Integrating Public Health Ethics into Public Health Policymaking: Being in the Room Where It Happens.

This commentary takes up a challenge posed by Franklin Miller in a 2022 essay in Bioethics Forum. Dr. Miller queried whether bioethicists could be useful in public health policy contexts and while he refrained from issuing an ultimate opinion, did identify several challenges to such utility.

The Miami Framework for ALS and related neurodegenerative disorders: an integrated view of phenotype and biology.

Increasing appreciation of the phenotypic and biological overlap between amyotrophic lateral sclerosis (ALS) and frontotemporal dementia, alongside evolving biomarker evidence for a pre-symptomatic stage of disease and observations that this stage of disease might not always be clinically silent, is challenging traditional views of these disorders. These advances have highlighted the need to adapt ingrained notions of these clinical syndromes to include both the full phenotypic continuum - from clinically silent, to prodromal, to clinically manifest - and the expanded phenotypic spectrum that includes ALS, frontotemporal dementia and some movement disorders. The updated clinical paradigms should also align with our understanding of the biology of these disorders, reflected in measurable biomarkers.

Data stewardship in FTLD research: Investigator and research participant views.

Introduction: Federal policies and guidelines have expanded the return of individual results to participants and expectations for data sharing between investigators and through repositories. Here, we report investigators' and study participants' views and experiences with data stewardship practices within frontotemporal lobal degeneration (FTLD) research, which reveal unique ethical challenges.

Methods: Semi-structured interviews with (1) investigators conducting FTLD research that includes genetic data collection and/or analysis and (2) participants enrolled in a single site longitudinal FTLD study.

Creating an Unprotected Class: Addressing Legal Risks in the Era of Biologically-Defined Alzheimer's Disease.

Background: Documentation of preclinical biomarker tests for Alzheimer's disease (AD) in the medical record may expose patients to employment and insurance discrimination risks. There is a gap in research describing clinicians' approaches to documenting biomarker results.

Objective: To evaluate discrimination risks faced by patients undergoing biomarker testing for AD through a qualitative analysis of clinician documentation practices.

Crime, Incarceration, and Dementia: An Aging Criminal System.

Dementia within the criminal system, from arrest through incarceration, has been largely ignored. While the health system has begun grappling with the chronic conditions that will accompany an aging society, the criminal system has yet to meaningfully respond. Dementia is a clinical syndrome characterized by impairment in cognitive domains (memory, executive function, visuospatial).

Forgotten and without Protections: Older Adults in Prison Settings.

The number of older adults incarcerated in prisons is growing significantly, and there is a great need for legal authority, processes, and resources to mitigate individual and social burdens of elder neglect and abuse within these settings. Older adults in prison may be particularly vulnerable to abuse, neglect, or exploitation. They are dependent on the carceral system for basic resources, are at risk for retaliatory actions for reporting mistreatment, and bear disproportionately high health burdens.

Out-of-Pocket Expenses for Long-Term Care by Dementia Status and Residential Setting among US Older Adults.

Objective: To examine long-term care out-of-pocket payments by dementia status and residential setting.

Design: Compare monthly out-of-pocket long-term care expenses paid to facilities and helpers, total monthly out-of-pocket long-term expenses and as a percentage of monthly income by dementia status and residential status (community, residential facility, and nursing home).

Setting And Participants: US Nationwide, 2019 National Health and Aging Trends Study (NHATS) respondents aged ≥70 years.

The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All.

The brain changes of Alzheimer's disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline.

Geriatricians' Perspectives on the Multiple Dimensions of Utility of Genetic Testing for Alzheimer's Disease: A Qualitative Study.

Background: Research advancements in Alzheimer's disease (AD) raise opportunities for genetic testing to improve diagnostic and risk assessment. Despite emerging developments, it is unclear how geriatricians perceive the potential clinical and personal utility of genetic testing for their patients. Geriatricians' perspectives are essential to understanding potential ethical, policy, and clinical challenges.

Preventing amyotrophic lateral sclerosis: insights from pre-symptomatic neurodegenerative diseases.

Significant progress has been made in understanding the pre-symptomatic phase of amyotrophic lateral sclerosis. While much is still unknown, advances in other neurodegenerative diseases offer valuable insights. Indeed, it is increasingly clear that the well-recognized clinical syndromes of Alzheimer's disease, Parkinson's disease, Huntington's disease, spinal muscular atrophy and frontotemporal dementia are also each preceded by a pre-symptomatic or prodromal period of varying duration, during which the underlying disease process unfolds, with associated compensatory changes and loss of inherent system redundancy.

A Qualitative Analysis of Ethical Perspectives on Recruitment and Consent for Human Intracranial Electrophysiology Studies.

Intracranial electrophysiological research methods, including those applying electrodes on the cortical surface or in deep structures, have become increasingly important in human neuroscience. They also pose novel ethical concerns, as human studies require the participation of neurological patients undergoing surgery for conditions such as epilepsy and Parkinson's disease. Research participants in this setting may be vulnerable to conflicts of interest, therapeutic misconception, and other threats to valid recruitment and consent.

Private payer coverage policies for ApoE-e4 genetic testing.

Purpose: ApoE-e4 has a well-established connection to late-onset Alzheimer disease (AD) and is available clinically. Yet, there have been no analyses of payer coverage policies for ApoE. Our objective was to analyze private payer coverage policies for ApoE genetic testing, examine the rationales, and describe supporting evidence referenced by policies.

A Matter of Intent: A Social Obligation to Improve Criminal Procedures for Individuals with Dementia.

The relationship between dementia and criminal behavior perplexes legal and health care systems. Dementia is a progressive clinical syndrome defined by impairment in at least two cognitive domains that interferes with one's activities of daily. Dementia symptoms have been associated with behaviors that violate social norms and constitute criminal actions.

Alzheimer's disease biomarkers: another tool for FAA pilot screening?

Research advancements to improve the accuracy of diagnosing Alzheimer's disease (AD) have altered clinicians and researchers' understanding of the disease process. The discovery of amyloid and tau biomarkers as measures of disease pathology supports early identification of disease risk that precedes symptom onset. As a result, AD is now understood to be an underlying pathology that causes a spectrum of clinical syndromes, beginning with preclinical AD.

Concussion reporting and perceived knowledge of professional fighters.

: For concussions to be effectively managed in sports, they need to be correctly identified and reported. The extent to which professional athletes correctly recognize concussions, and their willingness to report symptoms, is not yet well understood. Given the risk of head injuries leading to concussions across combat sports, insight into professional fighters' knowledge and reporting of concussive symptoms is essential to improve concussion management.

Appropriate use criteria for lumbar puncture and cerebrospinal fluid testing in the diagnosis of Alzheimer's disease.

Introduction: The Alzheimer's Association convened a multidisciplinary workgroup to develop appropriate use criteria to guide the safe and optimal use of the lumbar puncture procedure and cerebrospinal fluid (CSF) testing for Alzheimer's disease pathology detection in the diagnostic process.

Methods: The workgroup, experienced in the ethical use of lumbar puncture and CSF analysis, developed key research questions to guide the systematic review of the evidence and developed clinical indications commonly encountered in clinical practice based on key patient groups in whom the use of lumbar puncture and CSF may be considered as part of the diagnostic process. Based on their expertise and interpretation of the evidence from systematic review, members rated each indication as appropriate or inappropriate.