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1.
J Neurol ; 271(5): 2258-2273, 2024 May.
Article in English | MEDLINE | ID: mdl-38367046

ABSTRACT

Neurological conditions are the leading cause of disability and mortality combined, demanding innovative, scalable, and sustainable solutions. Brain health has become a global priority with adoption of the World Health Organization's Intersectoral Global Action Plan in 2022. Simultaneously, rapid advancements in artificial intelligence (AI) are revolutionizing neurological research and practice. This scoping review of 66 original articles explores the value of AI in neurology and brain health, systematizing the landscape for emergent clinical opportunities and future trends across the care trajectory: prevention, risk stratification, early detection, diagnosis, management, and rehabilitation. AI's potential to advance personalized precision neurology and global brain health directives hinges on resolving core challenges across four pillars-models, data, feasibility/equity, and regulation/innovation-through concerted pursuit of targeted recommendations. Paramount actions include swift, ethical, equity-focused integration of novel technologies into clinical workflows, mitigating data-related issues, counteracting digital inequity gaps, and establishing robust governance frameworks balancing safety and innovation.


Subject(s)
Artificial Intelligence , Neurology , Humans , Neurology/methods , Health Policy , Nervous System Diseases/therapy , Nervous System Diseases/diagnosis
2.
J Law Biosci ; 11(1): lsad032, 2024.
Article in English | MEDLINE | ID: mdl-38259629

ABSTRACT

As we approach an era of potentially widespread consumer neurotechnology, scholars and organizations worldwide have started to raise concerns about the data privacy issues these devices will present. Notably absent in these discussions is empirical evidence about how the public perceives that same information. This article presents the results of a nationwide survey on public perceptions of brain data, to inform discussions of law and policy regarding brain data governance. The survey reveals that the public may perceive certain brain data as less sensitive than other 'private' information, like social security numbers, but more sensitive than some 'public' information, like media preferences. The findings also reveal that not all inferences about mental experiences may be perceived as equally sensitive, and perhaps not all data should be treated alike in ethical and policy discussions. An enhanced understanding of public perceptions of brain data could advance the development of ethical and legal norms concerning consumer neurotechnology.

4.
Science ; 382(6670): 523, 2023 11 03.
Article in English | MEDLINE | ID: mdl-37917699

ABSTRACT

Big Tech must center human rights in data decisions, argues a political scientist.

5.
Camb Q Healthc Ethics ; : 1-21, 2023 May 15.
Article in English | MEDLINE | ID: mdl-37183686

ABSTRACT

The rise of neurotechnologies, especially in combination with artificial intelligence (AI)-based methods for brain data analytics, has given rise to concerns around the protection of mental privacy, mental integrity and cognitive liberty - often framed as "neurorights" in ethical, legal, and policy discussions. Several states are now looking at including neurorights into their constitutional legal frameworks, and international institutions and organizations, such as UNESCO and the Council of Europe, are taking an active interest in developing international policy and governance guidelines on this issue. However, in many discussions of neurorights the philosophical assumptions, ethical frames of reference and legal interpretation are either not made explicit or conflict with each other. The aim of this multidisciplinary work is to provide conceptual, ethical, and legal foundations that allow for facilitating a common minimalist conceptual understanding of mental privacy, mental integrity, and cognitive liberty to facilitate scholarly, legal, and policy discussions.

7.
Neurotherapeutics ; 19(4): 1248-1258, 2022 07.
Article in English | MEDLINE | ID: mdl-35585374

ABSTRACT

Despite extensive research, amyotrophic lateral sclerosis (ALS) remains a progressive and invariably fatal neurodegenerative disease. Limited knowledge of the underlying causes of ALS has made it difficult to target upstream biological mechanisms of disease, and therapeutic interventions are usually administered relatively late in the course of disease. Genetic forms of ALS offer a unique opportunity for therapeutic development, as genetic associations may reveal potential insights into disease etiology. Genetic ALS may also be amenable to investigating earlier intervention given the possibility of identifying clinically presymptomatic, at-risk individuals with causative genetic variants. There is increasing evidence for a presymptomatic phase of ALS, with biomarker data from the Pre-Symptomatic Familial ALS (Pre-fALS) study showing that an elevation in blood neurofilament light chain (NfL) precedes phenoconversion to clinically manifest disease. Tofersen is an investigational antisense oligonucleotide designed to reduce synthesis of superoxide dismutase 1 (SOD1) protein through degradation of SOD1 mRNA. Informed by Pre-fALS and the tofersen clinical development program, the ATLAS study (NCT04856982) is designed to evaluate the impact of initiating tofersen in presymptomatic carriers of SOD1 variants associated with high or complete penetrance and rapid disease progression who also have biomarker evidence of disease activity (elevated plasma NfL). The ATLAS study will investigate whether tofersen can delay the emergence of clinically manifest ALS. To our knowledge, ATLAS is the first interventional trial in presymptomatic ALS and has the potential to yield important insights into the design and conduct of presymptomatic trials, identification, and monitoring of at-risk individuals, and future treatment paradigms in ALS.


Subject(s)
Amyotrophic Lateral Sclerosis , Neurodegenerative Diseases , Humans , Superoxide Dismutase-1/genetics , Amyotrophic Lateral Sclerosis/drug therapy , Amyotrophic Lateral Sclerosis/genetics , Superoxide Dismutase/genetics , Oligonucleotides, Antisense/therapeutic use , Biomarkers , RNA, Messenger , Mutation
8.
Cell ; 184(8): 1962-1963, 2021 04 15.
Article in English | MEDLINE | ID: mdl-33861959

ABSTRACT

In this issue of Cell, Tan et al. report the first injection of human stem cells into in vitro non-human primate blastocysts with significant survival of the human cells, raising new scientific possibilities but also important ethical issues.


