Confidentiality & Informed Consent

National Longitudinal Survey of Youth - 1979 Cohort

Confidentiality & Informed Consent

Institutional Review Boards

In addition to OMB review, the NLSY79 is reviewed and approved by an institutional review board (IRB) 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, the reviews are required under the policies of the universities. Obtaining approval from the IRBs involves completing 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.  Additional documentation includes 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. OMB must review all data collections for the NLSY79.

The NLSY79 project staff at The Ohio State University Center for Human Resource Research (CHRR) and at NORC obtain approval from their respective IRBs prior to the start of each round of data collection. Because each survey includes only an interview and no invasive medical procedures, the IRBs typically focus on respondent compensation, consent procedures, and confidentiality protections for special populations, such as incarcerated or disabled respondents. Prisons, schools, and other institutions in which NLSY79 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 NLSY79 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 NLSY79 program: 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 and its associated Child and Young Adult surveys. 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.

Survey interviewers are trained how to answer questions from respondents about how their privacy will be protected. Interviewers explain to potential respondents that all the employees who work on the surveys at BLS, NORC, and 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 in which 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 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, 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.  The information provided to those agencies does not include respondents' personal identities, however.

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 the safeguards in place to protect respondent confidentiality, researchers would have far less data available to work with than they currently enjoy.

Contractors' Role in Maintaining Respondent Confidentiality. BLS, NORC, and CHRR are responsible for following the Federal requirements and maintaining their own security procedures. As mentioned earlier, all officers, employees, and agents of BLS are required to sign agreements 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. Each contractor has in place procedures to ensure that the data are secure at each point in the survey process. (See the Data Handling section for more information.)