Adolescent perspectives about their participation in alcohol intervention research in emergency care: A qualitative exploration using ethical principles as an analytical framework.

AIMS: To explore adolescents' experiences of consenting to, and participating in, alcohol intervention trials when attending for emergency care. METHODS: In-depth semi-structured interviews with 27 adolescents (16 males; aged 14-17 years (Mage = 15.7)) who had taken part in one of two linked brief alcohol intervention trials based in 10 accident and emergency departments in England. Interviews were transcribed verbatim and subject to thematic analysis. RESULTS: Research and intervention methods were generally found to be acceptable though confidentiality was important and parental presence could hinder truthful disclosures regarding alcohol use. Participants discussed the importance of being involved in research that was relevant to them and recognised alcohol consumption as a normative part of adolescence, highlighting the importance of having access to appropriate health information. Beyond this, they recognised the benefits and risks of trial participation for themselves and others with the majority showing a degree of altruism in considering longer term implications for others as well as themselves. CONCLUSIONS: Alcohol screening and intervention in emergency care is both acceptable and relevant to adolescents but acceptability is reliant on confidentiality being assured and may be inhibited by parental presence. TRIAL REGISTRATION: ISRCTN Number: 45300218.

Prodromal spinocerebellar ataxia type 2: Prospects for early interventions and ethical challenges

The characterization of prodromal stages in neurodegenerative disorders is becoming increasingly important because of the need for early neuroprotective therapies. Research during the past 3 decades in spinocerebellar ataxia type 2 has revealed a large body of evidence suggesting that many disease features precede the manifest cerebellar syndrome, which delineates the prodromal stage of this disorder. This stage is defined by clinical, imaging, and functional criteria, which are supported by early molecular events demonstrated in animal models. Knowledge regarding prodromal spinocerebellar ataxia type 2 provides insight into the mechanisms underlying neurodegeneration from the early stages, which enables the design of promising disease-modifying clinical trials through the identification of the optimum moment to begin the therapies, the appropriate selection of individuals, and the identification of sensitive outcome measures. The management of patients in prodromal spinocerebellar ataxia type 2 may raise ethical dilemmas related to predictive diagnosis and early interventions, which impose new challenges to clinical and therapeutic research (AU)

Prodromal spinocerebellar ataxia type 2: Prospects for early interventions and ethical challenges.

The characterization of prodromal stages in neurodegenerative disorders is becoming increasingly important because of the need for early neuroprotective therapies. Research during the past 3 decades in spinocerebellar ataxia type 2 has revealed a large body of evidence suggesting that many disease features precede the manifest cerebellar syndrome, which delineates the prodromal stage of this disorder. This stage is defined by clinical, imaging, and functional criteria, which are supported by early molecular events demonstrated in animal models. Knowledge regarding prodromal spinocerebellar ataxia type 2 provides insight into the mechanisms underlying neurodegeneration from the early stages, which enables the design of promising disease-modifying clinical trials through the identification of the optimum moment to begin the therapies, the appropriate selection of individuals, and the identification of sensitive outcome measures. The management of patients in prodromal spinocerebellar ataxia type 2 may raise ethical dilemmas related to predictive diagnosis and early interventions, which impose new challenges to clinical and therapeutic research. © 2017 International Parkinson and Movement Disorder Society.

Ethical considerations in preventive interventions for bipolar disorder.

