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

  • Funding Type:
    Comment Opportunities
  • Opportunity From:

    Office of The Director, National Institutes of Health

Opportunity Description:

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 issues revised supplemental information in 2022.

Background

Effective data stewardship and protection of human research participant (hereinafter “participant”) privacy are achieved in tandem through responsible scientific data sharing practices. Accordingly, NIH has developed supplemental information to the NIH Policy for Data Management and Sharing (DMS Policy) to assist stakeholders in achieving this goal by establishing 1) operational principles for protecting participants’ privacy when sharing scientific data, 2) best practices for implementing these principles, and 3) points to consider for designating scientific data for controlled access. This supplemental information was developed in response to and informed by comments on the draft DMS Policy requesting further clarity and direction for researchers and their institutions about NIH’s principles and preferred practices regarding privacy.

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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