CHAPTER 9: CONFIDENTIALITY AND CONSENT 147

CONFIDENTIALITY AND CONSENT

1

Providing information about risks is particularly relevant for

medical studies in which participants could suffer adverse reactions to drugs or treatments. Although the National Longitudinal

Surveys have 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, NLS respondents bear no risk of participating. 2

 Surveys that are funded through Federal grants to universities

and other organizations generally do not have to undergo this OMB

Like all surveys, the National Longitudinal Surveys (NLS)

rely on the cooperation of respondents to provide relevant,

accurate, and timely information that researchers and

policymakers can use to understand economic and social

phenomena. At a minimum, securing cooperation requires

survey administrators to explain clearly to potential respondents the uses of the survey and the importance of each

respondent’s information to the success of the survey. Ethical survey practice entails more than just convincing members of the survey sample to participate, however. Sample

members need to be informed about how their confidentiality will be protected, how their information will be used,

whether participation is voluntary or mandatory, the estimated amount of time it will take to complete the survey, and

any risks of participating.1 After survey administrators provide this and other relevant information to potential respondents, those potential respondents can provide what is called

their “informed consent” to participate.

The NLS program has established a variety of procedures for ensuring respondent confidentiality and obtaining

informed consent. These procedures comply with Federal

law and the policies and guidelines of the U.S. Office of

Management and Budget (OMB), the U.S. Bureau of Labor

Statistics (BLS), and the U.S. Census Bureau. This chapter

describes the process of protecting respondent confidentiality and gaining informed consent in the National Longitudinal Survey of Youth 1979 (NLSY79) and its associated Child

and Young Adult surveys, the National Longitudinal Survey

of Youth 1997 (NLSY97), and the now-discontinued NLS original cohorts of Mature Women, Young Women, Older Men,

and Young Men.

OMB procedures

OMB is responsible for setting overall statistical policy among

Federal agencies. For example, OMB has established standards on collecting information about race and ethnicity, industry, occupation, and geographic location. OMB also has

established standards on the manner and timing of data releases for such principal economic indicators as the gross

domestic product, the national unemployment rate, and the

Consumer Price Index. In addition, OMB sets standards on

whether and how much respondents to Federal surveys can

be paid for their participation, an issue of particular concern

in the NLS program.

Another of OMB’s responsibilities is to review the procedures and questionnaires that Federal agencies use in collecting information from 10 or more respondents. Federal

data collections reviewed by OMB include administrative

data, such as the tax forms that the Internal Revenue Service

requires individuals and corporations to complete. OMB

also reviews all censuses and surveys that Federal agencies

conduct, either directly or through contracts.2

OMB examines a variety of issues during these reviews,

such as:

z The amount of time (and money, if any) that the agency

collecting the information estimates respondents will

spend to provide the requested information

z The agency’s efforts to reduce the burden on respondents of providing the information

z The purpose and necessity of the data collection, including whether it duplicates the objectives of other

Federal data collections

z The ways in which the agency obtains informed consent from potential respondents to participate in the data

review process unless the grantee in turn contracts with a Federal

statistical agency such as the Census Bureau to collect the data. In

place of OMB review, surveys funded through grants typically

must undergo a competitive peer-review process established by

the agency administering the grant, and that review process examines the procedures for maintaining respondent confidentiality and

obtaining the informed consent of the participants. In addition,

such surveys also typically are scrutinized by an institutional review board established at the grantee’s institution.
148 CHAPTER 9: CONFIDENTIALITY AND CONSENT

3 In the NLS program, OMB must review all data collections for the

NLSW, NLSY97, NLSY79, and NLSY79 Child survey. For the

NLSY79 Young Adult survey, OMB review is required only for

respondents under age 21. Interviews with Young Adult respondents age 21 and older are not subject to OMB review because

those interviews are not funded through the contract with BLS.

