Data Sharing

Guidelines

INBOUND DATA RECEIVED FOR RESEARCH PURPOSES

  1. If the data comes to MIT with a previously negotiated Data Use Agreement (DUA) then the MIT researchers must follow the terms of the DUA.
  2. If the data comes to MIT with or without a previously negotiated DUA then:
    1. COUHES review is required if the data contains personal identifiers , or was collected specifically for the research study being contemplated at MIT
    2. If none of the conditions in 2.a. are met then it is not “human subjects research” and COUHES review is not required.

 

OUTBOUND DISCLOSURE OF DATA TO RESEARCHERS

  1. If the data to be shared with an outside researcher has already been made public, then there is no need for COUHES review or a DUA with the outside researchers.
  2. If data to be shared with an outside researcher is de-identified but not public, then:
    1. COUHES will need to review the consent form under which the data was gathered to ensure it permits sharing for the purposes envisaged by the research.
    2. In addition, a DUA will need to be in place between MIT and the receiving institution.
  3. If the data to be shared with an outside researcher is nonpublic and contains personally identifiable information then:
    1. COUHES review of the full protocol proposed by the outside researcher is required. However, COUHES ordinarily will cede jurisdiction for review to the IRB of the receiving institution.
    2. COUHES will review the consent form under which the data was gathered to ensure it permits sharing for the purposes envisaged by the research.
    3. In addition, a DUA will need to be in place between MIT and the receiving institution.