Executive summary Alzheimer's disease (AD) is the leading cause of dementia, and
because the primary risk factor for AD is old age, the prevalence of the disease is increasing …

Background Innovations in technology have contributed to rapid changes in the way that
modern biomedical research is carried out. Researchers are increasingly required to …

Dynamic consent (DC) was originally developed in response to challenges to the informed
consent process presented by participants agreeing to 'future research'in biobanking. In the …

Abstract Background: Michigan's BioTrust for Health, a public health research biobank
comprised of residual dried bloodspot (DBS) cards from newborn screening contains over 4 …

With one million people treated every 36 hours, routinely collected UK National Health
Service (NHS) health data has huge potential for medical research. Advances in data …

Biobanks are made all the more valuable when the biological samples they hold can be
linked to health information collected in research, electronic health records, or public health …

Fulfilling the promise of the genetic revolution requires the analysis of large datasets
containing information from thousands to millions of participants. However, sharing human …

We interviewed 70 healthy volunteers to understand their choices about how the information
in their health record should be shared for research. Twenty-eight survey questions captured …

The practice and development of modern medicine requires large amounts of data,
particularly in the domain of cancer. The future of personalized medicine lies neither with …

Dynamic consent forms a comprehensive, tailored approach for interacting with research
participants. We conducted a survey study to inquire how research participants evaluate the …