7 research outputs found

    Ethics Priorities of the Curing Coma Campaign: An Empirical Survey.

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    The Curing Coma Campaign (CCC) is a multidisciplinary global initiative focused on evaluation, diagnosis, treatment, research, and prognostication for patients who are comatose due to any etiology. To support this mission, the CCC Ethics Working Group conducted a survey of CCC collaborators to identify the ethics priorities of the CCC and the variability in priorities based on country of practice. An electronic survey on the ethics priorities for the CCC was developed using rank-choice questions and distributed between May and July 2021 to a listserv of the 164 collaborators of the CCC. The median rank for each topic and subtopic was determined. Comparisons were made on the basis of country of practice. The survey was completed by 93 respondents (57% response rate); 67% practiced in the United States. On the basis of respondent ranking of each topic, the prioritization of ethics topics across respondents was as follows: (1) clinical care, (2) diagnostic definitions, (3) clinical research, (4) implementation/innovation, (5) family, (6) data management, (7) public engagement/perceptions, and (8) equity. Respondents who practiced in the United States were particularly concerned about public engagement, the distinction between clinical care and research, disclosure of results from clinical research to families, the definition of "personhood," and the distinction between the self-fulfilling prophecy/nihilism and medical futility. Respondents who practiced in other countries were particularly concerned about diagnostic modalities for clinical care, investigational drugs/devices for clinical research, translation of research into practice, and the definition of "minimally conscious state." Collaborators of the CCC considered clinical care, diagnostic definitions, and clinical research the top ethics priorities of the CCC. These priorities should be considered as the CCC explores ways to improve evaluation, diagnosis, treatment, research, and prognostication of patients with coma and associated disorders of consciousness. There is some variability in ethics priorities based on country of practice

    Ethics Along the Continuum of Research Involving Persons with Disorders of Consciousness.

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    Interest in disorders of consciousness (DoC) has grown substantially over the past decade and has illuminated the importance of improving understanding of DoC biology; care needs (use of monitoring, performance of interventions, and provision of emotional support); treatment options to promote recovery; and outcome prediction. Exploration of these topics requires awareness of numerous ethics considerations related to rights and resources. The Curing Coma Campaign Ethics Working Group used its expertise in neurocritical care, neuropalliative care, neuroethics, neuroscience, philosophy, and research to formulate an informal review of ethics considerations along the continuum of research involving persons with DoC related to the following: (1) study design; (2) comparison of risks versus benefits; (3) selection of inclusion and exclusion criteria; (4) screening, recruitment, and enrollment; (5) consent; (6) data protection; (7) disclosure of results to surrogates and/or legally authorized representatives; (8) translation of research into practice; (9) identification and management of conflicts of interest; (10) equity and resource availability; and (11) inclusion of minors with DoC in research. Awareness of these ethics considerations when planning and performing research involving persons with DoC will ensure that the participant rights are respected while maximizing the impact and meaningfulness of the research, interpretation of outcomes, and communication of results

    Pedigree and mating system analyses in a western larch (Larix occidentalis Nutt.) experimental population

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    \bulletThe mating pattern and gene flow in a western larch (Larix occidentalis Nutt.) experimental population was studied with the aid of microsatellite markers and a combination of paternity-mating system analysis. The commonly difficult to assess, male gametic contribution was determined with 95% confidence and its impact on genetic gain and diversity was determined. \bullet Male fertility success rate ranged between 0 and 11%. Male reproductive output parental imbalance was observed with 50% of the pollen being produced by the top 5% of males while the lower 39% males only produced 10% of the pollen. \bullet A significant difference was observed between male effective population size (genetic diversity) estimates from paternity assignment compared to those based on population's census number (21 vs. 41); however, this difference did not affect estimates of genetic gain. \bullet A total of 221 full-fib families were identified (sample size range: 1–8) and were nested among the studied 14 seed-donors. \bullet A combination of paternity-mating system analysis is recommended to provide a better insight into seed orchards' mating dynamics. While pollen flow tends to inflate mating system's outcrossing rate, the paternity analysis effectively determined the rate and magnitude of contamination across receptive females.Analyse de paternité et du mode de croisement dans une population expérimentale de mélèze occidental (Larix occidentalis Nutt.). \bullet Les modes de croisement et les flux de gènes dans une population expérimentale de mélèze occidental (Larix occidentalis Nutt.) ont été étudiés à l'aide de marqueurs microsatellites et d'une analyse combinée de paternité et du système de reproduction. La contribution gamétique mâle – communément difficile à estimer – a été déterminée avec un seuil de confiance de 95 % et son impact sur le gain génétique et la diversité a été déterminé. \bullet Le taux de succès reproductif mâle était compris entre 0 et 11 %. Un déséquilibre dans la contribution des parents mâles a été observé avec la production de 50 % du pollen par 5 % des pères alors que 39 % d'entre eux ne contribuaient que pour seulement 10 % du pollen. \bullet Une différence significative a été observée entre la taille efficace de la population mâle (diversité génétique) estimée par la recherche de paternité et celle basée sur les effectifs recensés de la population (21 vs. 41) ; cependant, cette différence n'affecte pas l'estimation du gain génétique. \bullet 221 familles de plein-frères ont été identifiées (effectifs entre 1 et 8), regroupées parmi les 14 arbres-mères étudiés. \bullet La combinaison d'une analyse de paternité et du système de reproduction est recommandée pour étudier de manière approfondie la dynamique de croisement en vergers à graines. Tandis que les flux de pollen tendent à augmenter le taux d'inter-croisements, l'analyse de paternité détermine de manière effective le taux et l'amplitude de contamination des arbres-mères

    Saving Lives, Saving Money: Shepherding the Role of Technology

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