Background In the age of digitalization and big data, personal health information is a key
resource for health care and clinical research. This study aimed to analyze the determinants …

Boosted by the COVID-19 pandemic, as well as the tightened General Data Protection
Regulation (GDPR) legislation within the European Union (EU), individuals have become …

The objective of this study is to investigate the level of understanding that internet users
have regarding data privacy, security, and protection. The study aims to determine the extent …

Population-based genomics studies have proven successful in identifying genetic variants
associated with diseases. High-quality biospecimens linked with informative health data …

Genomic sequencing technologies (GS) pose novel challenges not seen in older genetic
technologies, making traditional standards for fully informed consent difficult or impossible to …

Low levels of public trust in biobanks are perceived to be a deterrent to participation and a
threat to their sustainability. Acting in a “trustworthy” manner is seen to be one approach to …

Background While genomic data sharing can facilitate important health research and
discovery benefits, these must be balanced against potential privacy risks and harms to …

Research in genetics relies heavily on voluntary contributions of personal data. We aimed to
acquire insights into the differences between participants and refusers of participation in a …

Introduction Sharing of health data for secondary uses such as research and public policy
development is common. There are many potential benefits, but also risks if information …

Background Bioethical debates about privacy, big data, and public health surveillance have
not sufficiently engaged the perspectives of those being surveilled. The data justice …