Confidentiality & Informed Consent

National Longitudinal Survey of Youth - 1979 Cohort

Confidentiality & Informed Consent

Survey Procedures

Like all contractor staff, field interviewers are agents of BLS and are required to sign the BLS agent agreement before working on the NLSY79. All interviewers also must undergo a background check when they are hired. Confidentiality is stressed during training and enforced at all times. Field interviewers receive specific instructions in their reference manuals to remind them of the appropriate procedures when locating or interacting with respondents or contacts.

At the end of each interview, interviewers ask respondents to provide information on family members, friends, or neighbors who can be contacted if the interviewers are unable to locate the sample member in a subsequent round of interviews. The interviewers then use those contacts to help in locating sample members who have moved. When contacting a sample member's relatives, friends, or neighbors about the sample member's whereabouts, interviewers never disclose the name of the survey they are conducting. They are instructed to maintain the confidentiality of any relative, friend, or neighbor who provides information about the sample member's whereabouts.

Answering machines can pose problems when interviewers are contacting sample members because it is difficult to confirm that the interviewer is calling a sample member's correct telephone number or that other household members will not hear the message. For those reasons, interviewers are instructed not to leave messages on answering machines.

When interviewers contact the appropriate household, they ask to speak with the sample member. Interviewers introduce themselves and state the purpose of the call by saying that they are from the National Opinion Research Center at the University of Chicago and are calling concerning a national survey. The name of the survey is not disclosed to anyone but the sample member.

Special Situations

The NLSY79 is a general population survey and includes a variety of sample members with special circumstances, such as incarcerated individuals, respondents in the military, other institutionalized persons, disabled persons, those with limited English proficiency, and so forth.

Incarcerated Respondents. Incarcerated respondents constitute the largest group requiring special accommodations. The first challenge with incarcerated respondents is contacting them to schedule an interview. NLS interviewers must contact the prison administration to arrange for an interview, but the interviewers cannot legally reveal to the prison administration that the prisoner previously had participated in the survey without first obtaining the written, informed consent of the prisoner to reveal that information (Note: Data were incomplete for 2004 due to confidentiality concerns regarding inmate's participation in the NLSY79. A protocol was established for round 22 of the NLSY79). 

The following steps are used for obtaining prisoners' consent:

  1. Prisoners are first sent a letter reminding them about their previous participation in a NORC survey, but, in case the mail is monitored by prison staff, the letter does not name the survey or BLS so as not to reveal the prisoner's participation. The letter encourages the prisoner to participate in the upcoming round of the survey.  It explains that NORC staff needs to set up an interview through the prison administration but that NORC cannot tell the prison administration about the prisoner's participation without the prisoner's informed consent.  he letter then asks the prisoner to request a consent form by signing and dating an enclosed form letter and mailing it to NORC in a pre-addressed, postage-paid envelope.  The letter reminds the prisoner that the mail at the institution may be monitored and explains that the consent form that NORC will send the prisoner will state the prisoner's name and the name of the survey. The letter emphasizes that, by returning the enclosed form letter, prison management or staff may learn that the prisoner is a participant in the survey.
  2. If the prisoner chooses to send the form letter to NORC, NORC then sends the prisoner a cover letter and a consent form that names the specific survey.  The prisoner is asked to sign the consent form and mail it to NORC in a pre-addressed, postage-paid envelope. Once NORC has received the signed consent form, NORC staff can contact the prison to request permission to interview the prisoner and learn about any restrictions that the prison administration may impose.
  3. If the prison administration permits an interview and a date and time have been scheduled for the interview, NORC mails another letter to the prisoner. This letter serves two purposes. First, it tells the prisoner when the interview will take place. Second, it informs the prisoner in writing that the interview very likely will be monitored by prison that it is important to tell the prisoner in writing.

Once all of these steps are complete, the prisoner finally can be interviewed, but the NLS program takes additional steps to minimize the risk that prisoners might reveal illegal or illicit behavior in the presence of prison staff during the course of the interview. 

As described later in this chapter, such sensitive questions are asked in the self-administered portions of the NLSY79. During these portions of the survey, the typical protocol for a respondent who is not incarcerated involves the interviewer turning the laptop computer around to enable the respondent to read the questions to him or herself and enter the answers directly into the laptop computer without the interviewer knowing the responses. (In fact, the interviewer does not even know which questions the respondent answered). In some relatively low-security correctional facilities, such as some county jails and halfway houses, this protocol still would be possible. In higher security facilities, the prison administrators would not permit the prisoner to touch the computer, so the questions either would have to be read to the respondent or skipped altogether.

