma, the vegetative state, unresponsive wakefulness syndrome, minimally conscious state, covert consciousness and the confusional state. We discuss why these definitions matter, and why there has been such evolution in this nosology over the years, from Jennett and Plum in 1972 to the Multi-Society Task Force in 1994, the Aspen Working Group in 2002 and the 2018 American and 2020 European Disorders of Consciousness guidelines. We then move to a discussion of clinical aspects of disorders of consciousness, the natural history of recovery and ethical issues that arise within the context of caring for people with disorders of consciousness. We conclude with a discussion of key challenges associated with assessing residual consciousness in disorders of consciousness, potential solutions and future directions, including integration of crucial disability rights perspectives.

Guidelines for Conducting Ethical Artificial Intelligence Research in Neurology: A Systematic Approach for Clinicians and Researchers.

Preemptive recognition of the ethical implications of study design and algorithm choices in artificial intelligence (AI) research is an important but challenging process. AI applications have begun to transition from a promising future to clinical reality in neurology. As the clinical management of neurology is often concerned with discrete, often unpredictable, and highly consequential events linked to multimodal data streams over long timescales, forthcoming advances in AI have great potential to transform care for patients. However, critical ethical questions have been raised with implementation of the first AI applications in clinical practice. Clearly, AI will have far-reaching potential to promote, but also to endanger, ethical clinical practice. This article employs an anticipatory ethics approach to scrutinize how researchers in neurology can methodically identify ethical ramifications of design choices early in the research and development process, with a goal of preempting unintended consequences that may violate principles of ethical clinical care. First, we discuss the use of a systematic framework for researchers to identify ethical ramifications of various study design and algorithm choices. Second, using epilepsy as a paradigmatic example, anticipatory clinical scenarios that illustrate unintended ethical consequences are discussed, and failure points in each scenario evaluated. Third, we provide practical recommendations for understanding and addressing ethical ramifications early in methods development stages. Awareness of the ethical implications of study design and algorithm choices that may unintentionally enter AI is crucial to ensuring that incorporation of AI into neurology care leads to patient benefit rather than harm.

Financial Conflicts of Interest of United States-Based Authors in Neurology Journals: Cross-Sectional Study Using the Open Payments Database.

OBJECTIVE: To detail the scope, nature, and disclosure of financial conflicts of interest (COI) between the pharmaceutical and medical device industries (Industry) and authors in high-impact clinical neurology journals. METHODS: Using the Centers for Medicare and Medicaid Services Open Payments Database (OPD), we retrieved information on payments from Industry to 2,000 authors from randomly selected 2016 articles in 5 journals. We categorized payments by type (research, general, and associated research/institutional), sponsoring entity, and year (from 2013 to 2016). Each author's self-disclosures were compared to OPD-listed Industry relationships to measure discordance. Payments were manually reviewed to identify those from manufacturers of products that were directly tested or discussed in the article. We also quantified the prevalence and value of these nondisclosed, relevant COI. RESULTS: Two hundred authors from 158 articles had at least 1 OPD payment. Median/mean annual payments per author were $4,229/$19,586 (general); $1,702/$5,966 (research); and $67,512/$362,102 (associated research). Most neurologists received <$1,000/y (74.6%, 93.0%, and 79.5% for general, research, and associated research, respectively), but a sizeable minority (>10% of authors) received more than $10,000 per year, and several received over $1 million. Of 3,013 payments deemed directly relevant to the article, 50.9% were not self-disclosed by the authors, totaling $5,782,197 ($1,665,603 general; $25,532 research; $4,091,062 associated research). CONCLUSION: Industry-related financial relationships are prevalent among United States-based physicians publishing in major neurology journals, and incomplete self-disclosure is common. As a profession, academic and other neurologists must work to establish firm rules to ensure and manage disclosure of financial COI.

Ethical considerations in neurology during the COVID-19 pandemic.

