The Juvenile Justice Professional's Guide to
Human Subjects Protection and the IRB Process
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Information Transfer Agreement
 
Research projects supported by Federal funds may lend data sets containing information identifiable to a private person to qualified individuals or agencies. The requester must submit an Information Transfer Agreement prior to receipt of these data. The agreement is a written certification that the requester is knowledgeable about 28 CFR Part 22 regulations and agrees to comply with them. The request for transfer of information should describe the general objectives of the project for which the information is requested and provide justification for all information requested in identifiable format. The request must also provide justification for conclusion that the project will not, either directly or indirectly, cause legal, economic, physical, or social harm to individuals whose identification is revealed in the transfer of information. The recipient of the data must also agree that:
  • Information identifiable to a private person will be used only for research and statistical purposes and will not be used or revealed except as allowed in the regulations.

  • Access to the requested data is limited to the recipient and his or her employees or subcontractors having a need in connection with the research for which the data were obtained. The individuals will be advised of and agree in writing to comply with all of the provisions of the regulations.

  • Knowingly and willfully using, re-transferring, re-disseminating, re-publishing any information contrary to the provisions of the agreement shall constitute a violation of these regulations, punishable by termination of the grant or contract and/or legal actions described in the regulations.

  • Adequate precautions will be taken to insure administrative and physical security of identifiable data and to preserve the confidentiality of personally identifiable information.

  • Project plans will be designed to preserve anonymity of private persons to whom the information relates, including, when appropriate, statistical disclosure methods.

  • Project finding and reports prepared for dissemination will not contain information which can reasonably be expected to be identifiable to a private person except as authorized under the regulations.

  • Upon completion of a research or statistical project the security of personally identifiable information shall be protected by complete physical destruction of all copies of the data files or the identifiable portions of them after a three-year required recipient retention period or as soon as authorized by law. Identifiers must be removed from data files and a secure name-code index must be maintained.

  • The Transfer of Information Agreement, signed by the requester, signifies that he or she is responsible for the data and will uphold the preservation of confidentiality consistent with the requirements of 28 CFR Part 22.

Implications for IRB Review
Agencies that release youth data files and researchers who utilize them are subject to all of the regulatory requirements of 28 CFR 22 that govern the use and release of research and statistical information. Youth data lending-agencies must provide potential data recipients with the policies, guidelines, and procedures that define their responsibilities for data security both during and after the research activities. Likewise, data recipients must submit research proposals to an IRB with sufficient information to demonstrate that the proposed study will comply with the lenders’ criteria for collecting, storing, using, transferring, reporting, and publishing youth data. The IRB reviews the research proposal before the research is conducted to ensure that the research plan includes assurances from the researcher that the lender’s criteria for privacy and confidentiality will be met along with a rationale and justification for doing so. The IRB review of first-time submissions and previously approved proposals is an on-going process to ensure confidentiality and privacy of youth data and that the risk of harm to youth who are research participants is minimized.

Youth who have previously provided research information deserve the same protection from risk and harm, as do youth who participate in primary data collection for research.

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