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Biomedical data are now organized in large-scale databases allowing researchers worldwide to access and utilize the data for new projects. As new technologies generate even larger amounts of data, data governance and data management are becoming pressing challenges. The FAIR principles (Findable, Accessible, Interoperable, and Reusable) were developed to facilitate data sharing. However, the Indigenous Data Sovereignty movement advocates for greater Indigenous control and oversight in order to share data on Indigenous Peoples' terms. This is especially true in the context of genetic research where Indigenous Peoples historically have been unethically exploited in the name of science. This article outlines the relationship between sovereignty and ethics in the context of data to describe the collective rights that Indigenous Peoples assert to increase control over their biomedical data. Then drawing on the CARE Principles for Indigenous Data Governance (Collective benefit, Authority to control, Responsibility, and Ethics), we explore how standards already set by Native nations in the United States, such as tribal research codes, provide direction for implementation of the CARE Principles to complement FAIR. A broader approach to policy and procedure regarding tribal participation in biomedical research is required and we make recommendations for tribes, institutions, and ethical practice.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8977641 | PMC |
http://dx.doi.org/10.3389/fgene.2022.823309 | DOI Listing |
US Cardiol
November 2021
Department of Medicine, Division of Cardiology, University of Minnesota Minneapolis, MN.
The rising incidence and recognition of cardiogenic shock has led to an increase in the use of veno-arterial extracorporeal membrane oxygenation (VA-ECMO). As clinical experience with this therapy has increased, there has also been a rapid growth in the body of observational and randomized data describing the clinical and logistical considerations required to institute a VA-ECMO program with successful clinical outcomes. The aim of this review is to summarize this contemporary data in the context of four key themes that pertain to VA-ECMO programs: the principles of patient selection; basic hemodynamic and technical principles underlying VA-ECMO; contraindications to VA-ECMO therapy; and common complications and intensive care considerations that are encountered in the setting of VA-ECMO therapy.
View Article and Find Full Text PDFJ Med Life
October 2024
Department of Family and Community Medicine, Prince Sultan Military Medical City (PSMMC), Riyadh, Saudi Arabia.
Diabetes mellitus is a chronic and complex medical condition that can lead to significant morbidity and mortality. Maintaining an adequate blood glucose level is important for patients with diabetes, and to improve glycemic control, patients need proper support and health education, which are essential components of comprehensive diabetes care. We used a rigorous approach based on the PRISMA and Cochrane Handbook principles, specifically focusing on randomized controlled trials (RCTs) published in English from 2005 onwards.
View Article and Find Full Text PDFBMC Med Educ
December 2024
Department of Primary Care & Clinical Simulation, University of Otago, Christchurch, New Zealand.
Background: New Zealand guidelines stipulate that patient consent is obtained for medical student involvement in clinical care, however, patients' preferences regarding consent for medical student teaching have not been widely explored. This study examined patient preferences for consent for medical student teaching with the aim to increase patient empowerment, to optimise care and to reflect societal expectations more accurately.
Method: Observational, semi-qualitative, cross-sectional study of in-patients.
Respir Res
December 2024
Department of Pulmonary Medicine, University Medical Center Essen, Ruhrlandklinik, Essen, Germany.
Background: Using primary airway epithelial cells (AEC) is essential to mimic more closely different types and stages of lung disease in humans while reducing or even replacing animal experiments. Access to lung tissue remains limited because these samples are generally obtained from patients who undergo lung transplantation for end-stage lung disease or thoracic surgery for (mostly) lung cancer. We investigated whether forceps or cryo biopsies are a viable alternative source of AEC compared to the conventional technique.
View Article and Find Full Text PDFBMC Public Health
December 2024
Institute of Primary Care, University of Zurich and University Hospital Zurich, Zurich, Switzerland.
Background: Recently, the importance of social networks and other contextual factors in shaping health literacy of adolescents has gained recognition. However, research often simply refers to context without explicitly describing it. In this qualitative study, we aimed to explore how adolescents activate their (social) resources to develop and practice health literacy within a Swiss cantonal school health service program and in their everyday lives.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!