Objective: To assess public views on emergency exception to informed consent in resuscitation research, public awareness of such studies, and effective methods of community consultation and public notification.
Methods: A face-to-face survey was conducted in two academic Level I trauma center emergency departments (EDs) in Oregon and Minnesota from June through August 2001.
Results: Five hundred thirty people completed the survey, with an 82% response rate. The mean age of the respondents was 41 years (range 18-95) with a standard deviation of 14.5; 46% were female and 64% white. Most (88%) believed that research subjects should be informed prior to being enrolled, while 49% believed enrolling patients without prior consent in an emergency situation would be acceptable and 70% (369) would not object to be entered into such a study without providing prospective informed consent. Informing and consulting the community as a substitute for patient consent in emergency research was thought to be reasonable by 45% of the respondents. Most respondents would prefer to be informed about a study using emergency exception from informed consent by radio and television media (42%). Two hundred fifty-eight respondents (49%) stated they would attend a community meeting; the less educated were more likely to attend than those with college degrees (OR = 0.53; 95% CI = 0.33 to 0.85, p = 0.008). However, only 5% knew of ongoing studies in their community using emergency exception from informed consent.
Conclusions: Most respondents disagreed with foregoing prospective informed consent for research participation even in emergency situations; however, many would be willing to participate in studies using emergency exception from informed consent. Most respondents would not attend community meetings, and would prefer to rely upon the media for information. Very few were aware of emergency exception from informed consent studies in their community. This suggests that current methods of community notification may not be effective.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1111/j.1553-2712.2003.tb01348.x | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
SAHD-10: Development and initial validation of a short version of the Schedule of Attitudes Toward Hastened Death based on a large multinational sample.
Palliat Support Care
January 2025
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
Objectives: Wishes to hasten death (WTHDs) are common in patients with serious illness. The Schedule of Attitudes Toward Hastened Death (SAHD) is a validated 20-item instrument for measuring WTHD. Two short versions have also been developed based on statistical item selection.
View Article and Find Full Text PDFNew recommendations of Spanish Society of Emergency Medicine (SEMES) for emergency department diagnosis of HIV infection based on results from Spain's "Leave Your Mark" program.
Emergencias
December 2024
Servicio de Urgencias, Hospital Clínic, IDIBAPS, Universitat de Barcelona, Barcelona, España.
Hidden infections and late diagnoses are currently the main challenges of the HIV pandemic. Emergency departments (EDs) are one of the health care system's key resources addressing these challenges. In 2020, the Spanish Society of Emergency Medicine (SEMES) published recommendations for ordering HIV serology testing for patients with certain health conditions, and in 2021 SEMES launched the "Leave Your Mark" (Deja tu Huella - DTH) program to facilitate implementing the recommendations during emergency care.
View Article and Find Full Text PDFAssessment of Health Literacy in Parents of Children With Familial Mediterranean Fever Using the Turkish Health Literacy Scale.
Cureus
December 2024
Department of Pediatric Rheumatology, Kocaeli University, Kocaeli, TUR.
Background Health literacy (HL) refers to the ability of individuals to find, understand, and use information and resources to make informed health-related decisions and actions for themselves and others. Managing chronic diseases in children and adolescents requires active family involvement. The primary objective of the study is to evaluate the HL levels of parents of children diagnosed with familial Mediterranean fever (FMF).
View Article and Find Full Text PDFGlobal Perspectives on Returning Genetic Research Results in Parkinson Disease.
Neurol Genet
December 2024
From the Division of Neurology (A.H.T., S.-Y.L.), Department of Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia; Programa de Pós-Graduação em Ciências Médicas da Universidade Federal do Rio Grande do Sul (P.S.-A.), Clínica Santa María, Santiago, Chile; Departamento de Farmacologia (A.F.S.S.), Universidade Federal do Rio Grande do Sul; Serviço de Neurologia (A.F.S.S.), Hospital de Clínicas de Porto Alegre, Brazil; Institute of Neurogenetics (H.M., M.L.D., C.K.), University of Lübeck, Germany; Department of Biomedical Science (A.A.-A.), Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia; The Michael J. Fox Foundation for Parkinson's Research (J.S., B.F.), New York; Department of Medical and Molecular Genetics (C.E.W.), Indiana University, Indianapolis; Department of Neuroscience and Brain Health (M.L.D.), Metropolitan Medical Center, Manila, Philippines; Centre for Preventive Neurology (S.D., M.T.P., A.J.N.), Wolfson Institute of Population Health, Queen Mary University of London, United Kingdom; Unidad de Trastornos del Movimiento (M.T.P.), Servicio de Neurología y Neurofisiología Clínica, Instituto de Biomedicina de Sevilla, Hospital Universitario Virgen del Rocío/CSIC/Universidad de Sevilla, Spain; Laboratory of Neurogenetics (M.B.M.), National Institute on Aging, National Institutes of Health, Bethesda, MD; Department of Clinical and Movement Neurosciences (M.B.M., H.R.M.), UCL Queen Square Institute of Neurology, University College London, United Kingdom; Department of Neurology (R.N.A.), Columbia University Irving Medical Center, New York; Movement Disorders Division (R.N.A.), Neurological Institute, Tel Aviv Sourasky Medical Center and Tel Aviv School of Medicine, Tel Aviv University, Israel; Molecular Medicine Laboratory and Neurology Department (K.R.K.), Concord Clinical School, Concord Repatriation General Hospital, The University of Sydney; Translational Neurogenomics Group (K.R.K.), Genomic and Inherited Disease Program, Garvan Institute of Medical Research; and St Vincent's Healthcare Campus (K.R.K.), Faculty of Medicine, UNSW Sydney, Darlinghurst, New South Wales, Australia.
Background And Objectives: In the era of precision medicine, genetic test results have become increasingly relevant in the care of patients with Parkinson disease (PD). While large research consortia are performing widespread research genetic testing to accelerate discoveries, debate continues about whether, and to what extent, the results should be returned to patients. Ethically, it is imperative to keep participants informed, especially when findings are potentially actionable.
View Article and Find Full Text PDFEffects of traditional Chinese medicine massage therapy on pain, functional activity, muscle activation patterns and proprioception in knee osteoarthritis: a randomised controlled trial protocol.
BMJ Open
December 2024
Shanghai Shuguang Hospital Affiliated with Shanghai University of TCM, Shanghai, Shanghai, China
Introduction: Health education, weight control and exercise therapy are recognised treatment options for the non-surgical management of knee osteoarthritis (KOA); however, the pain and muscle fatigue associated with exercise make it difficult for patients to initially adhere. Traditional Chinese medicine (TCM) massage is an important complementary and alternative therapy that can effectively address these deficiencies. According to TCM theory and preliminary clinical practice, loosening of the muscles while pointing to acupoints can promote the recovery of KOA.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!