TAG ARCHIVES FOR data repository

2
Mar2020

PRIM&R’s comments to the OSTP on Repository Management and Data Sharing

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2 Mar
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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

Minding the (db)GaP: Age of Majority and the NIH’s GDS Policy

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14 Feb
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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