Instead, those interviews are funded through a competitive grant

from the National Institute of Child Health and Human Developcollection

z The policies and procedures that the agency has established to ensure respondent confidentiality

z The statistical methods used to select representative

samples, maximize response rates, and account for

nonresponse

z The payment of money or the giving of gifts to respondents

z The questionnaire itself, including the quality of its design and whether it includes questions that respondents

may regard as sensitive

These OMB reviews are very thorough. From the time an

agency prepares an OMB information collection request until

the time OMB approves the data collection, the process typically takes 7 months or more and includes multiple layers of

review within the agency and at OMB. These reviews are

helpful in improving survey quality and ensuring that agencies treat respondents properly, both in terms of providing

them with information about the data collection and its uses

and protecting respondent confidentiality.

The review process also provides the general public

with two opportunities to submit written comments about

the proposed data collection. The agency conducting the

data collection publishes a notice in the Federal Register

describing the data collection and inviting the public to request copies of the information collection request, questionnaires, and other materials that the agency eventually will

submit to OMB. The public is invited to submit written comments to the agency sponsoring the data collection within

60 days from the time the Federal Register notice is published. In the history of the NLS program, the public very

rarely has submitted comments to BLS, but when comments

are received, they are summarized in the information collection request that ultimately is submitted to OMB.

After the request has been submitted to OMB, the

agency sponsoring the data collection then publishes a second notice in the Federal Register and invites the public to

submit comments directly to OMB within 30 days. Again, in

the history of the NLS program, the public very rarely, if ever,

has submitted comments to OMB.

Once OMB has received the information collection request, they have 60 days to review the package, ask followup questions, suggest changes (or, occasionally, insist upon

changes) to the survey questionnaire or procedures, and

ultimately grant approval.

After OMB grants approval, the sponsoring agency can

begin contacting potential respondents and collecting information from them. The process of contacting potential NLS

respondents begins with sending them an advance letter

several weeks before interviews are scheduled to begin. The

advance letter serves several purposes. The obvious purpose is to inform respondents that an interviewer will be

contacting them soon, but BLS and the organizations that

conduct the surveys for BLS also use the letter to thank

respondents for their previous participation and to encourage them to participate in the upcoming round. Another

important objective of the advance letter is to remind respondents that their participation is voluntary and to tell

them how much time the interview is expected to take. The

letter also explains to respondents how the data will be used

and how respondents’ confidentiality will be protected by

BLS and the organizations that conduct the surveys for BLS.

An example of an advance letter is shown in figure 9.1.

Institutional review boards

In addition to OMB review, each of the National Longitudinal Surveys 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 the National Opinion

Research Center (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.3

The NLS 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

ment to The Ohio State University Center for Human Resource

Research. Virtually the same procedures are used to conduct the

NLSY79 Child and Young Adult interviews for respondents age 21

and older as are used for younger respondents, so OMB presumably would approve the data collection if asked to do so. Data

collection for the NLSY79 Young Adults age 21 and older is subject

to the approval of the institutional review boards at The Ohio State

University and the University of Chicago.
CHAPTER 9: CONFIDENTIALITY AND CONSENT 149

You are part of something truly great: the

National Longitudinal Survey of Youth

1979.

Few people have the opportunity to make such a great and lasting contribution.

The study is a valuable tool for legislation and research. The study is also a

moving picture of your life. And because you represent many others your

contribution becomes a “living” record of the people of this nation... a

record that may be available for generations to come.

Those of us who work on the study are proud to work with you. We are a team of

researchers who carefully prepare the content of the study to make sure it continues to be so

valuable to educators and government policymakers; professionals who prepare and complete

materials for the study; and a staff of interviewers who work tirelessly to contact you.

We all appreciate your continued participation and dedication to this study, which is

sponsored by the Bureau of Labor Statistics of the U.S. Department of Labor. As a small

thank you, we have included a calendar magnet to help you keep track of important dates.

