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| http://dx.doi.org/10.1002/eat.23617 | DOI Listing |
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Design and implementation of an action plan for justice, equity, diversity, and inclusion within the Clinical Genome Resource.
Am J Hum Genet
January 2025
National Human Genome Research Institute, National Institutes of Health (NIH), Bethesda, MD, USA.
How might members of a large, multi-institutional research and resource consortium foster justice, equity, diversity, and inclusion as central to its mission, goals, governance, and culture? These four principles, often referred to as JEDI, can be aspirational-but to be operationalized, they must be supported by concrete actions, investments, and a persistent long-term commitment to the principles themselves, which often requires self-reflection and course correction. We present here the iterative design process implemented across the Clinical Genome Resource (ClinGen) that led to the development of an action plan to operationalize JEDI principles across three major domains, with specific deliverables and commitments dedicated to each. Active involvement of consortium leadership, buy-in from its members at all levels, and support from NIH program staff at pivotal stages were essential to the success of this effort.
View Article and Find Full Text PDFDecisions about Medical Treatment and Care, the Legality Assumptions and Sovereign Power - Empowering Patients Out of the State of Bare Life?
J Law Med
November 2024
Menzies Health Institute Queensland, Griffith University, Queensland, Australia.
The framing of patients making decisions about their medical treatment and care as traditional legal decisions, thresholds and formalities is a means to avoid legal liabilities through a rationalisation of decision-making, autonomy and choice. A credible account for the actual place of patients posits the sovereign power (founded in the works of Carl Schmitt and Giorgio Agamben) of the health care professional deciding the state of exception - a discrete legal space where the authority of health care professionals is both lawful and beyond the law. This reveals that dealing with broadly conceived consent issues with more law, more process and procedure but without addressing the inherent legality assumptions that empower health care professionals will always be flawed.
View Article and Find Full Text PDFThe Impact of Organisational Interventions on Student Perceptions of the Learning Environment: A Repeated Cross-Sectional Study.
Clin Teach
February 2025
Department of Internal Medicine, University of California Davis School of Medicine, Sacramento, California, USA.
Background: The learning environment (LE) refers to the social interactions, organisational culture and physical spaces that shape learners' perceptions and learning. With numerous efforts to measure and improve it, there is still a lack of clearly identified, evidence-based interventions that impact the LE. Our aims were to design LE interventions and measure their effectiveness using a comparison of student responses on the Association of American Medical Colleges Graduation Questionnaire (AAMC GQ).
View Article and Find Full Text PDFTruth-telling for terminally ill patients is a challenging ethical and social issue for Chinese health care professionals. However, despite the existence of ethical and moral standards for nurses, they frequently encounter moral dilemmas when making decisions about truth-telling to patients with end-stage diseases in China. This article aims to provide ethical strategies for clinical nurses in China regarding truth-telling decisions for terminally ill patients on the basis of their individual autonomy.
View Article and Find Full Text PDFEnhancing shared street accessibility in heritage sites for individuals with visual disabilities: a Canadian perspective.
Front Rehabil Sci
December 2024
School of Rehabilitation Sciences, Université Laval, Quebec, QC, Canada.
Introduction: Heritage sites often pose significant accessibility challenges for individuals with visual disabilities due to their preserved architectural features and strict regulations against modifications. In shared streets, designed to encourage pedestrian use and reduce vehicle dominance, these challenges are exacerbated by the lack of tactile and directional cues for visually impaired users. This study, set in the context of Canadian heritage sites, explores how shared streets can be adapted to be more inclusive while respecting the integrity of historical environments.
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