Subject(s)
Chimera , Embryo, Mammalian , Animals , Blastocyst , Haplorhini , Humans , Stem Cells
10.
AJOB Neurosci ; 11(3): 148-154, 2020.
Article in English | MEDLINE | ID: mdl-32716745

ABSTRACT

The NIH-funded Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative has led to significant advances in what we know about the functions and capacities of the brain. This multifaceted and expansive effort supports a range of experimentation from cells to circuits, and its outputs promise to ease suffering from various neurological injuries, diseases, and neuropsychiatric conditions. At the midway point of the 10-year BRAIN Initiative, we pause to consider how these studies, and neuroscience research more broadly, may bear on human characteristics and moral concepts such as identity, agency, and others. This midway point also offers us an opportunity to evaluate the sociology and impacts of BRAIN Initiative-funded investigations to ensure that ethical standards of fairness and justice pervade the scientific process itself. Neuroethics inquiry provides a mechanism to invite relevant, novel expertise from the wide array of disciplines that intersect with biomedicine in neuroscience research. As the BRAIN Initiative and the broader field of neuroscience proceed, neuroethics serves as a central component of neuroscience inquiry to i) foster necessary and beneficial collaborations for responsible discovery; ii) ensure a rigorous, reproducible, and representative neuroscience research process; and iii) explore the unique nature of study of the human brain through accurate and representative models of its function and dysfunction.


Subject(s)
Neurosciences , Brain , Human Characteristics , Humans , Moral Obligations , Morals
11.
Nature ; 568(7752): 299-302, 2019 04.
Article in English | MEDLINE | ID: mdl-30996311

Subject(s)
Brain , Morals , Animals , Autopsy , Swine
13.
Neuron ; 101(3): 394-398, 2019 02 06.
Article in English | MEDLINE | ID: mdl-30731065

ABSTRACT

The NIH Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative is focused on developing new tools and neurotechnologies to transform our understanding of the brain, and neuroethics is an essential component of this research effort. Coordination with other brain projects around the world will help maximize success.


Subject(s)
National Institutes of Health (U.S.)/ethics , Neurosciences/ethics , Bioethics , Humans , National Institutes of Health (U.S.)/standards , Neurosciences/methods , Neurosciences/organization & administration , Practice Guidelines as Topic , United States
16.
J Law Biosci ; 2(3): 485-509, 2015 Nov.
Article in English | MEDLINE | ID: mdl-27774210

ABSTRACT

The goal of this study was to examine the growing use of neurological and behavioral genetic evidence by criminal defendants in US criminal law. Judicial opinions issued between 2005-12 that discussed the use of neuroscience or behavioral genetics by criminal defendants were identified, coded and analysed. Criminal defendants are increasingly introducing such evidence to challenge defendants' competency, the effectiveness of defense counsel at trial, and to mitigate punishment.

17.
PLoS Biol ; 12(11): e1001983, 2014 Nov.
Article in English | MEDLINE | ID: mdl-25369215

ABSTRACT

Fulfilling the promise of the genetic revolution requires the analysis of large datasets containing information from thousands to millions of participants. However, sharing human genomic data requires protecting subjects from potential harm. Current models rely on de-identification techniques in which privacy versus data utility becomes a zero-sum game. Instead, we propose the use of trust-enabling techniques to create a solution in which researchers and participants both win. To do so we introduce three principles that facilitate trust in genetic research and outline one possible framework built upon those principles. Our hope is that such trust-centric frameworks provide a sustainable solution that reconciles genetic privacy with data sharing and facilitates genetic research.


Subject(s)
Genetic Privacy , Genome, Human , Genomics/legislation & jurisprudence , Informed Consent , Trust , Community-Based Participatory Research , Humans
18.
Ann Neurol ; 76(2): 296-304, 2014 Aug.
Article in English | MEDLINE | ID: mdl-24980651

ABSTRACT

OBJECTIVE: Some have argued that physicians should not presume to make thrombolysis decisions for incapacitated patients with acute ischemic stroke because the risks and benefits of thrombolysis involve deeply personal values. We evaluated the influence of the inability to consent and of personal health-related values on older adults' emergency treatment preferences for both ischemic stroke and cardiac arrest. METHODS: A total of 2,154 US adults age ≥50 years read vignettes in which they had either suffered an acute ischemic stroke and could be treated with thrombolysis, or had suffered a sudden cardiac arrest and could be treated with cardiopulmonary resuscitation. Participants were then asked (1) whether they would want the intervention, or (2) whether they would want to be given the intervention even if their informed consent could not be obtained. We elicited health-related values as predictors of these judgments. RESULTS: Older adults were as likely to want stroke thrombolysis when unable to consent (78.1%) as when asked directly (76.2%), whereas older adults were more likely to want cardiopulmonary resuscitation when unable to consent (83.6% compared to 75.9%). Greater confidence in the medical system and reliance on statistical information in decision making were both associated with desiring thrombolysis. INTERPRETATION: Older adults regard thrombolysis no less favorably when considering a situation in which they are unable to consent. These findings provide empirical support for recent professional society recommendations to treat ischemic stroke with thrombolysis in appropriate emergency circumstances under a presumption of consent.


Subject(s)
Brain Ischemia/drug therapy , Informed Consent/ethics , Patient Preference/psychology , Stroke/drug therapy , Thrombolytic Therapy/ethics , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged
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