Next-generation sequencing and global data sharing challenge many of the governance
mechanisms currently in place to protect the privacy of research participants. These …

There are an increasing number of population studies collecting data and samples to
illuminate gene-environment contributions to disease risk and health. The rising affordability …

Dynamic consent aims to empower research partners and facilitate active participation in the
research process. Used within the context of biobanking, it gives individuals access to …

Data sharing is increasingly regarded as an ethical and scientific imperative that advances
knowledge and thereby respects the contributions of the participants. Because of this and …

Spurred by a confluence of factors, most notably the decreasing cost of high-throughput
technologies and advances in information technologies, a number of population research …

Whole genome (DNA) sequencing is becoming part of routine care healthcare in England.
Genomic data are most useful when pooled with other patients' data, meaning that clinicians …

Although a few jurisdictions around the world have legislated in response to the
phenomenon of biobanking, the far more common response has been policy led with …

The United Kingdom's Data Protection Act 2018 introduces a new public interest test
applicable to the research processing of personal health data. The need for interpretation …

Currently, the ethics infrastructure–from medical and scientific training to the scrutiny of
ethics committees–focuses on trying to reform informed consent to do a job which it is simply …

The future of health research will be characterised by three continuing trends: rising demand
for health data; increasing impracticability of obtaining specific consent for secondary …