We remain extremely grateful to you for your continuing participation and look forward to

speaking with you again in 2004. The average interview lasts 60 minutes. As always, the

information you provide is protected by law.

One of our interviewers from NORC at the University of Chicago will be contacting you in

the coming weeks to set up a convenient appointment for your interview. In the meantime,

if you have any questions about the study, please feel free to call us toll free at 1-877-853-

5908. The questions and answers shown on the back of this letter provide further

information about this survey and your confidentiality.

We look forward to talking with you soon! And again,

Figure 9.1 NLSY79 round 21 advance letter
150 CHAPTER 9: CONFIDENTIALITY AND CONSENT

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 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

Three Federal laws govern policies and procedures for protecting respondent confidentiality and obtaining informed

consent in the NLS program: the Privacy Act of 1974, the

Confidential Information Protection and Statistical Efficiency

Act (CIPSEA) of 2002, and Title 13 of the United States Code.

The Privacy Act is discussed in the section on the NLSY79

and NLSY97 cohorts, as well as in the section on the NLS

original cohorts. CIPSEA, which applies to all data collected

by Federal agencies under a pledge of confidentiality for

exclusively statistical purposes, also is discussed in both

sections. Title 13 applies only to the NLS original cohorts

and is described in that section of this chapter.

NLSY79 and NLSY97 cohorts

The Privacy Act and CIPSEA 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.

BLS policy requires that advance letters sent to potential respondents in these surveys include on the back of the

letter the series of questions and answers about confidentiality and other survey topics shown in figure 9.2. In addition

to these written questions and answers, 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
CHAPTER 9: CONFIDENTIALITY AND CONSENT 151

Figure 9.2. Confidentiality and reporting burden information in the NLSY97 advance letter

WHY IS THIS STUDY IMPORTANT?

Thanks to your help, policymakers and researchers will have a better understanding of the work experiences,

family characteristics, health, financial status, and other important information about the lives of people in your

generation. This is a voluntary study, and there are no penalties for not answering questions. However,

missing responses make it more difficult to understand the issues that concern people in your community and

across the country. Your answers represent the experiences of hundreds of other people your age. We hope we

can count on your participation again this year.

WHO AUTHORIZES THIS STUDY?

The sponsor of the study is the U.S. Department of Labor, Bureau of Labor Statistics. The study is authorized

under Title 29, Section 2, of the United States Code. The Center for Human Resource Research at The Ohio

State University and the National Opinion Research Center at the University of Chicago conduct this study

under a contract with the Department of Labor. The U.S. Office of Management and Budget (OMB) has

approved the questionnaire and has assigned 1220-0157 as the study’s control number. This control number

expires on October 31, 2007. Without OMB approval and this number, we would not be able to conduct this

study.

WHO SEES MY ANSWERS?

We want to reassure you that your confidentiality is protected by law. In accordance with the Confidential

Information Protection and Statistical Efficiency Act of 2002, the Privacy Act, and other applicable Federal laws,

the Bureau of Labor Statistics, its employees and agents, will, to the full extent permitted by law, use the

information you provide for statistical purposes only, will hold your responses in confidence, and will not

disclose them in identifiable form without your informed consent. All the employees who work on the survey at

the Bureau of Labor Statistics and its contractors must sign a document agreeing to protect the confidentiality

of your data. In fact, only a few people have access to information about your identity because they need that

information to carry out their job duties.

Some of your answers will be made available to researchers at the Bureau of Labor Statistics and other government agencies, universities, and private research organizations through publicly available data files. These

publicly available files contain no personal identifiers, such as names, addresses, Social Security numbers, and

places of work, and exclude any information about the States, counties, metropolitan areas, and other, more

detailed geographic locations in which survey participants live, making it much more difficult to figure out the

identities of participants. Some researchers are granted special access to data files that include geographic

information, but only after those researchers go through a thorough application process at the Bureau of Labor

Statistics. Those authorized researchers must sign a written agreement making them official agents of the

Bureau of Labor Statistics and requiring them to protect the confidentiality of survey participants. Those

researchers are never provided with the personal identities of participants. The National Archives and Records

Administration and the General Services Administration may receive copies of survey data and materials

because those agencies are responsible for storing the Nation’s historical documents.

