scholarly journals Informed Consent for the Human Research Subject with a Neurologic Disorder

2018 ◽  
Vol 38 (05) ◽  
pp. 539-547 ◽  
Author(s):  
Neil Vaishnav ◽  
Winston Chiong

AbstractThe doctrine of informed consent sits at the intersection of law, ethics, and neuroscience, posing unique challenges for human subject research involving neurological patients. These challenges are compounded by the variegated nature of both neurological injury and the law governing research consent. This article provides a framework for investigators likely to encounter subjects with some degree of neurological impairment, whose capacity to consent requires scrupulous assessment prior to enrollment in research trials. We consider several researches and disease contexts—from emergency epilepsy research to long-term dementia research—and clarify the ethical and legal principles governing consent for participation in each. We additionally explore empirical research on consent capacity and survey several areas of emerging ethical import that will require the attention of investigators in decades to come.

2021 ◽  
Vol 13 (5) ◽  
pp. 2675
Author(s):  
Elena Jianu ◽  
Ramona Pîrvu ◽  
Gheorghe Axinte ◽  
Ovidiu Toma ◽  
Andrei Valentin Cojocaru ◽  
...  

Reducing inequalities for EU citizens and promoting upward convergence is one of the priorities on the agenda of the European Commission and, certainly, inequality will be a very important public policy issue for years to come. Through this research we aim to investigate EU labor market inequalities, reflected by the specific indicators proposed for Goal 8 assumed by the 2030 Agenda for Sustainable Development, based on cluster analysis for all the 27 Member States. The research results showed encouraging results from the perspective of convergence in the EU labor market, but also revealed a number of analyzed variable effects that manifested regional inequalities that were generated in the medium and long term. Based on the observations made, we want to provide information for policy-makers, business practitioners, and academics so as to constitute solid ground for identifying good practices and proposing to implement policies aimed at reducing existing inequalities and supporting sustainable development.


2021 ◽  
Vol 12 (1) ◽  
Author(s):  
Najeh Hcini ◽  
Yaovi Kugbe ◽  
Zo Hasina Linah Rafalimanana ◽  
Véronique Lambert ◽  
Meredith Mathieu ◽  
...  

AbstractLittle is known about the long-term neurological development of children diagnosed with congenital Zika infection at birth. Here, we report the imaging and clinical outcomes up to three years of life of a cohort of 129 children exposed to Zika virus in utero. Eighteen of them (14%) had a laboratory confirmed congenital Zika infection at birth. Infected neonates have a higher risk of adverse neonatal and early infantile outcomes (death, structural brain anomalies or neurologic symptoms) than those who tested negative: 8/18 (44%) vs 4/111 (4%), aRR 10.1 [3.5–29.0]. Neurological impairment, neurosensory alterations or delays in motor acquisition are more common in infants with a congenital Zika infection at birth: 6/15 (40%) vs 5/96 (5%), aRR 6.7 [2.2–20.0]. Finally, infected children also have an increased risk of subspecialty referral for suspected neurodevelopmental delay by three years of life: 7/11 (64%) vs 7/51 (14%), aRR 4.4 [1.9–10.1]. Infected infants without structural brain anomalies also appear to have an increased risk, although to a lesser extent, of neurological abnormalities. It seems paramount to offer systematic testing for congenital ZIKV infection in cases of in utero exposure and adapt counseling based on these results.


BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037957
Author(s):  
Fuxin Lin ◽  
Qiu He ◽  
Zhuyu Gao ◽  
Lianghong Yu ◽  
Dengliang Wang ◽  
...  

IntroductionThe treatment decision and long-term outcomes of previously untreated cerebral cavernous malformation (U-CCM) are still controversial. Therefore, we are conducting a nationwide multicentre prospective registry study in China to determine the natural history and effect of surgical treatment on long-term outcomes in Chinese people with U-CCM.Methods and analysisThis study was started on 1 January 2018 and is currently ongoing. It is a cohort follow-up study across a 5-year period. Patients will be followed up for at least 3 years after inception. Patients with U-CCM will be enrolled from 24 Grade III, level A hospitals distributed all over China. The cohort size is estimated to be 1200 patients. Patients are registered in surgically treated group and conservatively treated group. Clinical characteristics, radiology information and laboratory data are prospectively collected using an electronic case report form through an electronic data capture system. The primary outcome of this study is poor clinical outcome at the last follow-up (modified Rankin Scale score >2 lasting at least 1 year). The secondary outcome includes symptomatic haemorrhage, drug refractory epilepsy, focal neurological deficits, morbidity and all-cause mortality during follow-up. Univariate and multivariate regression analysis will be performed to determine the risk factors for poor outcomes in all patients, and to estimate the effect of surgery. Life tables, Kaplan-Meier estimates, log-rank test and proportional hazards Cox regression will be used to analyse the follow-up data of conservatively treated patients to determine the natural history of U-CCM. Initial presentation and location of U-CCM are prespecified subgroup factors.Ethics and disseminationThe study protocol and informed consent form have been reviewed and approved by the Research Ethical Committee of First Affiliated Hospital of Fujian Medical University (FAHFMU-2018-003).Written informed consent will be obtained from each adult participant or from the guardian of each paediatric participant. The final results will be published in peer-reviewed journals.Trial registration numberNCT03467295.


