NIH Requests Information on Developing Consent Language for Future Use of Data and Biospecimens

Today, the National Institutes of Health (NIH) announced a Request for Information (RFI) on the utility and useability of Consent for Data and Biospecimen Sharing for Future Use: Points to Consider and Sample Language. NIH has heard from its stakeholders that there is a strong interest in sharing best practices for developing informed consent language that supports sharing and NIH has worked to develop points to consider and sample language to assist in this endeavor. NIH emphasizes that any use of the sample informed consent language would be completely voluntary and will not be required.

Stakeholder feedback on this resource is essential to ensure the resource is useful to the community. The NIH is interested in any gaps or additional components that should be included, input on the points to consider, and feedback on the specific language proposed in the informed consent sample language. NIH is also interested in input on any hurdles or barriers to the voluntary use of this document by the community.

To facilitate commenting, NIH has established a web portal. To ensure consideration, comments must be received no later than Sept. 29.

Questions may be sent to [email protected]