HOW MUCH TIME WILL THE INTERVIEW TAKE?

Based on preliminary tests, we expect the average interview to take about 60 minutes. Your interview may be

somewhat shorter or longer depending on your circumstances. If you have any comments regarding this study

or recommendations for reducing its length, send them to the Bureau of Labor Statistics, National Longitudinal

Surveys, 2 Massachusetts Avenue NE., Washington, DC 20212.
152 CHAPTER 9: CONFIDENTIALITY AND CONSENT

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 of this chapter for more information.)

Like all contractor staff, field interviewers are agents of

BLS and are required to sign the BLS agent agreement before

working on the NLSY79 or NLSY97. 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 or the parent of a

sample member under age 18. 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 and NLSY97 are general

population surveys and include 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.

The process of obtaining prisoners’ consent begins by sending them a letter. The letter reminds prisoners

that they have participated previously 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. The 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.

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.

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
CHAPTER 9: CONFIDENTIALITY AND CONSENT 153

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 staff. That

fact probably is obvious to any prisoner, but NLS staff feels

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. This concern generally is not an

issue for the NLSY79, which has not asked questions on

such sensitive topics in recent years, but it is an issue with

the NLSY79 Child and Young Adult surveys and with the

NLSY97.

As described later in this chapter, such sensitive questions are asked in the self-administered portions of the

NLSY97. 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, 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. NLS 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 and NLSY97 historically have

made special arrangements for respondents and their parents who speak Spanish, the most commonly spoken language other than English among respondents. 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 6 rounds of the

NLSY97 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 7 (2003-04) of the NLSY97. Advance letters and other informational materials still are available in Spanish, however. The main NLSY79 questionnaire

continues to be translated into Spanish.

Sensitive subjects. The NLSY79 and NLSY97 have 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 and most questions in the
154 CHAPTER 9: CONFIDENTIALITY AND CONSENT

NLSY97 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.

Obviously, it is important that respondents answer all

questions truthfully, so the NLSY97 includes a self-administered portion of the questionnaire to reduce the potential

reluctance to respond to sensitive questions. In this mode

of data collection, the interviewer hands the laptop computer to the respondent and asks the respondent to read the

questions and enter his or her responses with the keyboard.

Sometimes, respondents have literacy problems or disabilities that prevent them from reading the questions on the

computer screen. For this reason, the interviewer also provides the respondent with a set of headphones that plug

into the computer and enable the respondent to listen to a

computer-generated recording of someone reading the questions. While the respondent completes this computer-assisted self-interview, the interviewer does not see the

respondent’s answers and, in fact, does not even see what

questions the respondent is answering. Even in the selfadministered portion of the survey, however, respondents

still have the option not to respond to individual questions.

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 5 of the NLSY97 (conducted during 2001-2002) and 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 sample members

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 NORC address. Field interviewers are not permitted to use their individual e-mail accounts to contact sample members.

Respondents knowing respondents. One feature of the

sample design in the NLSY79 and NLSY97 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 NLSY97 respondents and parents. Because

of the young ages of this cohort in the initial survey years,

additional measures were taken to obtain informed consent

from minors and their parents. Consent procedures for

rounds 1 through 5 of the NLSY97 included the following

protocol:

1. For respondents age 17 and younger, parents were asked

to complete a written Parental Permission to Interview

Youth form prior to the youth’s completion of the interview. Respondents themselves were asked to complete

a written Youth Assent to Participate form prior to completing the interview. This protocol also applied to respondents whose interviews were completed by a proxy.

(Proxy interviews are conducted in cases in which a disabled respondent could complete the interview only with

the assistance of a parent, guardian, or other caretaker.)

