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


Journal

Neurocritical care
ISSN: 1556-0961
Titre abrégé: Neurocrit Care
Pays: United States
ID NLM: 101156086

Informations de publication

Date de publication:
Dec 2023
Historique:
received: 16 12 2022
accepted: 23 02 2023
medline: 4 12 2023
pubmed: 29 3 2023
entrez: 28 3 2023
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 36977963
doi: 10.1007/s12028-023-01708-2
pii: 10.1007/s12028-023-01708-2
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

565-577

Subventions

Organisme : NINDS NIH HHS
ID : R01 NS106014
Pays : United States

Informations de copyright

© 2023. Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society.

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Auteurs

Ariane Lewis (A)

NYU Langone Medical Center, 530 First Avenue, Skirball-7R, New York, NY, 10016, USA. ariane.kansas.lewis@gmail.com.

Michael J Young (MJ)

Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.

Benjamin Rohaut (B)

Inserm, CNRS, APHP - Hôpital de la Pitié Salpêtrière, Paris Brain Institute - ICM, DMU Neuroscience, Sorbonne University, Paris, France.

Ralf J Jox (RJ)

Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.

Jan Claassen (J)

New York Presbyterian Hospital, Columbia University, New York, NY, USA.

Claire J Creutzfeldt (CJ)

Harborview Medical Center, Seattle, WA, USA.
University of Washington, Seattle, WA, USA.
Cambia Palliative Care Center of Excellence, Seattle, WA, USA.

Judy Illes (J)

University of British Columbia, Vancouver, BC, Canada.

Matthew Kirschen (M)

The Children's Hospital of Philadelphia, Philadelphia, PA, USA.

Stephen Trevick (S)

Northwest Neurology, Chicago, IL, USA.

Joseph J Fins (JJ)

Weill Cornell Medical College, New York, NY, USA.
Yale Law School, New Haven, CT, USA.
Rockefeller University, New York, NY, USA.

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