Objectives: To establish the views of research volunteers on the consent process; to explore their views on the consent process in different research scenarios; to inform debate on emerging models of consent for participation in research.
Design, Setting And Participants: 2,308 adult volunteers from the TwinsUK Registry (www.twinsuk.ac.uk) completed an online survey about their views on the consent process for use of their DNA and medical information in research. Their views on the re-consenting process in different scenarios were assessed.
Results: The majority of volunteers preferred to be informed of the identity of the main researcher of a study in which they are participating, which is contrary to current practice. Over 80% were willing to complete the consent process online instead of face to face. On the whole, respondents did not view their DNA differently from their medical information with regard to the consent process. Research participants were more willing to give broad consent to cover future research if their DNA was to be used by the original researcher than by another researcher, even if the disease under investigation varied, in contrast to the traditional 'gold standard' whereby specific consent is required for all new research projects.
Discussion: In some scenarios, research participants reported that they would be comfortable with not signing a new consent form for future research uses of their data and DNA, and are comfortable with secure, online consent processes rather than traditional face-to-face consent processes. Our findings indicate that the perceived relationship between research participants and researchers plays an important role in shaping preferences regarding the consent process and suggest that this relationship is not captured by traditional consent processes. We argue that the development of new formats of consent should be informed by empirical research on volunteers' perceptions and preferences regarding the consent process.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4356519 | PMC |
| http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0118027 | PLOS |
Publication Analysis
Top Keywords
Similar Publications
Amelioration of liver fibrosis with autologous macrophages induced by IL-34-based condition.
Inflamm Regen
January 2025
Division of Immunobiology, Institute for Genetic Medicine, Hokkaido University, Sapporo, Japan.
Background: For the treatment of liver fibrosis, several novel cell therapies have been proposed. Autologous macrophage therapy has been reported as one of the promising treatments. So far, most studies have used colony-stimulating factor 1 (CSF-1) to induce the differentiation of macrophage progenitor cells.
View Article and Find Full Text PDFRapidly progressive glomerulonephritis as an unusual type of renal involvement in sarcoidosis: a case report.
J Med Case Rep
January 2025
Transplant-Nephrology Department, Transplantation Center, University Hospital Martin, Kollarova 2, 03601, Martin, Slovakia.
Introduction: Sarcoidosis is a multisystem inflammatory disease of unknown etiology characterized by the formation of noncaseating epithelioid granulomas. Clinically significant renal involvement is rare in sarcoidosis. It most commonly manifests as chronic tubulointerstitial nephritis and nephrocalcinosis with nephrolithiasis.
View Article and Find Full Text PDFSpatial transcriptome reveals histology-correlated immune signature learnt by deep learning attention mechanism on H&E-stained images for ovarian cancer prognosis.
J Transl Med
January 2025
Department of Gynecologic Oncology and Reproductive Medicine, Unit 1362, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX, 77030, USA.
Background: The ability to predict the prognosis of patients with ovarian cancer can greatly improve disease management. However, the knowledge on the mechanism of the prediction is limited. We sought to deconvolute the attention feature learnt by a deep learning convolutional neural networks trained with whole-slide images (WSIs) of hematoxylin-and-eosin (H&E)-stained tumor samples using spatial transcriptomic data.
View Article and Find Full Text PDFProgress in mentalizing ability among people with psychosis through dialogic literary gatherings.
BMC Psychol
January 2025
Faculty of Education and Sports, University of Deusto, Bilbao, Spain.
Background: People with psychosis often experience a fragmented sense of self, making it difficult to integrate perceptions, memories, thoughts, and emotions related to themselves and others. Enhancing mentalization processes and fostering reflection are crucial for comprehensive recovery. As these processes are naturally developed through meaningful interactions and dialogue, incorporating a dialogic approach into the treatment of psychotic disorders may significantly support recovery.
View Article and Find Full Text PDFCommonly prescribed medications and risk of pneumonia and all-cause mortality in people with idiopathic pulmonary fibrosis: a UK population-based cohort study.
Pneumonia (Nathan)
January 2025
School of Public Health, Imperial College London, London, UK.
Background: A growing body of evidence suggests that prolonged use of inhaled corticosteroids (ICS) and proton pump inhibitors (PPIs) is associated with increased risks of pneumonia. A substantial proportion of people with idiopathic pulmonary fibrosis (IPF) are prescribed PPIs or ICS to treat common comorbidities, giving rise to concerns that use of these medications may be associated with potential harms in this patient population.
Methods: We used UK Clinical Practice Research Datalink (CPRD) Aurum primary care data linked to national mortality and hospital admissions data to create a cohort of people diagnosed with IPF on or after 1 January 2010.
Want 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!