Respondents who were age 17 or younger and had attained independence or were considered “self-supportive” were not required to have a parent complete a

permission form.

2. Whether or not a parent permission form was required,

all youths, regardless of age, signed a consent form prior

to completing the interview.

Through the completion of round 5 data collection in May

2002, a significant proportion of NLSY97 sample members

required signed parental permission because they had not

yet reached age 18 or established legal independence.

As of January 1, 2003, all NLSY97 sample members were

at least age 18. Beginning in round 6, consent procedures

changed to align with procedures of other large surveys of

adults. Respondents age 18 and older now verbally consent

prior to completing the interview. They read a consent statement similar to those used in previous rounds, but they no

longer need to sign any documents.4

 For incarcerated respondents and respondents whose interviews are completed

by proxy, the NLS program continues to require signed consent as an additional safeguard against possible coercion.

4 Data collection for round 6 began in November 2002, when approximately 250 respondents were still age 17. Interviews with

these respondents were postponed until January 2003, when all

had reached age 18.
CHAPTER 9: CONFIDENTIALITY AND CONSENT 155

Consent from NLSY79 respondents and Young Adults age

18 and older. 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.

Children of the NLSY79, parental consent. In the Children

of the NLSY79, the biological children of female NLSY79

sample members are assessed, and the mothers are interviewed about their children. Children ages 4 to 14 are given

a variety of assessments depending on their age; children

younger than age 4 are not assessed. The mother’s consent

is required for these assessments to be administered. The

field interviewer asks the mother to sign a consent form. The

back of the parental permission form has the questions and

answers shown in figure 2 of this chapter. In the rare cases in

which the child is not assessed but the mother is interviewed

by telephone about the child, the mother gives verbal consent over the telephone. The field interviewer signs the consent form and returns it to the central office of the NLS

contractor for secure storage.

Children ages 10 to 14 are asked a series of questions

through a self-administered questionnaire on a variety of

potentially sensitive topics. After the mother verbally agrees

that the child may answer these questions, the interviewer

reads a consent statement to the child and obtains verbal

consent. This consent statement is similar to the statement

used with older respondents but has been cognitively tested

and revised to ensure that it is appropriate for preteens.

Young Adults under age 18, parental consent. Parental permission is required for young adults ages 15 to 17 who undergo an interview modeled on the questionnaire used in the

main NLSY79. For telephone interviews, the field interviewer

asks to speak to the parent and requests permission from

that parent to interview the young adult. When the parent

grants permission, the interviewer signs the consent form

and returns it to the central office of the NLS contractor for

secure storage.

NLS original cohorts

The NLS original cohorts were conducted for BLS by the

Census Bureau. Title 13 of the U.S. Code authorizes the

Census Bureau to conduct censuses and surveys and protects the confidentiality of respondents. Title 13 requires

that information collected from respondents by the Census

Bureau remain confidential. The information can be used

only for statistical purposes at secure locations by Census

Bureau employees who have been specifically authorized to

have access to NLS data. Individuals not employed by the

Census Bureau can have access to confidential NLS data

only if they have obtained “Special Sworn Status” from the

Census Bureau to use the data. Title 13 provides specific

penalties for violations of the confidentiality of companies,

establishments, households, or individuals. Publication of

NLS data must not include details that can identify individuals participating in the survey. Wrongful disclosure of confidential information could result in substantial monetary

fines and jail time. The Census Bureau’s internal Disclosure

Review Board sets the confidentiality rules for all data releases.

The Privacy Act also applies to the NLS original cohorts. The law requires the Census Bureau to provide NLS

sample members with information about the purpose of the

survey, the legal authority for conducting the survey, and

the ways in which the information about participants will be

used. The Privacy Act also requires the Census Bureau to

inform sample members that their participation is voluntary,

rather than mandatory, and that there are no consequences

to sample members who choose not to participate. This information enabled NLS original cohort sample members to

provide their informed consent to participate. CIPSEA also

applies to information collected by the Census Bureau for

exclusively statistical purposes under a pledge of confidentiality.

