Background The increasing integration of digital health tools into care may result in a greater
flow of personal health information (PHI) between patients and providers. Although privacy …

Introduction: Community engagement (CE) is an ethical imperative in research, but the
knowledge base for what constitutes effective and ethically sound CE is limited. Ubuntu, as a …

Participation in biobanks tends to favor certain groups—white, middle-class, more highly-
educated—often to the exclusion of others, such as indigenous people, the socially …

Expectations to share data underlying studies are increasing, but research on how
participants, particularly those in qualitative research, respond to requests for data sharing is …

Developments in medical big data analytics may bring societal benefits but are also
challenging privacy and other ethical values. At the same time, an overly restrictive data …

Genetic genealogy databases have become particularly attractive to law enforcement
agencies, especially in the United States (US), which have started to employ genealogists to …

Background Biobank participants often do not understand much of the information they are
provided as part of the informed consent process, despite numerous attempts at simplifying …

This study aimed to explore experiences and practices of key research team members in
obtaining informed consent for pharmacogenetics research and to identify the approaches …

Background Limited research has been conducted on explanations and understandings of
biobanking for future genomic research in African contexts with low literacy and limited …

Background Observational studies using large-scale databases and biobanks help improve
prevention and treatment of sudden cardiac arrest (SCA) but the lack of guidance on data …