NLS program staff have identified the questions that could be considered even moderately sensitive or risky for the prisoner to answer out loud. Given this examination of these questions, the NLS program has adopted the following protocol for administering sensitive questions to prisoners:

  1. At the very beginning of the interview, the interviewer will indicate in the survey instrument whether a respondent is in a correctional facility of any kind and, if so, whether the facility permits the prisoner to touch the laptop and enter responses to the self-administered questions. For Federal prisons, the interviewer assumes that the prisoner is not permitted to touch the laptop.
  2. If the facility permits the prisoner to enter responses to the self-administered questions directly into the laptop, then the full set of questions, including all of the sensitive questions, would be administered.
  3. If the facility does not permit the prisoner to enter responses directly into the laptop, or if the interview is conducted over the telephone rather than in person, all survey questions will be asked orally by the interviewer, but the instrument is programmed to skip sensitive questions in which the prisoner might be asked about illegal or illicit behavior.

Military Respondents. NLSY79 respondents who are in the military tend to be very cooperative and willing to participate in the surveys, but it sometimes can be difficult to locate and contact them, particularly if they are stationed outside the United States. It sometimes is necessary to seek the help of military or civilian staff in the Department of Defense to locate and contact military respondents, but NLS program staff first must obtain the military member's written, informed consent to reveal to Department of Defense staff that he or she previously had participated in the survey and is willing to be contacted to participate in future rounds of the survey.

Respondents with Limited English Proficiency. Some respondents lack fluency in English and are more comfortable using another language. It is not possible to accommodate all of the different languages other than English that respondents might speak, but the NLSY79 historically has made special arrangements for respondents and their parents who speak Spanish, the most commonly spoken language other than English among respondents. NORC staff members translate advance letters and other informational materials into Spanish to enable respondents and the parents of minor respondents to provide their informed consent based on information that is written in the language that they understand best. Survey questionnaires also have been translated into Spanish to ensure that the surveys are administered consistently, an alternative much preferable to having Spanish-speaking interviewers translate the English-language questionnaire during the interview. The first 20 rounds of the NLSY79 included a Spanish version of the questionnaire, but, because the number of respondents who speak only Spanish has continued to decline, it no longer is cost-effective to continue programming a computerized Spanish questionnaire. For that reason, Spanish questionnaires are not used starting with round 21 (2004) of the NLSY79. Advance letters and other informational materials still are available in Spanish, however.

Sensitive Topics. The NLSY79 has included questions on income and assets, religion, relationships with parents and other family members, sexual experiences, abortion, drug and alcohol use, criminal activities, homelessness, runaway episodes, and other topics that are potentially sensitive for respondents to discuss. Respondents are advised at the start of the interview that they can choose not to answer any questions that they prefer not to answer. During training, interviewers undergo exercises to teach them how to allay the concerns of respondents about answering sensitive questions and encourage them to respond.  Interviewers are instructed not to coerce respondents into answering questions that they prefer not to answer, however.

All questions in the NLSY79 are read to the respondent by an interviewer. The respondent then provides an answer, and the interviewer records that answer on a laptop computer. For especially sensitive questions, some respondents might be reluctant to answer truthfully--or at all--if they have to tell an interviewer their answers, even though interviewers can face criminal and civil penalties if they disclose the respondents' identities or answers to anyone not authorized to receive that information.

Guidelines for E-mailing Sample Members. At the end of each interview, respondents are asked to provide information that will help interviewers contact them during subsequent rounds of the surveys. In addition to the information collected about relatives, friends, or neighbors, interviewers also obtain the e-mail addresses of sample members who have them. During round 20 of the NLSY79 (conducted during 2002), the NLS contractors began using e-mail as a means to contact a small number of sample members who were hard to reach by other means. The following guidelines were enacted to ensure confidentiality:

  1. The name of the survey is not contained in the subject line or text of the e-mail message. Some respondents may share the use of an e-mail address with other household members, so the survey name is omitted from the message to prevent other household members from learning the specific name of the survey.
  2. E-mail is sent from one main address. Field interviewers are not permitted to use their individual e-mail accounts to contact respondents.

Respondents Knowing Respondents. One feature of the sample design in the NLSY79 is that there often are multiple respondents within the same original household, either siblings or, occasionally, spouses. It obviously is not possible in these cases to prevent family members from knowing that a relative is in the survey sample, but interviewers take steps to ensure that each respondent's answers remain private and are not revealed to other family members.

Consent from NLSY79 Respondents. Respondents are able to review the confidentiality and consent information presented in the advance letter. The respondent gives verbal consent to participate at the beginning of the interview.