The information provided to NLS Mature Women and

Young Women sample members about their confidentiality

and reporting burden was similar to the information provided

to sample members in the NLSY79 and NLSY97. The information presented on the back of the advance letter for the

2003 NLS of Mature Women and Young Women is shown in

figure 9.3.

If the sample member received the advance letter and

agreed to participate, the Census Bureau regarded that agreement as informed consent and proceeded with the interview.

If the sample member had not received the advance letter

when the Census Bureau interviewer visited or called on the

telephone to conduct an interview, the interviewer either

handed the sample member a copy of the advance letter or

read her a statement that contains the information required

to obtain informed consent. If the sample member agreed to

participate, the interviewer proceeded with the interview.

The great majority of NLS original cohort interviews were

by self-response, meaning the sample member answers the

questions. If the sample member is unable to respond because of a physical or mental condition, a proxy respondent

can provide the information if the sample member is present.

Because the proxy respondent usually is a family member

living in the same household as the sample member, the Census Bureau assumes that the proxy has sufficient knowledge

to respond on behalf of the sample member. The interviewer

follows the same informed-consent protocol described earlier. That is, the interviewer makes sure that the proxy respondent has received a copy of the advance letter or has

been read the statement that contains the information required to obtain informed consent.
156 CHAPTER 9: CONFIDENTIALITY AND CONSENT

Figure 9.3. Confidentiality and reporting burden information in 2003 NLS Mature Women and Young

 Women advance letter

SOME COMMONLY ASKED QUESTIONS

WHY IS THIS SURVEY IMPORTANT?

Because of your help, the Department of Labor, as well as economists, sociologists, and other researchers, will

get a clearer picture of how work-related decisions influence people’s lives. If you are married, information

about your husband will help provide a more complete picture. Policymakers can use the work information we

obtain to shape economic policy. This is a voluntary survey, and there are no penalties for not answering

questions. However, missing responses seriously hamper our ability to make statements and predictions about

the country as a whole. Your answers represent hundreds of other women your age. We hope we can count on

your participation again this year.

WHO AUTHORIZES THIS SURVEY?

The Census Bureau is conducting this survey for the Department of Labor. It is authorized under Title 29,

Section 2, of the United States Code. The Office of Management and Budget (OMB) has approved the 2003

questionnaire and has assigned 1220-0110 as the study’s control number. This control number expires on

December 31, 2003. Without OMB approval and this number, we would not be able to conduct this survey.

WHO SEES MY ANSWERS?

We want to reassure you that your confidentiality is completely protected. We are conducting this survey

under the authority of Title 13, United States Code, Section 8. Section 9 of this law requires us to keep all

information about you and your household strictly confidential. We may use this information only for statistical

purposes.

HOW CAN I PREPARE FOR THE INTERVIEW?

We will be asking questions about your family life, your participation in the labor force, health insurance and

pension coverage, and special employment problems. If you are married, we will ask similar questions about

your husband. It would be helpful if you would give some thought to these topics before the field representative visits.

HOW MUCH TIME WILL THE INTERVIEW TAKE?

Based on preliminary tests, we expect the average interview to take about 70 minutes. Since not everyone will

complete all parts of the questionnaire, actual times do vary. Your interview may be somewhat shorter or longer

depending on your circumstances. If you have any comments regarding this study or recommendations for

reducing its length, send them to the Bureau of Labor Statistics, Office of Employment and Unemployment

Statistics, National Longitudinal Surveys Division, Project 1220-0110, Washington, DC 20212.

Census Bureau interviewers are required to sign an affidavit affirming their responsibilities to protect the confidentiality of respondents. Interviewers receive training that

stresses the importance of protecting respondent confidentiality. This training and the interviewer reference manuals

explain the appropriate procedures to follow when locating

or interacting with respondents or contacts. These procedures are similar to those that interviewers from NORC must

follow when conducting the NLSY79 and NLSY97, as described earlier in this chapter.

