TAG ARCHIVES FOR data repository

2
Mar2020

PRIM&R endorses the OSTP efforts to improve the consistency of guidelines for best practices in long-term storage of data from federally funded research. We especially appreciate the current step of developing a proposed, common set of desirable characteristics of data repositories, because this kind of forward thinking has the potential to improves standards for both government and non-governmental data repositories alike. Read more

14
Feb2019

The 2018 Advancing Ethical Research Conference (AER18) was my second PRIM&R conference, and this year I came armed with questions for specific organizations and agencies. At the top of my list was a question regarding the 2015 NIH Genomic Data Sharing (GDS) Policy: When children’s data is submitted to a national genomic data sharing repository, such as the database of Genotypes and Phenotypes (dbGaP), what are the consent expectations when those subjects reach the age of majority?  Read more