Gearing Up for 2023 Part II: Implementing the NIH Data Management and Sharing Policy – NIH Extramural Nexus
peter.suber's bookmarks 2022-05-13
"NIH has a long history of developing consent language and, as such, our team worked across the agency – and with you! – to develop a new resource that shares best practices for developing informed consents to facilitate data/biospecimen storage and sharing for future use. It also provides modifiable sample language that investigators and IRBs can use to assist in the clear communication of potential risks and benefits associated with data/biospecimen storage and sharing. In developing this resource, we engaged with key federal partners, as well as scientific societies and associations. Importantly, we also considered the 102 comments from stakeholders in response to a RFI that we issued in 2021.
As for our second resource, we are requesting public comment on protecting the privacy of research participants when data is shared. I think I need to be upfront and acknowledge that we have issued many of these types of requests over the last several months and NIH understands the effort that folks take to thoughtfully respond. With that said, we think the research community will greatly benefit from this resource and we want to hear your thoughts on whether it hits the mark or needs adjustment...."