Disclosure limitation. Disclosure limitation is the process

for protecting the confidentiality of data. An improper disclosure of data occurs when someone can use published
CHAPTER 9: CONFIDENTIALITY AND CONSENT 157

statistical information to identify an individual who has provided information under a pledge of confidentiality. Using

disclosure limitation procedures, the Census Bureau modifies or removes the characteristics that put confidential information at risk for disclosure. Although it may appear that

a table shows information about a specific individual, the

Census Bureau has taken steps to disguise the original data

while making sure the results are still useful. Under these

restrictions, survey contractors and researchers are prevented from receiving certain information on NLS original

cohort respondents, particularly information on geographic

location, employer names, school names, and some income

data.

Research Data Centers. The Census Bureau’s Center for

Economic Studies has established a number of Research Data

Centers throughout the United States. At Research Data

Centers, researchers may have access to confidential data

sets collected by the Census Bureau, with appropriate safeguards to protect respondent confidentiality.

A considerable amount of geographic information collected during NLS Mature Women and Young Women interviews is available for researchers to use at the Research Data

Centers. The cohort-specific files contain the respondent

identification number, survey year, and State code. Researchers may match these files to the data sets. The Research

Data Centers have available the Federal Information Processing Standards (FIPS) State codes for each survey year. Having the State variables enables researchers to identify the

census regions and divisions. Variables also are available at

the Research Data Centers on county, metropolitan statistical area, ZIP Code, census tract and block, and latitude and

longitude of residence for Mature Women and Young Women

respondents. Selected environmental variables are available

about the counties and metropolitan statistical areas where

the women resided, and information also is available on the

names of the colleges and universities that the women attended.

The Research Data Centers also have information on

respondents’ State and county of residence that was collected in the NLS Older Men and Young Men interviews.

More information about the Research Data Centers is available online at www.ces.census.gov.

Data handling in all NLS cohorts

An important part of maintaining respondent confidentiality

is the careful handling and storage of data. Steps taken by

BLS, the Census Bureau, CHRR, and NORC to ensure the

confidentiality of all respondents to the NLS include maintaining secure networks, restricting access to geographic

variables, and topcoding income and asset values.

Network security. The data that are stored and handled at

each NLS organization’s site are done so with maximum security in place. During data collection, transmission, and

storage, password protection and encryption are used to

secure the data. Standard protocols for network security are

followed at each organization’s site. Detailed information

about these arrangements is not provided to the public to

prevent anyone from circumventing these safeguards.

Restricting access to geographic information. Geographic

information about NLSY79 or NLSY97 respondents is available only to researchers who are designated agents of BLS.

These researchers must agree in writing to adhere to the BLS

confidentiality policy, and their projects must further the mission of BLS and the NLS program to conduct sound, legitimate research in the social sciences. Applicants must

provide a clear statement of their research methodology and

objectives and explain how the geographic variables are necessary to meet those objectives. For more information about

obtaining access to geographic variables in the NLSY79 and

NLSY97, see the NLS Web site at www.bls.gov/nls.

Because of the confidentiality restrictions followed by

the Census Bureau, geographic information for the NLS original cohorts is available only at Census Research Data Centers.

Topcoding of income and asset variables. Another step taken

to ensure the confidentiality of NLS respondents who have

unusually high income and asset values is to “topcode” those

values in NLS data sets. Values that exceed a certain level

are recoded so that they do not exceed the specified level. In

each survey round, income and asset variables that include

high values are identified for topcoding. For example, the

wage and salary income variable usually is topcoded, but

variables indicating the amount received from public assistance programs are not. Notes in the codebooks for topcoded

income and asset variables provide more information about

the exact calculations used to topcode each variable. Additional information about topcoding is provided in the user’s

guides for each NLS cohort.