Coronavirus disease 2019 (COVID-19) pandemic has struck many countries and caused a great number of infected cases and death. Healthcare system across all countries is dealing with the increasing medical, social, and legal issues caused by the COVID-19 pandemic, and the standards of care are being altered. Admittedly, neurology units have been influenced greatly since the first days, as aggressive policies adopted by many hospitals caused eventual shut down of numerous neurologic wards. Considering these drastic alterations, traditional ethical principles have to be integrated with state-of-the-art ethical considerations. This review will consider different ethical aspects of care in neurologic patients during COVID-19 and how this challenging situation has affected standards of care in these patients.

[Ethics in Pediatric Neurology].

There are various types of serious pediatric neurological diseases, although the absolute number of children with either of them is small. These children often have life-threatening conditions with severe disability and rely on medical technologies. Each child follows a different illness trajectory, which makes it difficult to predict his/her prognosis. Given the multiple treatment options, it becomes harder to know when "enough" is enough and what is best for the child. When it comes to critical decision-making, we, as healthcare providers, need to develop a trustful relationship with the parents and promote shared decision-making to fulfill their child's best interest. It is crucial to know what the parents hope and fear, and provide them with access to comprehensive, evidence-based information about their child's current and potential healthcare needs. In this article, four complex ethical issues are reviewed. A broad and constructive discussion is long awaited to ensure that these children's lives are enhanced to their best potential and treated with dignity in our society.

AAN position statement: The COVID-19 pandemic and the ethical duties of the neurologist.

Patients, clinicians, and hospitals have undergone monumental changes during the coronavirus disease 2019 (COVID-19) pandemic. This crisis has forced us to consider the obligations that we neurologists have to our individual patients as well as the greater community. By returning to our fundamental understanding of these duties, we can ensure that we are providing the most ethically appropriate contingency and crisis care possible. We recommend specific adaptations to both the inpatient and outpatient settings, as well as changes to medical and trainee education. Furthermore, we explore the daunting but potentially necessary implementation of scare resource allocation protocols. As the pandemic evolves, we will need to adapt continuously to these rapidly changing circumstances and consider both national and regional standards and variation.

"The Cabinet of Dr. Caligari": The Scientific Debate on Hypnosis and Its Legal Implications between the 19th and the 20th Century.

Movies could provide unexpected information on the state of medical knowledge in different historical periods. The first centenary of the German silent horror movie Das Cabinet des Dr. Caligari (The Cabinet of Dr. Caligari) by Robert Wiene (1873-1938) could be a timely occasion to reflect on the scientific debate of hypnosis and its legal implications between the 19th and the 20th century. In particular, this article describes the positions of the School of Salpêtrière (Charcot) and the School of Nancy (Bernheim) on the possibility of crimes committed by subjects under hypnosis and the influence of these theories on medical community and public opinion of Germany in the interwar period.

AAN position statement: Ethical issues in clinical research in neurology.

This update to the American Academy of Neurology's 1998 position statement endeavors to provide guidance for the consistent ethical conduct and review of neurologic research involving human participants. It does so by outlining a widely used ethical framework of 7 principles derived from the foundational documents of modern bioethics, including the Nuremberg Code, the World Medical Association's Declaration of Helsinki, the Belmont Report, and the US Department of Health and Human Service's Common Rule. The position statement then applies this principle-based framework to analyze and produce recommendations for the management of common and important ethical issues encountered in neurologic clinical research. These include institutional review board oversight, equitable research participant inclusion, cognitive impairment in research participants, international studies, the replication crisis, and genetic testing and modification.

End of life: Expert care and support, not physician-hastened death.

In legal physician-hastened death, a physician prescribes medication with the primary intent of causing the death of a willing terminally ill patient. This practice differs radically from palliative sedation, intended to relieve a patient's suffering rather than cause a patient's death. In this position paper, we argue that the practice of physician-hastened death is contrary to the interests of patients, their families, and the sound ethical practice of medicine. Therefore, the American Academy of Neurology should advise its members against this practice, as it had done until 2018.

Prodromes and Preclinical Detection of Brain Diseases: Surveying the Ethical Landscape of Predicting Brain Health.

