Vast quantities of personal health information and private identifiable information are being created through mobile apps, wearable sensors, and social networks. While new strategies and tools for obtaining health data have expanded researchers' abilities to design and test personalized and adaptive health interventions, the deployment of pervasive sensing and computational techniques to gather research data is raising ethical challenges for Institutional Review Boards (IRBs) charged with protecting research participants. To explore experiences with, and perceptions about, technology-enabled research, and identify solutions for promoting responsible conduct of this research we conducted focus groups with human research protection program and IRB affiliates. Our findings outline the need for increased collaboration across stakeholders in terms of: (1) shared and dynamic resources that improve awareness of technologies and decrease potential threats to participant privacy and data confidentiality, and (2) development of appropriate and dynamic standards through collaboration with stakeholders in the research ethics community.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1080/23294515.2017.1403980 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Virulence and pathogenicity of group B : Virulence factors and their roles in perinatal infection.
Virulence
December 2025
Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, USA.
This review summarizes key virulence factors associated with group B (GBS), a significant pathogen particularly affecting pregnant women, fetuses, and infants. Beginning with an introduction to the historical transition of GBS from a zoonotic pathogen to a prominent cause of human infections, particularly in the perinatal period, the review describes major disease manifestations caused by GBS, including sepsis, meningitis, chorioamnionitis, pneumonia, and others, linking each to specific virulence mechanisms. A detailed exploration of the genetic basis for GBS pathogenicity follows, emphasizing the roles of capsules in pathogenesis and immune evasion.
View Article and Find Full Text PDFA novel approach to completely alleviate peripheral neuropathic pain in human patients: insights from preclinical data.
Front Neuroanat
January 2025
Department of Anatomy, College of Medicine and Health Sciences, United Arab Emirates University, Al Ain, United Arab Emirates.
Neuropathic pain is a pervasive health concern worldwide, posing significant challenges to both clinicians and neuroscientists. While acute pain serves as a warning signal for potential tissue damage, neuropathic pain represents a chronic pathological condition resulting from injury or disease affecting sensory pathways of the nervous system. Neuropathic pain is characterized by long-lasting ipsilateral hyperalgesia (increased sensitivity to pain), allodynia (pain sensation in response to stimuli that are not normally painful), and spontaneous unprovoked pain.
View Article and Find Full Text PDFLived Experiences of Patients Hospitalized With Acute Decompensated Heart Failure and Kidney Dysfunction.
JAMA Netw Open
January 2025
Department of Medicine, University of Washington, Seattle.
Importance: For patients hospitalized with acute decompensated heart failure (ADHF), the presence of kidney dysfunction can substantially shape prognosis and treatment options. Yet little is known about the lived experiences of these medically vulnerable patients.
Objective: To elicit accounts of the illness and care experiences of patients currently or recently hospitalized with ADHF and kidney dysfunction in order to identify potential opportunities to improve care.
The lived experience of postpartum depression and psychosis in women: a bottom-up review co-written by experts by experience and academics.
World Psychiatry
February 2025
Department of Psychiatry, University of Campania "L. Vanvitelli", Naples, Italy.
This is the first bottom-up review of the lived experience of postpartum depression and psychosis in women. The study has been co-designed, co-conducted and co-written by experts by experience and academics, drawing on first-person accounts within and outside the medical field. The material initially identified was shared with all participants in a cloud-based system, discussed across the research team, and enriched by phenomenological insights.
View Article and Find Full Text PDFCardiotoxicity of tris(2-chloroethyl) phosphate exposure: Insights into the role of oxygen sensor mediated energy metabolism remodeling.
J Hazard Mater
January 2025
Department of Occupational Health and Environmental Health, School of Public Health, Qingdao University, Qingdao, China. Electronic address:
Tris(2-chloroethyl) phosphate, an extensively used organophosphorus flame retardant in consumer products, has caused pervasive environmental contamination and increased human exposure, raising concerns about its cardiotoxic potential. However, the detailed toxicological profile, particularly concerning the crucial cardiac energy metabolism, and the precise mechanisms remain poorly understood. This study in C57BL/6 J mice exposed to TCEP for 36 days at varying doses revealed cardiac dysfunction, structural abnormalities, and hypoxia.
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!