Request for Information

Request for Public Comments on DRAFT Supplemental Information to the NIH Policy for Data Management and Sharing: Protecting Privacy When Sharing Human Research Participant Data

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NIH is seeking public comments on draft supplemental information to the NIH Policy for Data Management and Sharing to address privacy considerations. This information is not intended to provide a guide for compliance with regulatory requirements, but is rather a set of principles, best practices, and points to consider for creating a robust framework for protecting the privacy of research participants when sharing data under the NIH Policy for Data Management and Sharing. After considering public comments on this draft supplemental information, NIH intends to issue revised supplemental information in 2022.

NIH Guide Notice NOT-OD-22-131.

How to Submit a Response

Comments must be submitted electronically using this form. Responses will be accepted through June 27, 2022.

Responses to this RFI are voluntary and may be submitted anonymously. You may also voluntarily include your name and contact information with your response. Other than your name and contact information, please do not include in the response any personally identifiable information or any information that you do not wish to make public. Proprietary, classified, confidential, or sensitive information should not be included in your response. After OSP has finished reviewing the responses, the unredacted responses may be posted to the OSP website.

To ensure consideration, responses must be submitted by: June 27, 2022, 11:59:59 EDT.

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*If submitting comments on behalf of another individual, please submit the name and function of that other individual.

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NIH seeks public comments on any aspect of the Draft Operational Principles for Protecting Participant Privacy When Sharing Scientific Data, Draft Best Practices for Protecting Participant Privacy When Sharing Scientific Data, and Draft Points to Consider for Designating Scientific Data for Controlled-Access. If you are commenting on a particular element or section (e.g., the Operational Principles), please identify the element or section on which you are commenting.

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Inquiries:

Please direct all inquiries via email to SciencePolicy@mail.nih.gov.