The future of medicine lies not primarily in cures but in disease modification and prevention. While the science of preclinical detection is young, it is moving rapidly. Preclinical interventions offer hope to decrease the severity of a disease or delay the development of a disorder. With such promise, the research and practice of detecting brain disorders at a preclinical stage present unique ethical challenges that must be addressed to ensure the benefit of these technologies. Direct brain interventions have the potential to impact not just what a patient has but who they are and who they could become. Further, receiving an assessment for a preclinical or prodromal state has potential to impact perceptions about capacity, autonomy and personhood and could become entangled with stigma and discrimination. Exploring ethical issues alongside and integrated into the experimental design and research of these technologies is critical. This review will highlight ethical issues attendant to the current and near future states of preclinical detection across the life span, specifically as it relates to autism spectrum disorder (ASD), schizophrenia, and Alzheimer's disease.

A Neuroethics Backbone for the Evolving Canadian Brain Research Strategy.

Building on Canada's strong traditions in neuroscience and ethics, neuroethics provides a backbone for the evolving Canadian Brain Research Strategy (CBRS) that, from the outset, incorporates ethically responsible discoveries in brain science into clinical, societal, educational, and commercial innovation.

[Neuroethics of body transplantation]. / Neuroetica del trasplante de cuerpo.

INTRODUCTION: Recent contributions to the specialised literature address the topic of body transplantation, mostly produced by Sergio Canavero and a group of researchers from China. For several years they have been announcing that they will carry out the procedure, but it has still not been performed. AIMS: The aim of this study is to perform a neuroethical analysis of body transplantation, based on the methodology of Diego Gracia on ethics and bioethics and an analysis of facts, values and duties. Furthermore, we also propose that, with the knowledge available today, body transplantation must be addressed from the perspective of research ethics. DEVELOPMENT: As regards the facts, it can be said that, although the history of attempts to perform a body transplant dates back almost a century, there are many limitations preventing it from being performed with our current knowledge. This is due to the fact that no serious and rigorous preclinical research has been conducted (at most some anecdotal data can be found). With the data that is available, it does not even seem possible to think of designing a protocol to include human beings for body transplantation. In terms of values, according to the model developed by Emanuel, who proposes eight requirements that must be met to comply with the ethics of clinical research, it is not even possible to comply with one of them. Regarding duties, it would be wise to recommend that such a procedure should not be carried out on humans. CONCLUSIONS: Considering the scientific knowledge currently available and the values of research ethics, a body transplantation should not be performed in human beings either as clinical research or as clinical practice.

TITLE: Neuroetica del trasplante de cuerpo.Introduccion. Existe bibliografia reciente en revistas especializadas acerca del trasplante de cuerpo, generada fundamentalmente por Sergio Canavero y un grupo chino. Desde hace un par de años vienen anunciando que realizaran el procedimiento, pero aun no ha ocurrido. Objetivo. Realizar un analisis neuroetico sobre el trasplante de cuerpo, proponiendo la metodologia de Diego Gracia en etica y bioetica analizando hechos, valores y deberes. Se propone ademas que, con el conocimiento actual, el trasplante de cuerpo debe tratarse desde la etica de la investigacion. Desarrollo. Aunque desde hace casi un siglo hay antecedentes de intentar conseguir un trasplante de cuerpo, existen numerosas limitaciones para poder realizarlo con el conocimiento actual porque no hay investigacion preclinica seria y rigurosa (se encuentran a lo sumo datos anecdoticos). Con los datos disponibles, ni siquiera parece que pueda pensarse en el diseño de un protocolo de inclusion de seres humanos para el trasplante de cuerpo. En cuanto a valores, atendiendo al modelo de Emanuel, quien propone ocho requisitos para cumplir con la etica de la investigacion clinica, no es posible siquiera cumplir uno cabalmente. Lo mas prudente es recomendar que no debe realizarse un procedimiento asi en seres humanos. Conclusiones. Considerando el conocimiento cientifico disponible y los valores de la etica de la investigacion, no debe realizarse un trasplante de cuerpo en seres humanos, ni como investigacion clinica ni mucho menos como practica clinica.