Purpose Data sharing is increasingly being recognized as an essential component of
scholarly research and publishing. Sharing data improves results and propels research and …

Abstract The Cooperative Health Research in South Tyrol (CHRIS) is a longitudinal study in
Northern Italy, using dynamic consent since its inception in 2011. The CHRIS study collects …

In the era of information technology and big data, the extraction, commodification, and
control of personal information is redefining how people relate and interact. However, the …

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 …

Some individuals' understanding of informed consent (IC) information may improve with
electronic delivery, but others may benefit from face-to-face (F2F). This randomized, multisite …

Biobank participants are often unaware of possible uses of their genetic and health
information, despite explicit descriptions of those uses in consent forms. To explore why this …

Data repositories, like research biobanks, seek to optimise the number of responding
participants while simultaneously attempting to increase the amount of data donated per …

Background Large-scale, centralized data repositories are playing a critical and
unprecedented role in fostering innovative health research, leading to new opportunities as …

Why do some people withdraw from biobank studies? To our knowledge, very few studies
have been done on the reflections of biobank ex-participants. In this article, we report from …

The social and ethical implications of large-scale biobank donor recruitment campaigns
have remained understudied. We use two recent campaigns of the population-based …