Confidentiality & Informed Consent

National Longitudinal Survey of Youth - 1997 Cohort

Confidentiality & Informed Consent

Institutional Review Boards

In addition to OMB review, the NLSY97 is reviewed and approved by the institutional review boards (IRBs) at the institutions that manage and conduct the surveys under contract with BLS. Those institutions are The Ohio State University and NORC at the University of Chicago. BLS and OMB do not require these reviews; rather, they are required under the policies of the universities. 

Obtaining IRB approval includes the following parts:

  • completion of a form signed by the Principal Investigator, providing a summary of the research project, and submitting a description of the consent procedures and forms used in the survey. 
  • submission of a copy of any materials used to recruit respondents, a detailed summary of the survey questionnaire, and any other information regarding the risks to humans of participating in the survey
  • application for approval prior to the start of each round of data collection
  • a general focus by the IRBs on respondent compensation, consent procedures, and confidentiality protections for special populations (such as incarcerated respondents). Note: IRBs also focus on obtaining information about the potential risks to participants, which is particularly relevant for medical studies. Although the NLSY97 has included health-related topics, information about these topics has been obtained only through questions asked of respondents, rather than through any medical exams or procedures. As such, NLSY97 respondents bear little to no risk in participating.

Prisons, schools, and other institutions where NLS sample members may reside often request the IRB approval statement and application as evidence that appropriate procedures are being followed and to judge whether to permit NLS interviewers to have access to individuals for whom the institutions are responsible.

Federal Laws

Two Federal laws govern policies and procedures for protecting respondent confidentiality and obtaining informed consent in the NLSY97:  the Privacy Act of 1974 and the Confidential Information Protection and Statistical Efficiency Act (CIPSEA) of 2002.

The Privacy Act and CIPSEA. These two acts protect the confidentiality of participants in the NLSY79, its associated Child and Young Adult surveys, and the NLSY97. CIPSEA protects the confidentiality of participants by ensuring that individuals who provide information to BLS under a pledge of confidentiality for statistical purposes will not have that information disclosed in identifiable form to anyone not authorized to have it. In addition, CIPSEA ensures that the information respondents provide will be used only for statistical purposes. While it always has been the BLS policy to protect respondent data from disclosure through the Privacy Act and by claiming exemptions to the Freedom of Information Act, CIPSEA is important because it specifically protects data collected from respondents for statistical purposes under a pledge of confidentiality. This law strengthens the ability of BLS to assure respondents that, when they supply information to BLS, their information will be protected. In addition, CIPSEA includes fines and penalties for any knowing and willful disclosure of specific information to unauthorized persons by any officer, employee, or agent of BLS. Since the enactment of the Trade Secrets Act and the Privacy Act, BLS officers, employees, and agents have been subject to criminal penalties for the mishandling of confidential data, and the fines and penalties under CIPSEA are consistent with those prior laws. CIPSEA now makes such fines and penalties uniform across all Federal agencies that collect data for exclusively statistical purposes under a pledge of confidentiality.

NLSY interviewers explain federal policies regarding confidentiality and consent in the following manner:

  • Interviewers explain to potential respondents that all the employees who work on the surveys at BLS, NORC, and The Ohio State University's Center for Human Resource Research (CHRR) are required to sign a document stating that they will not disclose the identities of survey respondents to anyone who does not work on the NLS program and is therefore not legally authorized to have such information. In fact, no one at BLS has access to information about respondents' identities, and only a few staff members at NORC and CHRR who need such information to carry out their job duties have access to information about respondents' identities.
  • Interviewers also explain that the answers respondents provide will be made available to researchers at BLS and other government agencies, universities, and private research organizations, but only after all personal identifiers-such as names, addresses, Social Security numbers, and places of work-have been removed. In addition, the publicly available data files exclude any information about the states, counties, metropolitan statistical areas, and other more detailed geographic locations where respondents live, making it much more difficult to infer the identities of respondents.
  • Respondents are told that some researchers are granted special access to data files that include geographic information, but only after those researchers undergo a thorough application process at BLS and sign a written agreement making them official agents of the BLS and requiring them to protect the confidentiality of respondents. In no case are researchers provided with information on the personal identities of respondents.
  • Finally, because the reference in the questions and answers to the National Archives and Records Administration and the General Services Administration may be confusing to some potential respondents (because those Federal agencies are not involved in the administration of the surveys), interviewers explain to respondents that NLS data and materials will be made available to those agencies because they are responsible for storing the Nation's historical documents, but that the information provided to those agencies does not include respondents' personal identities.

The organizations involved in the NLS program continuously monitor their security procedures and improve them when necessary. Protecting the privacy of NLS respondents entails considerable responsibilities for BLS, the organizations that conduct the surveys for BLS, and the researchers who use the data. Indeed, researchers in particular may become frustrated that they cannot obtain access to all the data that they want or that they must undergo a long review process at BLS to obtain some types of data. It is important to remember, however, that protecting respondent confidentiality must remain paramount. Any action that might jeopardize respondent confidentiality and erode the confidence of respondents could harm response rates in the NLS program and in other government or academic surveys. Thus, without safeguards in place to protect respondent confidentiality, researchers would have far less data available to work with than they currently enjoy.