Introduction: Stored human samples and the establishment of biobanks are increasing in the world. Along with this there are the questions of ethics that arise such as the correct method of obtaining informed consent for research on stored samples and the policies involved in collaborative research using collected samples. This study is an attempt to evaluate the researchers, academics and policy makers' views on these ethical aspects.

Methods: This was an anonymised study involving a Sri Lankan population of researchers, ethics committee members, and policy makers. A self administered questionnaire was utilised as the study instrument. The questionnaire captured four major areas of interest: demographic characteristics of respondents, their attitudes on informed consent policy, their opinion on rights of collaborating researchers, their attitudes on dealing with international differences in regulatory frameworks.

Results: The study included 55 responders with 40/55 (73%) agreeing that donors should receive the option of giving informed consent for future research, with 31/55 (56%) considering multiple- type consent options most appropriate. Regarding the issue of shared samples in collaborative research majority agreed that source country ethics review committee approval was necessary 53/55 (96%).

Conclusion: The study concludes that sample donors should be given the option of giving advance consent to unspecified future research provided that future research is approved by an ethics committee. In collaborative research, it is necessary to involve ethics committees from donor countries in the research approval process.

Download full-text PDF

Source
http://dx.doi.org/10.1111/dewb.12065DOI Listing

Publication Analysis

Top Keywords

informed consent
12
policy makers'
8
stored human
8
ethics committee
8
ethics
5
consent
5
study
5
survey scientist
4
policy
4
scientist policy
4

Similar Publications

Point-of-care ultrasound in the diagnosis of hepatic gas gangrene.

J Ultrasound

January 2025

Argentinian Critical Care Ultrasonography Association (ASARUC), Buenos Aires, Argentina.

Hepatic gas gangrene (HGG) is a rare but life-threatening condition typically caused by anaerobic bacteria such as Clostridium perfringens, though Gram-negative bacteria like Escherichia coli and Klebsiella species have also been implicated. Traditionally diagnosed via computed tomography (CT), point-of-care ultrasound (POCUS) has emerged as a valuable tool in critical care settings for its non-invasive, bedside utility. We report the case of a 51-year-old female with choledochal syndrome secondary to cholangiocarcinoma who developed HGG following left extended hepatectomy and biliary reconstruction.

View Article and Find Full Text PDF

Changes in cerebrovascular reactivity as a marker of cognitive impairment risk: a transcranial Doppler study.

J Ultrasound

January 2025

Clinical Unit of Neurology, Department of Medicine, Surgery and Health Sciences, University Hospital and Health Services of Trieste, ASUGI, University of Trieste, Strada di Fiume, 447, 34149, Trieste, Italy.

Introduction: Post-stroke cognitive impairment (PSCI) and dementia affect short- and long-term outcome after stroke and can persist even after recover from a physical handicap. The process underlying PSCI is not yet fully understood. Transcranial Doppler ultrasound (TCD) is a feasible method to investigate cerebrovascular aging or dementia, through the pulsatility index (PI), the cerebrovascular reactivity (e.

View Article and Find Full Text PDF

Purpose: Our study evaluated skeletal muscle mass, function and quality among mild autonomous cortisol secretion (MACS) patients and non-functioning adrenal incidentaloma (NFAI) patients in comparison with the control group without adrenal mass.

Methods: 63 NFAI (49 female, 14 male) and 31 MACS (24 female, 7 male) patients were included in the study. As the control group, 44 patients (31 women, 13 men) who were known to have no radiological adrenal pathology on computed tomography or magnetic resonance imaging performed for other reasons were selected.

View Article and Find Full Text PDF

Comparing answers of ChatGPT and Google Gemini to common questions on benign anal conditions.

Tech Coloproctol

January 2025

Ellen Leifer Shulman and Steven Shulman Digestive Disease Center, Cleveland Clinic Florida, 2950 Cleveland Clinic Blvd, Weston, FL, USA.

Introduction: Chatbots have been increasingly used as a source of patient education. This study aimed to compare the answers of ChatGPT-4 and Google Gemini to common questions on benign anal conditions in terms of appropriateness, comprehensiveness, and language level.

Methods: Each chatbot was asked a set of 30 questions on hemorrhoidal disease, anal fissures, and anal fistulas.

View Article and Find Full Text PDF

18F-Sodium Fluoride PET/CT as a Tool to Assess Enthesopathies in X-Linked Hypophosphatemia.

Calcif Tissue Int

January 2025

Endocrinology Department, School of Medicine, Pontificia Universidad Católica de Chile, Av. Diagonal Paraguay 262, Cuarto Piso, Santiago, Chile.

X-linked hypophosphatemia (XLH) is a rare metabolic disorder characterized by elevated FGF23 and chronic hypophosphatemia, leading to impaired skeletal mineralization and enthesopathies that are associated with pain, stiffness, and diminished quality of life. The natural history of enthesopathies in XLH remains poorly defined, partly due to absence of a sensitive quantitative tool for assessment and monitoring. This study investigates the utility of 18F-NaF PET/CT scans in characterizing enthesopathies in XLH subjects.

View Article and Find Full Text PDF

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!