AIM: Early intervention and prevention of serious mental disorders such as bipolar disorder has the promise of decreasing the burden associated with these disorders. With increasing early and preventive intervention efforts among cohorts such as those with a familial risk for bipolar disorder, there is a need to examine the associated ethical concerns. The aim of this review was to examine the ethical issues underpinning the clinical research on pre-onset identification and preventive interventions for bipolar disorder. METHODS: We undertook a PubMed search updated to November 2014 incorporating search terms such as bipolar, mania, hypomania, ethic*(truncated), early intervention, prevention, genetic and family. RESULTS: Fifty-six articles that were identified by this method as well as other relevant articles were examined within a framework of ethical principles including beneficence, non-maleficence, respect for autonomy and justice. The primary risks associated with research and clinical interventions include stigma and labelling, especially among familial high-risk youth. Side effects from interventions are another concern. The benefits of preventive or early interventions were in the amelioration of symptoms as well as the possibility of minimizing disability, cognitive impairment and progression of the illness. Supporting the autonomy of individuals and improving access to stigma-free care may help moderate the potential challenges associated with the risks of interventions. CONCLUSIONS: Concerns about the risks of early identification and pre-onset interventions should be balanced against the potential benefits, the individuals' right to choice and by improving availability of services that balance such dilemmas.

Reconsidering the ethical permissibility of the use of unregistered interventions against Ebola virus disease.

Ethical considerations for the use of unregistered interventions for Ebola virus disease have sparked considerable debate among academic and clinical ethicists. In August 2014 the World Health Organization (WHO) convened a panel of experts to discuss approaches to the outbreak in West Africa, with the goal of determining "whether it is ethical to use unregistered interventions with unknown adverse effects for possible treatment or prophylaxis". 1 The panel concluded that there would be an ethical imperative to provide such unregistered interventions if specific criteria could be met. This paper evaluates the WHO conclusion and argues that although it may be reasonable to provide unregistered interventions considering the circumstance, there is no clear ethical imperative to do so.

Early psychotic experiences: Interventions, problems and perspectives.

Psychotic or psychotic-like experiences and symptoms may precede and be indicative of later psychosis emergence. DSM-5 has introduced Attenuated Psychosis Syndrome (APS) as a condition for further study, arguing for its clinical validity and the need for identifying sub- threshold psychotic states. Early psychosis intervention has an already established role in reducing the Duration of Untreated Psychosis (DUP), delaying psychosis onset and relieving Ultra High Risk (UHR) individuals from their presenting symptoms. Pharmacological and mainly psycho-therapeutical approaches are suggested for this purpose. Cognitive Behavior Therapy (CBT) seems to have clear evidence of favorable outcome concerning transition to psychosis rates, omega-3 fatty acids lower but promising evidence, while low-dose antipsychotic medication or antidepressant treatment may seem beneficial, but it remains unclear if the reported favorable effects persist in the long term and how long intervention in UHR subjects should be given for. Case management and close monitoring based on principles of social psychiatry are considered key elements for the management of UHR individuals. However, the blazing case about early psychosis concerns the accurate specification of the prodromal stage of psychosis, which may set the basis for meaningful and effective early intervention. Although psychometric tools have been developed and provide a common criteria-based recognition method, debate is alive and well regarding "false positive" cases, since most UHR subjects will not finally develop psychosis. Moreover, transition rates to psychosis have been declining over the years, leading to fierce criticism over the validity of the UHR/ APS state and legitimacy of its treatment. On this framework, ethical issues of stigmatizing through unnecessary diagnosing and antipsychotics' prescribing are matters of serious questioning. Clinical heterogeneity and high comorbidity are further implications of the UHR state. Current research emphasizes on improving validity of inclusion criteria and formulating personalised and clinical stage- based intervention strategies. In order to do that, early psychosis recognition and intervention services are established throughout the world, trying to contribute in research by applying clinical, cognitive or neuropsychological criteria. Nevertheless, in the majority of so far conducted studies, samples sizes are considered small and duration of follow-up short, which are limitations yet to overcome. Other scientific voices argue that the UHR state might represent a non-specific risk factor for psychiatric disorders in general and not necessarily for psychosis and tend to examine the UHR and early intervention idea under the prism of subthreshold or early mental distress state. Either way, recognizing and intervening early in emerging psychiatric states, especially in those with psychotic or psychotic-like symptomatology, share indisputable benefits under the broader concept of prevention, setting a strong scientific-clinical rationale for service provision to help-seeking people and the possibility of changing the course for those with vulnerability to psychotic illnesses.