Advances in computing technology and bioinformatics mean that medical
research is increasingly characterized by large international consortia of
researchers that are reliant on large data sets and biobanks. These trends raise
a number of challenges for obtaining consent, protecting participant privacy
concerns and maintaining public trust. Participant-centred initiatives (PCIs)
use social media technologies to address these immediate concerns, but they also
provide the basis for long-term interactive partnerships. Here, we give an
overview of this rapidly moving field by providing an analysis of the different
PCI approaches, as well as the benefits and challenges of implementing PCIs.
Mobile health (mHealth) customers shopping for applications (apps) should be aware of app privacy practices so they can make informed decisions about purchase and use. We sought to assess the availability, scope, and transparency of mHealth app privacy policies on iOS and Android. Over 35,000 mHealth apps are available for iOS and Android. Of the 600 most commonly used apps, only 183 (30.5%) had privacy policies. Average policy length was 1755 (SD 1301) words with a reading grade level of 16 (SD 2.9). Two thirds (66.1%) of privacy policies did not specifically address the app itself. Our findings show that currently mHealth developers often fail to provide app privacy policies. The privacy policies that are available do not make information privacy practices transparent to users, require college-level literacy, and are often not focused on the app itself. Further research is warranted to address why privacy policies are often absent, opaque, or irrelevant, and to find a remedy.
The International Society for Stem Cell Research (ISSCR) task force that developed new Guidelines for the Clinical Translation of Stem Cells discusses core principles that should guide the responsible transition of basic stem cell research into appropriate clinical applications.
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