Protecting Participant Privacy When Sharing Scientific Data

Responsible scientific data sharing practices promote both effective data stewardship and protection of human research participant privacy. Learn about how to protect the privacy of human research participants when sharing data under NIH policies.

Principles and Best Practices for Protecting Participant Privacy

This page provides a set of principles and best practices for creating a robust framework for protecting the privacy of research participants when sharing data under the NIH Policy for Data Management and Sharing (DMS).

Designating Scientific Data for Controlled Access

This page offers guidance for considering whether to add another layer of protection to datasets by sharing data through controlled access repositories.

Considerations for Obtaining Informed Consent

Get resources and template language on obtaining informed consent for secondary research with data and biospecimens and for genomic research activities.

Considerations for Researchers Working with AI/AN Communities

Understand some relevant considerations and best practices for developing partnerships with American Indian/Alaska Natives through the development and implementation of research studies.

The NIH-Lacks Family Agreement

Learn more about NIH expectations for HeLa cell whole genome sequence (DNA or RNA) data submission and access under the NIH-Lacks Family Agreement.