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Managing Research Data from Start to Finish: Human Data

This subject guide provides information on how to manage research data.

Sharing Human Subjects Data Considerations

Researchers should:
  • Communicate plans in consent documents for future sharing and use of scientific data
  • Evaluate the privacy and confidentiality protections needed for sharing data from research participants. Unless a participant consents to sharing identifiable data, it should generally be shared only in a de-identified format.
  • Consider justifiable limitations to sharing data. These include (but are not limited to) uses of the data as described in the consent form and when sharing would compromise subject privacy or safety.

For more information, see NIH’s supplement to the DMS policy Protecting Privacy When Sharing Human Research Participant Data and the webpage Sharing Data from Human Participants