2021 ◽  
pp. 136078042110095
Author(s):  
Jessica Gerrard ◽  
Juliet Watson

This article demonstrates how unemployment is made productive through workfare activities for older disadvantaged job seekers. We suggest that the requirement to look for work, engage in education and training, and participate in voluntary work blurs the boundaries between employment and unemployment. Drawing on in-depth qualitative research with older disadvantaged job seekers, we demonstrate how this obligatory productivity is lived and felt, characterised by shame and frustration and framed by the temporality of waiting and searching for work. We suggest that this experience of ‘productive’ unemployment can be described as a dissonant state of ‘transitional stasis’, whereby job seekers are expected to transition out of unemployment and poverty while experiencing the long-term and ongoing effects of immobility.


Author(s):  
MANOJ R. AGARWAL ◽  
JOSE FERRAN ◽  
KATHERINE OST ◽  
KENNETH C. M. WILSON

2021 ◽  
Vol 10 (S1) ◽  
pp. S6-S13
Author(s):  
Mitchell McSweeney ◽  
Per G. Svensson ◽  
Michael L. Naraine

The case explores how Sport4Change will adapt its sport-for-development (SFD) programs in response to the current uncertainty presented by COVID-19. Being able to innovate program operations, implementation, and delivery is key to the success and long-term sustainability of Sport4Change, and changing program strategies needs to be done correctly given the organization’s varying locations around the world. Making such decisions requires consideration of the various contexts in which Sport4Change works, understanding diverse options to implement SFD through technological or remote means, and aligning remote delivery and operations with each SFD location and their in-person program focus and goals in order to come up with solutions to ensure SFD remains impactful during COVID-19.


2021 ◽  
Vol 30 (17) ◽  
pp. 1016-1022
Author(s):  
Aby Mitchell ◽  
Reuben Pearce

Nurse prescribing has become a well-established aspect of advanced clinical practice working alongside key NHS principles and drivers to address the increasing complexities in patient care and the demands on the health service. Prescribing practice is governed by ethical and legal principles to ensure a holistic patient-centred approach. It has been recognised as a valuable resource that could effectively transform healthcare services to reduce hospital admissions and long hospital stays and improve the quality of life for patients with long-term conditions and multiple comorbidities. This article will provide an overview of prescribing practice.


2019 ◽  
pp. 244-271
Author(s):  
Martin Pugh

This chapter discusses how, misled by Islamophobic propaganda, Britain and America were unable to come to terms with what they called ‘Islamism’. The origins of what is variously known as Islamism, Islamic fundamentalism, and radical Islamism lie in the 1960s, in the ideas of a handful of Muslims in Pakistan, Egypt, and Iran who believed that Muslims had been led astray from their religion by nationalist movements. Although some Muslims were critical of Western morality and politics, Islamism was not primarily anti-Western: it was essentially a reaction against what were widely seen as the corrupt, authoritarian, and secular regimes that controlled much of the Muslim world. The aim was to evict them, return to a purer form of Islam and re-create an Islamic state. In view of the exaggerated reputation it enjoys in the West, it is worth remembering that this movement has largely been a failure. Yet while fundamentalism appeals to only a small minority, it is also the case that large numbers of Muslims have become aggrieved by the policies of the Western powers. The explanation for this can be found in long-term frustration with the consistently pro-Israeli policy of Britain and the United States over Palestine, in addition to the proximate causes in the shape of two Afghan wars, the genocide in Bosnia, the Rushdie affair, and the first Gulf War in 1990, which made many Muslims see themselves as the victims of Western aggression and interventionism.


2011 ◽  
Vol 20 (01) ◽  
pp. 146-155
Author(s):  
A. V. Alekseyenko ◽  
Y. Aphinyanaphongs ◽  
S. Brown ◽  
D. Fenyo ◽  
L. Fu ◽  
...  

SummaryTo survey major developments and trends in the field of Bioinformatics in 2010 and their relationships to those of previous years, with emphasis on long-term trends, on best practices, on quality of the science of informatics, and on quality of science as a function of informatics.A critical review of articles in the literature of Bioinformatics over the past year.Our main results suggest that Bioinformatics continues to be a major catalyst for progress in Biology and Translational Medicine, as a consequence of new assaying technologies, most predominantly Next Generation Sequencing, which are changing the landscape of modern biological and medical research. These assays critically depend on bioinformatics and have led to quick growth of corresponding informatics methods development. Clinical-grade molecular signatures are proliferating at a rapid rate. However, a highly publicized incident at a prominent university showed that deficiencies in informatics methods can lead to catastrophic consequences for important scientific projects. Developing evidence-driven protocols and best practices is greatly needed given how serious are the implications for the quality of translational and basic science.Several exciting new methods have appeared over the past 18 months, that open new roads for progress in bioinformatics methods and their impact in biomedicine. At the same time, the range of open problems of great significance is extensive, ensuring the vitality of the field for many years to come.


2021 ◽  
pp. 096372142110538
Author(s):  
Wendy Johnson

Increasingly, we are required, encouraged, and/or motivated to track our behavior, presumably to improve our life “quality.” But health and life-satisfaction trends are not cooperating: Empirical evidence for success is sorely lacking. Intelligence has been tracked for more than 100 years; perhaps this example offers some hints about tracking’s overall social impact. I suggest that Huxley’s Brave New World offers a relevant long-term extrapolation and that popular recent tracking activities will accelerate “progress” in that dystopian direction.


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